Myelo

Chemo is Working

2011-07-29T13:29:00.000-05:00

Since my last posting, I have had 3 more chemo treatments with the 5th one on Wed July 27. Only had one bad day during the month on July 19th when I had to get an IV of fluids while at the clinic for a scheduled appointment. Seems like I got dehydrated from the previous days of high temps and humidity. We had water in our basement from about 8" of rain during the previous weekend and were setting up the garage for a sale. I must have overdone it and was really weak and tired by the Tuesday appointment.

Anyway, on Tuesday this week, July 26, I had a PET-CT scan before my BMT clinic checkup for my chemo session scheduled on Wednesday. While at my chemo treatment, my BMT Dr stopped by and confirmed that the PET Scan showed no evidence of active cancer cells where the original biopsies indicated or elsewhere from my "eyes to thighs". He said that almost all patients who have this good of a PET scan after only 2 cycles of chemo (4 treatments) fully recover from Hodgkins. My sister went through this same process and experience with her Hodgkins and is cancer free today. I still need to go through 4 more cycles of chemo to make sure the stuff is killed for good. Thankfully, my reaction to the chemo and followup drugs has been good. I am essentially feeling as well as I have in the past 4 years since my BMT.

Praise the Lord. He must have more for me to do here on earth.

Afib, Colitis & dehydration

2011-06-25T11:09:00.000-05:00

I was scheduled for a clinic appt on June 14th, but had to go to the ER at 5am. I woke up with more atrial fibrillation but by the time I made it to the ER, it had disappeared. I was also having loose stools so they gave me fluids. My clinic appt was postponed until the next day when the Dr said that that I had chemo induced colitis. My white cell count was also low so I got shots of Neupogen. I had a hard time sleeping since the Neupogen stimulates cell growth and pain in the bones. I was into the clinic again on Thurs and Fri to get fluids and more Neupogen. My white cell count recovered and on Monday when I went in again, I felt a lot better.

All this time they are using my new dual Power-port to take blood and give fluids. On Monday, since I was in and out with just a blood test and no fluids, we forgot that I still had the IV lumen connected to the port. It wasn't until about 3:30pm when I realized this tube hanging under my shirt. Luckily, I was able to get back to the clinic before it closed to have the lumen removed so they could also flush the port with heparin.

This week, I have been feeling pretty good since my next chemo was delayed until Wed, June 29. I see the Dr on Tues to check blood counts again and confirm the chemo appt. We will see what the next week brings.

Hair & Mouth

2011-06-11T19:07:00.000-05:00

Well, the chemo is finally taking it toll on my hair. Every time I brush more comes out. Four years ago only the dark hairs fell out and I was left with wispy grey hairs, but I never lost it all or shaved it off. Just waiting to see how it looks.

My other complication is mouth sores primarily on my tongue and front lip. My sister recommended a combination of 1 Tbsp molasses and 1/2 an orange. I tried that last night but didn't taste too good and not sure how to take it. Today, my neighbor mentioned Tea Tree Oil which seems to be an Australian cure for everything. This afternoon I tried a mouthwash of the stuff and will see if it helps tonight.

Otherwise, I seem to be doing fine. I will back to the clinic on Tues to check how my blood counts are holding up.

Chemo #2

2011-06-06T17:07:00.000-05:00

I had my second round of chemo this morning and am feeling fine. Only slept 4 hours last night and needed a nap this afternoon. The last of the superglue came off my incision with a little encouragement last night. I was there at 8:30 am and started with premeds, Benedryl and Tylenol and vital signs. They used the new ports for which I was glad are dual ported. The first try could flush but not withdraw blood so they put heparin in and used the second port which worked well. They later were able to clear the first port later. The infusion of the four drugs, ABVD, took about 2 hours. We stayed a little while to see if I would have any reaction like the first time, but lucked out and we were back home by 4:30 pm. It was good to have my wife along for support, but I should be able to drive myself next time.

The new meds are affecting my sleep, averaging about 4 hrs at night with a one hr nap during the day. I am up before my wife and working around the house. I pretty much have the routine of testing my blood, counting carbs and giving my insulin and Lovenox injections. Have to take a couple of extra drugs at home over the next three days.

Keep looking up!

Blood counts back up

2011-06-03T06:24:00.000-05:00

I have had 2 clinic appointments this week and can report that I am feeling much better. I was dragging on Tuesday morning but perked up after my appt. My white cell and platelet counts were down so I had another appt on Thursday where both were going back up. Did not need a platelet transfusion as I had feared.

I still have a lot of bruising from all the needle pricks at the hospital and subsequent injections that I give myself. I check my blood glucose 4 times a day and give myself an insulin shot at least 4 times. I also need a daily injection of Lovenox to thin my blood following the Atrial Fibrillation last month. Hopefully, I can get back on Coumadin soon.

The incision from my dual port is healing well, but the superglue still hinders its use. Hopefully, the glue will continue to come off so that the ports can be used for my second round of chemo on Monday.

In the meantime, I am gaining strength. I have worked in the yard and garage, shopped for groceries, recycled fluorescent light bulbs, fixing stuff around the house and generally doing everything I could a couple of months ago. My son has been great in getting the lawn mowed and helping with any heavy lifting.

Your prayers are valued as I have the next round of chemo.

PowerPort Implanted

2011-05-26T16:02:00.000-05:00

I was in for out-patient surgery today and had a Bard PowerPort implanted in my right chest. As I mentioned in previous post, the PICC line I had was too much trouble to maintain for the 6 months that I will need chemo. My wife drove me to the hospital where they started about 8 AM in an outpatient room with all the vital tests to prove I could continue. At 9 AM, they moved me into an operating room where they prepared me for the surgery. Interestingly, they transferred me from the gurney to the operating table using a hover pad, an air mattress with many holes in the bottom. They inflated it with air and just floated me from one to the other.

The procedure went well though I don't remember much since I was sedated. I now have an incision about 2 inches where they placed the port with catheter under the skin and a little incision about 4 inches higher where they inserted the catheter into my right jugular vein, No stitches - all held together with superglue. The catheter continues over to my left where it ends in my superior vena cava, just like the PICC line did. The port is a duo version so that it can support two needles at once and will be used for all future blood draws or any infusions included the chemotherapy. My first use will be blood tests again on May 31 with chemo planned for June 3. There is nothing that I need to do at home to maintain it.

I was back to my out-patient room by 11 AM, had some lunch and my son picked me up at 12:30 PM. Home now and feeling good. Just bothered a bit by dry eyes, a little blurry vision and my first eye floater in about a year. Hope that clears up.

Hodgkin's Lymphoma

2011-05-19T20:32:00.318-05:00

A lot has happened in the last 5 months and I am going to try and catch up. Key development was a diagosis of Hodgkin's Lymphoma on May 19th.

I was hospitalized for 9 days starting Feb 8 due to a bad bout of diarrhea. After about 12 hours and about as many trips to the bathroom, I was so dehydrated that I could hardly stand. My wife called 911 and I was taken to the emergency room and then checked into the hospital. Turned out it was some bug that cleaned out my whole GI tract. I was on liquid only diet for days to allow healing and the a BRAT diet (Bananas, Rice, Applesauce and Toast. I was never so glad to get out of the hospital and stopped on the way home for a Big Mac.

Again on March 15, I had a night of diarrhea again though not as bad as the previous time. I was able to walk and my wife was going to drive, but then called 911 again for an ambulance to the emergency room. Thankfully, after some fluids for my dehydration, I did not have to stay at the hospital. Unfortunately, I got stuck with the ambulance bill which I am still disputing.

Then on April 20, I woke up with weird, rapid heartbeats. I have had short episodes in the past that would come and go, but only observed once when I was in the emergency room for something else. This time it didn't stop and after an hour I had my wife call the doctor. I had enough strength to walk so she drove me to the emergency room where they diagnosed it as Atrial Fibrillation. I was checked into the hospital and monitored by EKG and had an echocardiogram. The next day I had a TEE (Transesophageal Echocardiogram) to check for any blood clots in my atrium. Since no clots, I had a Cardioversion, a procedure that shocked my heart into normal rhythm. I walked out of the hospital feeling normal in a couple of hours. The next day, I noticed the outline of the shock pad on my chest. Only ongoing treatment so far was that I went back on Coumadin blood thinner to avoid possible clots.

During these months my Alkaline Phosphatase was increasing, indicating something was changing with my liver. Doctors increased my Prednisone from 20mg every other day until I was back up to 40mg every day. An MRI of my abdomen was scheduled for May 3 to check out the cause.

I had been suffering from a sinus infection for 4 weeks when I was put on a 10 day dose of Augmentin on April 28. By May 7, I was feeling well enough to attend an all day tech conference, Mother's Day and especially on May 9, my 63rd birthday lunch with my sisters and cousin. It was 4 years ago that I had my BMT on my birthday.

While I had some temperature fluctuations with the sinus infection, on Wednesday, May 11, I started having shivers and sweats at night. On Thursday, I was very tired and on Friday morning decided I had to get into the doctor. In the meantime, the results of the MRI had indicated some suspicious lymph nodes near my liver. After initial checkup at the BMT Clinic, they checked me into the nearby hospital. Because I had been on Coumadin, they could not take a biopsy of my liver and lymph nodes until my INR clotting rating dropped to at least 1.5. They did all kinds of other tests - blood, urine, stool, Xrays, CT scans while monitoring my condition. I continued with the temperature fluctuations from below normal to as high as 103.2. Tylenol was effective and I learned to anticipate it coming on to address before it got that high again.

So on Thursday, May 19th, my INR was low enough to do the biopsies of both my liver and the lymph node. They did this with the use of a CT scanner, using a live CT images to guide the needles to their target. I had to lay on my stomach for two hours while worked through my back. They would alternate between getting a CT image of where the needle was and pushing it in a little further. Took many iterations in and out. I was sedated, but saw some of the procedure on the monitor. The result was that the lymph node showed I have Hodgkin's Lymphoma which just happens to have temperature fluctuations as a symptom.

Before treatment, I had to have more tests to set a baseline and prove that I was healthy enough to proceed. On Friday, I had two bone marrow biopsies, one on each side. They were checking to see how my BMT was holding up and whether there was any trace of Hodgkin's in my marrow. I also had a Pulmonary Function Test and a full torso CT scan that showed a few more enlarged lymph nodes.

On Saturday, I had a PICC line inserted in my left upper arm. The PICC line goes into my arm, up over my shoulder and ends in the superior vena cava entrance to my heart. This line was required since smaller peripheral veins cannot handle the chemotherapy which was started at 7pm. The regimen used was ABVD, commonly used for Hodgkin's treatment. My main reaction to the chemo was severe chills afterward, to the point that my teeth were chattering. A dose of Demerol took care of the chills, but left me with the sweats. I slept well then and had a good Sunday.

On Monday, I had training for flushing the PICC line plus advanced diabetes management. Before all of this, I would check my glucose level before breakfast and take an injection of Lantus. While in the hospital, they checked before every meal and give insulin based on glucose level plus what carbs I had just eaten. I now have to do both at home as well. After my final training, they discharged me with a stop at the pharmacy to get a whole lot of additional medications to take at home.

On Tuesday, I had a followup appt with the BMT Clinic to get an injection of Neupogen which should stimulate blood cell production to counteract the chemo effects. While there, I complained about the PICC line extensions added so that I could reach and flush them out. I had these lines hanging down to my wrist and had to keep them netted up on my arm. Doctor decided that I should have a portacath installed. That will happen on Thursday, May 26, but they removed the PICC line immediately.

All in all, I am back home, sleeping in my own bed, typing this on my Mac computer and not feeling to much worse for the wear. I walked through the valley of the shadow of death with the BMT and have had four good years. While I have a few more complications now, life is good. Thank you, God!

Belated Update

2010-12-18T21:25:00.001-06:00

Seems like I am in a cycle of updating this blog every 4 months. I just had a couple of Dr appointments last week and remembered that it had been a while, but surprised that it had been that long. I see my BMT Dr every two months and my liver Dr about every 6 months. But when I saw my liver Dr last month, he ordered another abdominal ultrasound and another appointment which I had last week. The ultrasound showed basically the same thing as last May, though there are some abnormal lymph nodes, Lymphadenopathy. Both Drs don’t seem to be excited about it though. Just another disease to add to my list.

My ferritin and iron levels are remaining steady at 41-42 over the last two months. Normal ferritin levels are 20-300. My last phlebotomy was on September 23 and it looks like I won’t need another. I supposedly have Hemochromotosis, but so far my iron levels are steady.

Other problems that I still cope with are sensitive breasts, dry eyes & mouth, fragile skin, pain in my joints and neuropathy in my feet. My toes are always numb and it feels like I have a sock stuck in the toes of my shoes. I still check my blood glucose and take insulin shots each morning for my diabetes. I also take Creon pancreatic enzymes to aid in digestion and spironolactone & lasix to avoid fluid buildup. Finally, I am still on 10 mg of prednisone every other day. Better living through chemicals.

Other than that, I see my eye Dr next week, my BMT Dr in 2 months and my liver Dr in 3 months unless something comes up in between.

I think back over the past 6 years since I was first hospitalized and the 3 1/2 years since my BMT and am thankful to be alive today. I enjoy the time I spend babysitting my 11 month old grandson and being able to take a nap when ever I need to. God has kept me around for a purpose and though I could never work at a regular job, I enjoy life and doing what I can do from the comfort of my home.

Merry Christmas & Happy New Year

Delayed update

2010-08-28T21:01:00.000-05:00

Just realized that it has been 4 months since my last update. I should have posted at least 2 months ago. In the meantime, I have seen my BMT Dr twice and my liver Dr, diabetes Dr, eye Dr and GP Dr once each.

I have also had 9 phlebotomies after reducing the schedule to every 2 weeks. My ferritin level was 134 ng/ml on June 29 and then 67 last Tuesday. It dropped faster than I though it would. Since my target is 50, I probably have reached that level with my phlebotomy yesterday. My BMT Dr has ordered another phlebotomy in 4 weeks and will check my ferritin again at my next appointment in 2 months. Since I have Hemochromotosis, I have to watch my iron intake and may have to have periodic phlebotomies for the rest of my life. After 85 phlebotomies so far, I guess I will keep eating my steaks (iron) and bear the needle some more.

I had an abdominal ultrasound in May after seeing my liver Dr. They still see the liver damage from the iron though everything else looked ok. In June, I saw my local clinic Dr since I was have pain in my nipples. My woman Dr examined my breasts and said that I had no lumps or evidence of breast cancer. At least, I didn't need a mammogram!

Also in June, I saw my diabetes Dr who measured my glucose A1C at 5.7. This compares to glucose of 126 mg/dl which is about what I measure each morning. I am still taking insulin shots each morning as well.

In mid-July, I had another bout of diarrhea and went into the BMT clinic with a stool sample. They found evidence of the Adenovirus which is common in young children, I possibly picked it up from my 7 month old grandson. I also had conjunctivitis in my eyes, possibly a complication of the virus. The eye problems persisted for about a month, so I saw my eye Dr who said the adenovirus can cause these problems which at last seem to be clearing up. Unfortunately, she also found evidence of cataracts starting in both eyes. This is a complication of long-term use of prednisone of which I still take 10 mg every other day.

Finally, I am still taking 10 different medications with only one change in the last couple of months. My insurance company informed me that the FDA had dropped their approval of Viokase and Creon was prescribed instead. This provides a substitute for my lack of pancreatic enzymes to digest fats.

Out of blood?

2010-04-22T22:52:00.000-05:00

Well, I got my ferritin down to 284 ng/ml this week, but still need more phlebotomies to get down further to 50. Doctor's new order is to let blood every two weeks, but it is getting slower. Over the last 8 weeks the rate of reduction has dropped to 24 ng/ml per week. It was a 55 drop per week during the previous 8 weeks and 76 before that. Assuming an average drop of 5% per time, it will take me another 34 times or over year to get down to the target 50 ng/ml. The rate is dropping at an ever lower difference since it is .95x.95x.95...the more I have taken out the less is taken out. A point of comparison is that the average daily consumption (and elimination) of iron is 50 mg per week, I have about 2500 mg in my body and I have been having 24 mg per week removed.

Then on top of this, my hematocrit of 37.3% was too low to take blood today. It has to be at least 38%. My blood pressure was 94/57 which is low as well. Maybe I am running out of blood! Actually, my hematocrit was 39.3 on Tuesday at the Dr office so it may just be a variation in measurement or maybe I drank more before my appt this morning than I did on Tuesday. I have another phlebotomy scheduled for next week so will see how everything holds up.

I also had a special T-cell test this week with a reported Absolute CD4 of 682 which is supposedly good. This means that I no longer need the Pentamidine nebulizer treatment this month or hopefully in the future. Because I do not fluid retention problems, I get to reduce my Spironolactone pills to one each day. Still taking 9 different pills a day plus an insulin injection. I have a liver Dr appt on May 11 and will see what he thinks about all these changes.

Routine Status

2010-02-26T16:08:00.000-06:00

It has been 2 months since my last status since things have been pretty routine. I continue to have Phlebotomies every week though now on Thursday afternoons instead of the morning. This gives me time in the morning to babysit my new grandson (born Jan 10) and then take my nap later in the afternoon. Otherwise, having the Phlebotomy in the morning wasted most of the day.I take a nap every afternoon since I am also up until 1:30 or 2:00am every night watching the new baby.

I also saw my BMT Dr on Tuesday this week, a full 9 weeks since I saw him last. My ferritin level is down another 495 points to 475. The rate of reduction is slowing, now at 55 ng/ml per week instead of 76 in the previous 2 months. The slowing rate seems natural since the iron is less concentrated, less is taken out with the same volume of blood. Normal levels are 12-300 ng/ml for males so I may only have another 4 weeks to be back in the normal range.

I also continue to have the Pentamidine nebulizer treatment every month. A few weeks ago I had a Hepatitis B vaccination and need a few followup shots as well. I just stopped taking the Leviquin antibiotic so need to be cautious of any signs of bacterial infections. I was on Leviquin for 8 months after my BMT, then off for most of 2008 and back on it since my hospitalization in Dec 2008.

Iron Levels Reduced

2009-12-29T18:09:00.000-06:00

I am on a schedule of Dr. appointments every two months, but still have a monthly treatment of Pentamidine nebulizer for my lungs. I had my Dr appt last week and the nebulizer today. Most importantly, I got the results of my blood tests from last week and my ferritin level was down to 970ng/ml. Normal is at most 200 and it was 1556 two months ago. That's a drop of 586 in 8 weeks or 76 ng/ml per week. This is a little slower than it was earlier when it was dropping about 100 points per week. I can look for my weekly phlebotomies for a few more months anyway.

The Dr has also reduced my prednisone to 15 mg every other day. It was 20 mg and will reduce to 10 mg next month. We will see how I fare at the lower levels. Last year about this time I was down to 2.5 mg every other day when I was hospitalized with a bad bout of diarrhea and my prednisone was jumped back to 60 mg per day. Hopefully, I can get off the prednisone and maybe the insulin as well.

ICD

2009-11-23T17:39:00.000-06:00

ICD is the common abbreviation for The International Statistical Classification of Diseases and Related Health Problems. I have seen these codes before on forms that my BMT doctor has submitted to my disability insurance company but just figured out what they stand for. Full details of all the codes can be found at the ICD Data web site.

In particular, three codes that are used for me are:

Primary - Myeloproliferative Disease 238.79
Secondary - Graft versus Host Disease 279.50
Other - Iron Overload/Hemochromatosis 275.0

If you are interested in looking up other diseases, look at the ICD Index.

Steady State

2009-10-29T17:09:00.000-05:00

It seems like I have reached a steady state in my health status. My lab results are about the same over the past several months with the exception of my ferritin iron level. Two months have elapsed since my last report since that is the time between Dr appointments with the BMT Clinic. I did see the neurologist last week for the numbness in my feet and will see the hepatologist for my liver next week.

I still have phlebotomies every Thursday morning as I did today. The Ambulatory Care Unit measures my hematocrit only to make sure it is above 38 percent. Last week it was 40.6, but was 38.4 on Monday when I had blood drawn at the BMT Clinic. This morning it was back up to 41.9. This may just be variation in the accuracy and techniques used to measure it.

The phlebotomies are having a beneficial effect since my ferritin level is down to 1556. It was 2234 in August and 2618 in July. I actually skipped a week in Sept so it still appears to be dropping about 100 ng/mL per week. At this rate, maybe I will be over this problem in 3 to 4 more months.

My BMT Dr is studying my case further relative to why my iron levels caused cirrhosis of the liver. An HFE gene which causes Haemochromatosis was discovered last February. Interestingly, the HFE test was done on my pre-BMT blood which was saved for purposes like this. The Dr said he has presented my case to other hematologists and thinking about to writing a paper including me as a co-author.

My long term disability (LTD) insurance company is requesting an update on my medical history over the past six months to determine if they will continue the LTD payments. One these days I may have to find a new job. My past employer (who still provides health and life insurance) just laid off 350 people so I doubt that there will be a job for me to go back to. I continue to keep up on information technology through user groups, conferences, on-line webinars and self study. I could possibly take early retirement, but insurance would be the biggest obstacle.

Lower levels

2009-08-27T18:54:00.003-05:00

I have good news that both my cholesterol and iron levels are down. The Simvastatin has taken effect and my cholesterol has dropped from 252 a month ago to 139 this week. There may be some side effects since I seem to have more joint pain.

My ferritin has dropped almost 400 points in the last month, from 2618 to 2234. At this rate it might be down to normal in 5 months though I am not sure it is a linear process. My hematocrit was only 38.8 this morning, just barely high enough for my weekly phlebotomy. It was 40.4 last week so I might have to skip a week occasionally for my blood counts to recover.

On the negative side, I have developed Purpura, purple discolorations that are caused by bleeding underneath the skin. The doctor says that the prednisone causes thinning of the skin and I must scrape the area where a spot occurs. There is no pain and the spots disappear in about a week.

It will be 2 months until my next doctor appointment if all goes well. Other than phlebotomies, I need to schedule vaccinations for Hepatitis B. I probably will not be posting in the meantime. Remember that you can subscribe to be notified of updates; see the lower right margin.

High Cholesterol

2009-07-30T09:08:00.004-05:00

As a further complication in my medical situation, I now have high cholesterol. Probably have had it for some time because I just got tested relative to my diabetes. Some of my original MPD meds suppressed it. Anyway, my total cholesterol is 252 mg/dl where recommended level is less than 200. So now, I have an new medicine, Simvastatin , to take once a day. I had to drop my Fluconazole because of serious interaction with the statin. So I keep the same number of pills per day, about 20 with the Viokase which I take with meals. I am now totally confused as to what I can eat and need to plan my diet better.

On a positive light, my ferritin (iron) level is 2618, down from as high as 11,000. The normal range is 20 to 300 so I have a way to go. I had another phlebotomy this morning in a continuing effort to lower the iron in my body. In contrast, my wife has been to the same clinic to get an iron transfusion since her iron is too low.

I have another appointment with my liver doctor next week so should learn more about how I cope with the diet issues between iron overload, pancreatitis, diabetes and high cholesterol.

Back to normal

2009-06-16T20:45:00.003-05:00

I have been home from the hospital for 5 days and everything is back to normal, at least the way it was before my bout with the Rotavirus. We even ate out at the Old Country Buffet tonight.

I had a short Dr appt this morning to get labs done and all blood counts were normal. Hgb was 15.4 and Hct was 45.3% so I can get back to my phlebotomies on Thursday. Platelet count was 167 and white cells was 10.9, both right in the normal range. Only my glucose level was high at 136, but that was right after breakfast. Before it was 91 and good.

I have an EGD endoscopy scheduled for Friday and an EMG of my legs scheduled for Monday. On Tuesday, I see the diabetes Dr again. Maybe I will find out if the numbness in my toes is due to the diabetes.

Heading Home

2009-06-11T10:01:00.003-05:00

The Drs were here this morning and said that I can go home after lunch. I had to see a dietician and have the IV removed from my jugular vein. I had a little scare after they removed the IV. It seemed like the solvent used to clean the bandage glue off my skin made me light-headed, flushed & hot and cough repeatedly. I called the nurse back, laid down for a while and everything cleared up

I will be on a restricted diet for a few weeks: no fats or lactose. My blood counts are coming back to normal and I have had several normal bowel movements. I am not scheduled to see the BMT Dr again until June 30, but may get back on phlebotomies before then.

I have been developing some numbness in my toes and had to cancel an appt with a neurologist last week. So I need to reschedule that appt and one for my orthopedist. Question is whether the numbness is related to my knee arthritis or the diabetes.

It may be a couple of weeks before my next post, but remember that you can sign up for automatic notification by using the "Atom" link on the lower right of this page. This has several options to keep updated on changes.

BRAT Diet

2009-06-09T09:51:00.003-05:00

Well, it's another day and I get to eat additional foods. I have escalated to the BRAT level diet. No, not bratwurst, but bananas, rice, applesauce and toast with jelly in addition to the clear liquids that I was on yesterday. Seems like a smorgasbord in comparison!

I had a little scare yesterday when I thought there was blood in my stool. They took a test sample and said that it was just red dye from the berry gelatin that I ate earlier. I am pretty much back on my regular medications though some are still through IV. I don't take the Viokase since I am not eating any fats yet. My blood counts are a little low but not a concern. As expected my hematocrit was 35.7% where it would have to be over 38% for a phlebotomy. Hemoglobin was 12.2 g/dL where 13.3 to 17.7 is considered normal. Platelets were 101 where 150 to 450 is the normal range. Before my BMT, my platelet count was over 1000 and after it was down around 50 for many months.

After taking a shower yesterday, I was free of my IV for a while and took a walk through the skyway over to the Masonic Day Hospital. That was the location of most of my 90 blood transfusions prior to the BMT. Unfortunately, I didn't see many familiar faces since they have reduced staff over the last three years. I will continue to explore some more today.

Now just waiting for my bananas and toast to come. I think I will pass on the red dye gelatin (pun intended).

Liquid Diet

2009-06-08T11:34:00.002-05:00

Never thought I would be glad to be on a clear liquid diet, but it is a big step up from the NPO. I had chicken broth, jello, flavored ice and apple juice a few hours ago. Drs will see how this goes today and maybe I can upgrade to a full liquid diet tomorrow. Then I can have a few soups, cream of "cereals", puddings, yogurt, etc. The IVs was turned down to 20 ml/hr last night, but I still had to get up every 90 minutes during the night. I must still be saturated. On a positive note, my kidneys are certainly working efficiently. During the day, the IV rate is turned back up to 250 ml/hr.

I have been on some medicine named Carimune, which is taken orally to get right to the source of my problem. The drug company does not show an oral version so I asked my Dr if this was experimental. It is a common variation that the pharmacist mixes up. Cost is $500 for 7.5 oz dose. At four doses per day over 3 days, the total cost is $6000. Certainly glad I have insurance.

I took several walks yesterday, one with my wife and one all by myself. I went down to the ground floor and played the piano near the back waiting room for 30 minutes. The piano was a little out of tune and I am a little rusty. Luckily, there were few people around. I don't think I will try that today with all the people around.

I spend most of the day on my iBook laptop with one eye on the TV. I have been watching the Food Network, building up my appetite for a trip to Famous Dave's for BBQ and beans

Thought now is I will be here for a few more days until the loose stools clear up completely and I can survive without IVs.

Rotavirus Continues

2009-06-07T10:42:00.003-05:00

It is now Sunday morning and 5 days since I was admitted to the hospital for dehydration from diarrhea last Monday night. Drs say that there is still traces of the Rotavirus in my stools which are still very soft, but not very frequent. They also say that my intestinal mucosa needs to heal so I am on a NPO diet (Nil Per Os - Latin: Nothing by Mouth), no food or water except to swallow my pills. They pump 250ml of IV into me each hour and I run to the bathroom almost hourly to pee it out. Seems like a never ending cycle similar to what came first, the chicken or the egg. My weight is back to almost what it was before all this started so actually the benefit of the IVs is for me to filter out the 5% Dextrose for nutrition.

I feel fine and my blood counts and blood pressure are back to normal as well. I took two walks around the 4th floor yesterday. Maybe I will go to other floors or try to make an escape later today. Currently looks like I won't go home until Tuesday because they want to see how I react to a limited diet for a few days first. I will post at least a short status report each day. If nothing else, it is something to do to cut the monotony of this place.

This morning I watched a TV church show where the sermon was about Jonah and the whale, Made me wonder what the "reason for my affliction" is. There is something symbolic at least about being "in the belly" of the whale, but three days have come and past; I am still here. I need to ponder this some more and pray that I will be "vomited out upon dry land". (KJV version of Jonah 1 & 2 is quoted.)

Code Brown - Rota Virus

2009-06-05T11:31:00.006-05:00

Just like my bout with diarrhea before Christmas, I am back in the hospital again. On Monday afternoon, I started feeling very hot and sweaty though I had not exerted myself much and had no fever. We barbecued some bratwurst but before eating I lost my appetite and felt nauseous. A short time later, I had my first run to the bathroom with diarrhea. After about 8 more episodes, the later ones with vomiting, I was getting severely dehydrated. I lost 10 lbs since the morning even though I had a good breakfast and lunch. During the night I tried to drink more water, but by morning I could not sit on the edge of the bed because I was too light-headed. I even dropped a cup of water, breaking it on the floor.

My wife called the BMT clinic and then 911. The paramedics came and took me to the hospital emergency room while giving me an IV on the way. All I had on was my disposable diaper, but at least I was still warm. After a brief stay in the emergency room, they got me up to the intensive care unit (ICU) where they put me on more IVs. To increase the flow they inserted a central line (with 3 lumens) into my jugular vein and at one point were pumping 2 liters of fluid per hour into me. I still had 2 other IVs inserted by the paramedics and ER staff. In the space of one day, my weight fluctuated from 208 lbs down to 198 lbs and up to 223 lbs, just due to losing or adding fluid. Back in December, my weight had been up to 235 lbs before we brought it down to around 198 through paracentesis plus diuretics.

A big complication of the dehydration was that my blood pressure dropped severely and my kidney function was decreased. My BP was down in the 60s/40s where normally it is the 120s/70s. Of course, my kidneys did not really have much fluid to remove, but Drs were concerned that the creatinine level was elevated. In addition, they discovered a heart problem called PAC, (premature atrial contractions) though not life threatening and not related to this situation. My white cell count was elevated indicating an infection while my platelets dropped. I skipped my phlebotomy yesterday if for no other reason they have withdrawn enough with blood samples over the past four days. All of my blood counts are now back to normal.

Anyway, one of the tests showed the Rotavirus, which is the leading single cause of severe diarrhea among infants and young children. I am now on a couple of medications to fight the virus and supply lost minerals plus a full liquid, lactose-free diet. They allowed me a regular diet yesterday until the diarrhea came back last night. Now I just heard they are taking me off everything by mouth except for medicines and ice chips. They want my gut to rest and heal.

For a while I felt like I was tied to the bed. I had 5 leads for EKG monitoring wrapped around my chest with IVs in both arms and the central line in my neck, all getting tangled together. One line was tied to a special instrument that monitored my central venous pressure. That was mounted on the wall so I could not walk with it to the bathroom. I had to use the commode by the bed. At least now I am down to just the central line in my neck which is used for one IV and blood tests. I can get up and walk around the room and take my "coat rack" (IV stand) with me to the bathroom. I still get poked 4 times a day for insulin shots though.

They don't let me out of the room and any hospital staff that comes in wear disposable gowns, masks and gloves. They are very cautious about spreading this contagious virus to others who have compromised immune systems in this ward. My wife also had a minor bout of diarrhea on Tuesday after me. She also learned yesterday that a student at the grade school where she teaches has the Swine flu. Luckily, it was not one of her students, but we have to be extra cautious if she gets any symptoms.

I probably will not be home until Sunday at the earliest if I can make it a day without the diarrhea.

Two-year Rebirthday

2009-05-19T08:47:00.002-05:00

Actually, it was 2 yrs and 10 days ago on May 9th that I had my bone marrow transplant. May 9th is also my real birthday, 61 years ago on Mother's Day. My transplant was actually a stem cell transplant and happened over a two day period starting on May 8th. You can read about those days starting on the May 1 post. This is really my second rebirth day since I accepted Jesus Christ as my personal savior about 45 years ago. That was at the Blessed Hope Bible Camp named after the Bible verse: Titus 2:13 "Looking for that blessed hope, and the glorious appearing of the great God and our Saviour Jesus Christ."

Back to today, I officially was told last week that I have Type II Diabetes. I am now testing my blood glucose 4 times a day, before meals and before going to bed. I take 12 units of insulin in the morning just after testing my glucose level. After 5 days, I still have not seen any effect from the insulin, but have a diabetes clinic appointment this afternoon to get further instructions.

I am not sure of the cause, but my toes are numb. It makes my right foot feel like I have a sock bunched up in the toe of my shoe. It feels the same with different socks and different shoes. I saw my orthopedist last week about the arthritis in my knees. He thought maybe the numbness was due to swelling in my knees pressing on nerves to my feet so I now have an EMG scheduled for June 2. It may also be from the diabetes. I was investigating getting the knee replacement that I had scheduled in Nov 2004, but my BMT doctor advises against it. If my arthritis gets to bad, I can probably get cortisone shots.

Actually the prednisone that I am taking helps the inflamation. A year ago when I was almost off of prednisone, my arthritis really flaired up. I am staying on a a constant dose of prednisone (alternating between 20 and 10mg each day) over the next six weeks until my next BMT appointment.

My disability insurance just reviewed my case and extended my disability status for another period. One of these days, I plan to post a summary of the past 5 years though you can read all the details in the past postings on this blog. See the sidebar on the right.

Diabetes Testing

2009-05-02T21:03:00.003-05:00

I had an appointment with the Diabetes Clinic on Thursday afternoon after I had my phlebotomy in the morning. A physician assistant (PA) reviewed my lab history over the past 4 years and gave me an A1C test. This test is kind of an average of the blood glucose level over the past 120 days, the average life of a red blood cell. My A1C level was 5.9% while my glucose level that day was 163 mg/dL which doesn't quite correlate. Seven percent is supposed to correlate with 150 mg/dL. I picked up a One-Touch blood glucose tester for home use and since have seen a range of 103 before breakfast yesterday to 252 just before dinner today. I will monitor it for a couple of weeks and then the PA will determine what is next. It could be Type II diabetes, but almost certainly elevated due to the high levels of prednisone that I have been taking for the last 2 years. We discussed possible medicines to use in lieu of insulin shots.

My hematocrit has started recovering after the phlebotomies, 42.6 this week after 40.8 last week. Next week I see the liver specialist on Tuesday and have my 2-yr bone marrow biopsy on Friday. This is the 11th biopsy which involves sticking a big needle into my hip bone. Saturday is actually my 2-yr re-birthday since the BMT as well as being my actual birthday, 61 yrs ago. On May 12, I meet again with my BMT doctor and review the biopsy results. I will report next after that appointment.

Diabetes?

2009-04-23T00:06:00.002-05:00

Just when I start feeling better, something new comes up. This time it is my glucose level, 274 mg/dL last week though even higher at 335 before that. 60 to 99 is considered normal. So next week I have an appointment with the Diabetes Clinic to get that checked out further.

On the plus side, my liver functions seem to be improving. My alkaline phosphatase is down to 161 U/L from a high of 587 in February. ALT (47) and AST (77) are essentially normal.

I have another phlebotomy today (Thursday) and will be interested in what my hematocrit will be. This is the 6th week in a row and my hematocrit has been dropping each time. Last week it was down to 41.4%, I felt light-headed afterward and had to wait about 30 minutes before leaving the clinic. It was 45.6 a month ago and 38 is the lower limit for proceeding with the phlebotomy. I may have to skip a week sometime to let my red blood cell count recover.

I am proceeding with further taper on the prednisone and am on hold for the Fluconazole. I have been on Fluconazole for fungal infections since back in 2007. I was off it for a few months last Fall before I had the bad bout of diarrhea. Not sure how that is related.

The Dr thought I could probably go back to work until I reminded him that this is the third cycle that I have reduced my prednisone and I am still not to the level I was at in Novemeber when everything went crazy. He agreed that we probably have a few more months to go before knowing what the minimum level I need. I was down to 2.5mg every other day and am still alternating between 15 and 20mg each day now.

Anyway, your prayers are appreciated as I weather the new complications.

Phlebotomies

2009-03-28T13:10:00.003-05:00

I started having phlebotomies a year ago to reduce my iron level. I have been having them every two weeks except when my medical status would not allow. The count so far is 23. I may need 93 of them to match the number of blood transfusions from which I accumulated the iron. This is a rough estimate since the transfusions were packed red blood cells and the phlebs are whole blood. With at least 70 to go, it would take me another 3 years to get my iron back to normal.

Since others people having phlebs have tolerated them every week or even twice a week, I asked my Dr if I could get them more frequently. He agreed and Thursday I had another with only a week since the previous one. Everything went well. My hematocrit had recovered to 44 in the one week from the 45 level before the previous one. The hematocrit is checked before the phleb but not after. The threshold level to proceed is 38. My blood pressure dropped only a few points to 116/66 after the phleb. So I am now scheduled for phlebs every Thursday. If I can sustain this rate, I may be back in normal range within 18 months.

On the fluid front, I have not taken any Lasix since Monday. My weight has been steady at about 196 lbs and if it goes over 200, I will take another Lasix. Otherwise, I am feeling fine though tire easily and don't have the the physical strength that I used to.

To Pee Or Not To Pee

2009-03-23T19:04:00.002-05:00

Seems like one of my challenges now is to balance my fluid levels and subsequently my weight. Three months ago, I weighed 239 lbs with a lot of fluid buildup. With treatments including diuretics like Lasix, I was down to 198 lbs on March 10. Unfortunately, my blood pressure was also down to 99/63 sitting and 77/44 standing and I was faint and light-headed. I got IV fluids and dropped the Lasix and blood pressure medicine. Then in the next week, I gained ten lbs back. After switching back to Lasix, I spent last weekend running to the bathroom. I actually urinated 20 times within a 24 hr period on Sunday and every 20 minutes during the first hours after taking the Lasix. Today, my weight was down near 190 lbs so the clinic told me to stop the Lasix again until Wed. I think this is all complicated by my diet and salt intake. So I need to monitor my weight every day and find a level of Lasix that will be just enough.

On my iron level issue, my last ferritin test was unbelievable at 11,000. Dr says it was inaccurate because of my liver so will test again next month. The last reasonable level measured was about 4000, still about 10 times the normal level. My blood iron saturation level was 86% where normal is between 20 and 55%.

I just bought "The Hemochromatosis Cookbook" from the Iron Disorders Institute. The book and the website are good sources of info on iron retention problems and dietary solutions. I am trying to figure out what foods are best to eat since some are a source of iron and others inhibit iron absorption.

Hemochromatosis

2009-02-18T01:38:00.004-06:00

I was back to the BMT Clinic yesterday for my weekly dose of Methylprednisolone, kind of booster IV steroid to knock out the GvHD. It may be working since I have not had any diarrhea the past week though I was already feeling better before my first dose on Feb 10. My prednisone dosage was also reduced from 30mg per day to alternating between 30 and 20mg each day. Since I had both the regular dose and the IV booster, I am again writing this in the middle of the night.

I also had a phlebotomy last Thursday, so my hemoglobin, hematocrit and red blood cell count were still down. Other counts were ok, though liver enzymes are raised, but coming down.

The Dr told me that I have a gene that may predispose me to Hemochromatosis, a condition that affects the absorption of iron. While the main cause for my iron overload and liver/pancreas problems is still thought to be all the blood transfusions, this may be a factor to contend with as well. This gene is hereditary so may have been passed down to my children and may affect others in my family tree.

While I was at the clinic, I also requested that the records department send an update on my medical history over the past couple of months to the long term disability (LTD) insurance company. They are doing a review of my LTD payments for the 2 year anniversary of my BMT in May. (I also requested a copy of the records for my own file since I don't see all of the details through my normal Dr appointments.) LTD payments are about 57% of my last paycheck, but dependent upon whether I am still considered disabled. A portion of this payment is actually through Social Security.

More diarrhea

2009-02-11T02:54:00.003-06:00

I had my scheduled appts with the BMT Dr and the liver specialist yesterday, but not before having to go in last week. A week ago on Feb 2, I developed diarrhea again, though not as bad as before Christmas. I suffered for 3 days without leaving the house before calling the clinic on Thursday. On Friday, I brought in a stool sample and had an IV to replenish fluids. The diarrhea had let up by Friday, came back on the weekend but has been ok since Monday.

At the appts yesterday, the results of the stool sample were negative for viruses and I received my now monthly Pentamidine nebulizer treatment for bacterial infections (instead of the Bactrim). My fluid retention has reduced and I have lost 20 lbs since December. Bloods counts are good with the exception of the liver functions which seem to be improving some. I also had a methylprednisolone IV which will be repeated every week for 5 more weeks in an attempt to knock out this GvHD which is suspect for the diarrhea. The regular prednisone tablets have been tapered more to just 30mg per day. This extra steroid is the probable reason that I am writing this at 3:30am though I was out of the house for almost 12 hrs yesterday. I also took a side trip to St Paul, had dinner and attended at a NATT meeting in the evening without coming home in between.

The local NATT Stop the Clot meeting last night featured presentations by Sanofi-Aventis (makers of Lovenox) and Sigvaris. The first presentation stressed that March will be DVT Awareness month and that more people die of DVT/PE each year than from breast cancer and AIDS combined. This is important to me since I had at least 5 pulmonary embolisms 4 years ago and by the odds should not be on this earth today.

Sigvaris makes support stockings which are important to the prevention of DVT. These are commonly referred to as TED hose like they give you in the hospital for knee surgery. But I learned that "TEDs are for beds" and not for general long term preventive use, at least for those that you take home from the hospital. Sigvaris makes specific socks that fit and look better for everyday use. They are constructed to provide different presures dependent on your needs and variable pressures with more at the ankle than at the knee or thigh. A good guide to how the venous system works, their products and what you can do can be found here.

Cirrhosis Confirmed

2009-01-14T09:04:00.002-06:00

Yesterday was a long day of medical tests and appointments. I started out at the BMT lab at 8am with blood tests and an antibiotic IV of Ceftriaxone, prior to my scheduled endoscopy (EGD) at 9am. My wife had dropped me off at 7:30 am, since I could not drive my self after the EGD. There was a lot of delay and the EGD did not start until about 11:30. Even before they would start they needed to confirm with a family member who would pick me up afterwards. Since I was supposed to see the liver specialist at 11am that was delayed as well.

Anyway the actual endoscopy went ok. The Dr strapped a mouth guard around my head while the nurse administered a sedative through my IV. Before I knew it, I was recovering with a minor throat irritation. The report of the exam highlighted some recent bleeding at the pylorus, between the stomach and duodenum and a hiatus hernia, though neither appeared serious. Some biopsy samples were taken, but need to be tested.

After the EGD, they pushed me in a wheelchair over to the liver Dr at about 12:30. I then saw my BMT Dr at about 3pm. Everyone seemed to be running late, but I got through it all. By the time my son got me home at 4pm, I was hungry and needed to catch up on all my pills.

Because of the bleeding and hernia, I have stopped taking blood thinners (Coumadin and Lovenox) and will double my dose of Protonix for acid reflux. Recent blood tests had indicated that my original blood clotting problems had been "cured" by the BMT anyway.

The most concerting prognosis from the liver biopsy last week was that there is scarring or cirrhosis of the liver most likely due to the iron buildup discovered before or a complication of the GvHD. The analysis of the Ascites fluid showed no infections or evidence of any tumors. Changes in treatment include a new medicine, Spironolactone, to help reduce the fluid retention and stopping of potassium which is not needed with this mew med. We will see if the Ascites returns and if I need additional drainage of the fluid. Since my blood counts are good again, I will restart the phlebotomies tomorrow and continue every two weeks, possibly for another 3 years. My next appoinments with my BMT and liver Drs is scheduled for Feb 10.

Liver Biopsy

2009-01-07T21:34:00.002-06:00

I had my liver biopsy today as well as paracentesis to relieve the fluid buildup. I started out with a BMT Clinic appointment where I also brought in a 24 hour urine sample that the lab will test. My regular blood counts were normal with my hemoglobin now back up to 14.4. The Dr thought he heard some irregular heart beat and ordered an immediate EKG, but no problems were found. They also monitored my EKG during the biopsy.

It took a total of 5 hours for the procedures including 2 hrs of prep and 2 hrs of monitoring afterward. It was really nothing to fear compared to the many bone marrow biopsies that I have had. They started with a quick ultrasound to decide where to poke the needles and selected both on the right side (where the liver is of course). They drained off 4 liters of fluid which weighs about 8 pounds before getting a couple of liver samples. I had a couple local lidocaine injections to numb the areas where the needles were inserted and had some other IV sedative for the biopsy itself. But I was able to see the needles on the ultrasound screen during the action and mostly felt the one as it entered the liver.

Because of the sedative, my daughter drove me to the appointment and my son picked me up. I am feeling much lighter, easier to breathe and generally a whole lot more comforttable. Hopefully, the other fluid in my legs and around my lungs will also dissapate as well. I should learn more about the testing of the fluid and liver samples next week.

Liver Analysis

2008-12-31T15:25:00.002-06:00

I was in to the clinic yesterday for more tests and spent 7 hours there. It was a snowy day, one of our cars is disabled, so my son drove me down and my wife picked me up. I met first with a liver specialist who reviewed my case and ordered a liver biopsy and paracentesis to treat my ascites (fluid buildup in my peritoneal cavity). They will also analyze the fluid extracted and relieve the pressure temporarily. No schedule yet on these tests. He mentioned that I have no evidence of hepatitis and my stool sample tests were all negative.

After a small lunch, I had a blood test which showed my liver function tests were still elevated, but other blood counts were ok. Instead of going back on Bactrim, I had a Pentamidine nebulizer treatment at the office to prevent microbial lung infections. I also have to collect 24 hour urine sample before my appointment next week. I have also switched from the warfarin to Lovenox for blood clotting prevention. This way I can stop Lovenox for a day prior to the invasive tests that I still need to have and avoid excessive bleeding.

After that I walked over to the hospital MRI lab for my MRCP (see last post), but had problems keeping my pants up as I walked. I look like a pregnant man with all the ascites fluid and need to find my old suspenders to hold up my pants. Anyway the MRCP took about a hour, requiring drinking of more contrast solution and an IV ofother stuff. They took at least 800 pictures and I must have held my breath about 30 times. They were supposed to do an MRV as well, but said that may be done another day after review of the MRCP.

Though I had diarrhea over the weekend, it let up Monday night and is still ok today. I was grateful I did not have to deal with that yesterday as well though I carried around supplies if I needed to clean up. What a relief, but I suspect there is more to come.

I will try to post again next Wed after my next appointment.
Happy New Year

Home again

2008-12-23T20:29:00.002-06:00

I am home again and feeling somewhat better. My daughter had to pick me up at the hospital yesterday because my wife was heading to another emergency room to meet my son arriving with similar diarrhea problems. Not sure if we had some of the same bug or something, but he has recovered a lot faster than me. I still have loose stools, but can comfortably make it to the bathroom without messing up. I also ate a 6 inch Subway sandwich this evening so my appetite is back. I am still retaining fluid but on LASIX (furosemide) which seems to be helping. I am also taking Levaquin as an antibiotic to counter any bacterial infection that I might have.

It does not look like I will have a liver biopsy, but will have a number of other tests over the next three weeks. The main ones are an MRCP, an MRV, an EGD and extended 24 hr stool sample. The MRCP (Magnetic resonance cholangiopancreatography) is an MRI to visualise the biliary and pancreatic ducts and should tell us more about the functioning of the liver and pancreas. An MRV (Magnetic Resonance Venogram) is an MRI of liver and other abdomen veins. The EGD (Esophagogastroduodenoscopy) will check for esophageal varicose veins and take biopsies to check for GvHD in my upper GI track. The EGD will not happen until January 13th and is the one I feel will be most unpleasant but may mean the most. The MRCP and MRV are on December 30.

I will back in the BMT Clinic on Friday (26th) with the stool sample and another blood test. If anything changes then I will post, otherwise it will probably be next year before I report again.

Remember "the reason for the season" is Christ. Keep him in Christmas and have a Happy New Year.

Code Brown

2008-12-22T07:23:00.005-06:00

I am writing this from the hospital where I was admitted early Saturday, December 20th. This is titled "Code Brown" for the term they use here for diarrhea patients. I had three bouts with it at home before my wife called the ambulance at 6am. It continued every 1/2 hour until about 11am when they put in an anal catheter to catch the fluids into a bag. I had good relief from all the mess until it started to back up in about 24 hrs. Then I started wearing disposable diapers and now 50 hrs later it has just about cleared up.

Last week, I had three Dr appointments, many blood tests, an ultrasound of my abdomen and a complete torso CT scan. I had to drink a barium solution with the CT scan and had diarrhea from the solution before and after the scan,

The current focus of study is of my liver, possibly complications of the iron buildup. I may have to have a liver biopsy to check for cirrhosis. My liver functions (blood test) are out of range. I still have a lot of fluid buildup in my abdomen and around my lungs making it a little difficult to breath.

Since I started writing this about 4 hours ago, I have seen at least 3 more Drs. Current thought is that I will go home after lunch and followup with some more out-patient tests tomorrow and see the Dr on Friday. I will post here at least once more this week and more if anything develops.

Well, it looks like I will be home for Christmas anyway. Remember the meaning of of Christmas and keep Christ in it.

Merry Christmas!

More GvHD

2008-12-10T22:48:00.004-06:00

Just as I had about tapered off of prednisone, GvHD hit me again. I was on 2.5 mg every other day with a plan to drop off completely this week. But over the last month, I gradually started to feel more fatigue, nausea, loss of appetite, cramps, joint aches and breathlessness. I scheduled a Dr appointment for Monday where I discovered my Hemoglobin (Hgb) was down to 11.9 the lowest it has been for 14 months. Good news was that my platelets are up to 144, the highest it has been since my BMT 19 months ago. Before then my problems were too high platelets and too low Hgb. Normal range for platelets is 150-300 so that is not a problem now.

I also had a range of other tests: chest x-ray (ok), EKG (?), echo cardiogram (?), nose swab (?) and stool sample (ok). There was blood in my urine indicating hemolysis of my red blood cells and subsequent low Hgb. I saw the Dr again today and more blood tests were taken. I see him again on Tuesday. I wasn't supposed to see him for another month, but that was not to be.

In the meantime, I am back up on prednisone to 60 mg every day. After all the sleep I have been getting (13 hrs of last 24), I expect I will now be up until the wee hours of the morning. High doses of prednisone are known to do that until I run out of gas and crash.

Though I am anxious to get back to work, the last several weeks have shown that I was not ready. The Dr has indicated that we will review that possibility in May next year. By then, there may not be any jobs available though now I get at least one call a week.

As inspiration in this time of trouble, I was listening to CD titled "Be Still and Know" (Maranatha Music) which an 'angel' from our church gave me while I was in the hospital after my BMT. The CD has a track "My Beloved" which is narrated with a deep male voice symbolizing God. It goes "Our relationship is based on my faithfulness. Your faith may wax and wane, but my faithfulness endures forever. I will never let you go. So put your trust in me. In every situation remember these words. 'Don't be afraid! Just believe.' I know the plans I have for you. Plans to prosper you, not to harm you. Plans to give you hope in the future. But this will only happen if you put your hope in me, and live according to my word. Don't be afraid, just believe. That is your responsibility in our relationship. Believe that my love for you is unfailing. Believe and trust in my goodness. And when you get discouraged, quickly turn to me. Call out to me for help and I will deliver you from trouble. My faithfulness will be your shield and your fortress. I will fill you with joy and peace as you trust in me. So that you will overflow with hope by the power of my spirit. So don't be afraid! Just believe. ... When you hope in me, you will not be disappointed. ... Don't be afraid, just believe."

18 Months & NATT

2008-11-12T21:44:00.003-06:00

Sorry for the 2 month delay in posting, but I figured that now I have reached a major milestone, 18 months since my BMT, I should update this blog. I had my milestone checkup with my Dr yesterday, but no great changes. Last month, I reduced my prednisone medication to 5 mg every other day and today reduced again to 2.5 mg. I have been having more joint pain which may be a result. When I cut out the prednisone completely in March, I could hardly walk, so will be watching what happens now.

I am still having phlebotomies every two weeks to reduce my iron levels. An MRI of my liver last month showed that my liver is loaded with iron. My blood ferritin level was also 4074, where 150-300 is normal. It will take another 3 years at this rate to reduce my iron levels to normal. A Google search on iron overload shows that it causes fatigue and joint pain as well. This somewhat explains why I have been taking so many naps and my joint pain as well. Hopefully, the other complications of iron overload don't occur.

Last month, I also dropped the protonix and fluconozole medications, but after my complaints of heartburn to the Dr yesterday, I am back on the protonix at half the dose. I also tried to reduce the Viokase, but learned I still need it. It replaces the enzymes that my Pancreas is not producing. I actually need to take higher levels since I had more oily diarrhea in the past month.

During October, I attended a local conference call "Stop the Clot" sponsored by the National Alliance for Thrombosis & Thrombophilia (NATT). I also attended a local support group last week. You may remember that 4 years ago, I was hospitalized for the first time with pulmonary embolism (PE), three blot clots in my lungs. I had a couple more episodes in 2005. I was very fortunate since 25% of PE results in sudden death. I heartily recommend that you check out this web site and learn to recognize the symptoms.

Overall, I am very fortunate to have made it this far and have relatively minor problems. God has been watching over me and must have some purpose still in store for me, maybe just as an example for all of you.

Steady as it goes

2008-09-02T22:27:00.002-05:00

Six weeks have gone by since I last posted and my health situation is steady. I continue to get my INR (blot clotting) checked monthly and get phlebotomies every 2 weeks. I have another on Thursday. I saw my doctor today and all blood tests are ok. The blood test from last month confirmed that my bone marrow graft is still 100% and the common JAK2 test is still negative, both great news. To check my iron levels, I will get an MRI of my liver next week. (Maybe the MRI magentic field will suck the iron out !>) Actually, there is a new technique that can measure the iron levels stored in the liver. The Dr feels we need to check to minimize the number of additional phlebotomies that I need to reduce the iron.

Platelet count is still low at 107, but hemoglobin is over 14. All medications are the same with only another reduction in the prednisone, now at 10 mg every other day, down from 15 mg. I continue on the Viokase before every meal and notice the effect if I miss taking it. My digestion of fats is affected and I experience diarrhea within 24 hrs. I am fortunate that I feel pretty good though realize that my immune system is still compromised.

When I am too active, like mowing the lawn this morning, my right knee complains due to arthritis. On days without prednisone (like today as well), I experience more fatigue. Today, I was up at 7:30 am and then took a nap after mowing the lawn. I spent three hours with my Dr appt this afternoon and then took a 3 hr nap this evening.

Keep looking up!

Taper Continues

2008-07-24T21:20:00.002-05:00

Another month plus a few days have gone by since I last posted. Not much is changing on the health front. I continue to get my INR (blot clotting) checked monthly and get phlebotomies every 2 weeks. I just had one this afternoon. I saw my doctor on Tuesday and all blood tests are ok. Platelet count is still low, but hemoglobin is over 14. All medications are the same with only another reduction in the prednisone, now at 15 mg every other day, down from 20 mg. I continue on the Viokase before every meal and notice the effect if I miss taking it. My digestion of fats is affected and I experience diarrhea within 24 hrs. I am fortunate that I feel pretty good though realize that my immune system is still compromised.

When I am too active, my right knee complains due to arthritis. I am a little jealous of my wife's recent knee replacement surgery though she has gone through a tough month of recovery and therapy. On days without prednisone, I experience more fatigue. This morning I forced myself up at 6:30 for a breakfast Macintosh user meeting. That coupled with the phlebotomy, no prednisone plus too much spaghetti meant I needed a nap this evening.

But God is good. I am very fortunate to be able to complain a little after 4 years.

Knee Surgery

2008-06-20T12:07:00.005-05:00

Sorry but it has a month since I last posted. This is indicative of the fact that I am feeling good and not dwelling on my MPD which now really affects my life very little. I just have to remember to take all my medicines and try to avoid any infectious situations due to my compromised immune system. I had a Dr appt on Tuesday where he said I can consider going back to work, probably part-time at first. I have a phlebotomy every two weeks to reduce my iron levels and an INR test every 2 - 4 weeks to check my blood clotting. My blood counts are improving with the platelets now up to 107.

I may never have knee surgery due to my history of blood clots, but my wife has beat me to it. I write this while she is in surgery for a right knee replacement. She is getting it done over the Summer so she can recover to teach school in the Fall. I will post status on her recovery.

We spent 4 nights over last weekend at a resort in Bemidji. The week before we spent 3 days in Boston (Cambridge) for my daughter's graduation from Harvard. She has now moved back to MN and I helped her move into an apartment yesterday. It has been a little hectic around the house with all her stuff and her 2 cats dueling with our two cats. My son is home from college for the Summer as well, though he is still enrolled in a chemistry class. Somehow, he manages to get to that 8am class, four days a week.

Sadly, my mother-in-law died on May 24th. The funeral was at our church on May 28th after which we drove to Decorah, IA for the burial service. My father-in-law died 30 years ago and they are buried in the cemetery of his last parish. She lived near us for the last 14 years. It is sad to think of her leaving us after having such as gusto for life during her 94 years. It is now a big effort to deal with the estate and all of her collections of dishes, dolls and furniture.

One year milestone

2008-05-16T12:41:00.002-05:00

I should have posted this a week ago, but wanted to see the results first. I had a bone marrow biopsy on May 9 which was the anniversary of my transplant last year plus also my 60th birthday. I also had a phlebotomy on Friday to reduce my iron buildup. Over the weekend, my sinus drainage got worse and I had a slight fever Saturday night. Tylenol took care of the fever but I also continued with sinus drainage, a cough and some wheezing. I saw the Dr on Tuesday afternoon at which time he said that the biopsy was all clear, but that I had a touch of pneumonia. I am now on Azithromycin as well as my other medications.

The Viokase that was prescribed for my pancreatitis has cleared up my diarrhea. Dr is not sure how long I will have to take it. It is like all the other medicines that I am on. We will taper off the meds and see if any symptoms come back. I have now reduced my prednisone down to 30mg every other day.

My blood counts remain about the same with only low platelets being a problem. My INR (blood clotting) was a little low, but is affected by the multivitamin and antibiotics that I am taking. I am having more problems with dry eyes which seem to be getting worse. Overall, it is chronic graft versus host disease that continues to cause my problems and will for the rest of my life.

Through all of this, I continue get around and am enjoying life. I attended a two day workshop at the University, taking just a couple of hours off for my Dr appointment on Tuesday. My son and I also went to a Twins game on Monday night when I didn't realize that I had pneumonia. Last night, I took a short bike ride and hope to extend that some each day. Both my son and daughter will be around for the Summer as we need to help my wife recover from a knee replacement surgery planned for June 20.

GET SMASHED

2008-04-22T15:37:00.002-05:00

What do I mean by the title this time? Well, it is actually a useful mnemonic for remembering the causes of acute pancreatitis which the Dr thinks I might have. Steroids or autoimmune causes are most likely the problem. Actually, I am not sure if this would be chronic or acute pancreatitis since I have not had any pains except for cramps. My strange diarrhea has persisted for the last month and when I described how the nasty stuff looked and smelled, the Dr immediately related it to fat malabsorption. The Dr ordered a couple more blood tests to measure my amylase and lipase levels. I also got a prescription of Viokase 16 tablets which contains 16,000 units lipase, 60,000 units protease and 60,000 units amylase. I have to take 3 of these before each meal and one before a snack.

I also had another phlebotomy this afternoon. My hemoglobin was somewhat lower at 14.9 where two weeks ago it was 17.1. My platelets are still low at 81 so the phlebotomies do not seem to be helping that. The Dr told me to start taking multi-vitamins (without iron) that might affect my INR which was 1.48 today. I will have to get the INR checked again next week. My case is still strange as the Dr said he used me (unnamed) as an illustration in a recent lecture to all U of MN medical students.

The next big thing will be another bone marrow biopsy on May 9, the anniversary of my bone marrow transplant and also my 60th birthday. I see the Dr again on May 13th to get the results.

Second Phlebotomy

2008-04-10T13:35:00.003-05:00

I just got back from my second phlebotomy this morning. The blood certainly comes out faster than it went in before, only took 30 minutes for the whole appt. My hemoglobin was at 17.1 this morning and per the Dr's orders, they drained 500 ml. After a couple of Oreo cookies and some juice, I walked out not feeling too much worse for the wear.

After thinking about the 93 units of blood that I had transfused between June 2005 and last Fall, I decided to stop by and visit the Masonic Day Hospital where I received most of that blood. This is between the Philips Wangesteen Building where I have my BMT appointments and the Fairview University Hospital where I actually had the BMT. I believe that most of the nurses that helped me over those two years were there today and I had a great visit. For any of them reading this, I again thanks you for all of your help and kindness. They were all very professional and experts in their jobs.

After having lunch with a friend, I stopped by the Express Bike Shop in St. Paul, not too far east of the University. I donated four bicycles to their Back Door program (Youth Express) and encourage you to do the same. I had nine bicycles in my garage and needed to clean them out. Some neighbor kids took a couple and my son brought his to the university campus. That leaves two, one of which I need to work on. Now I just need to clean up the rest of the stuff including two broken snow blowers. Luckily, we did not get the 26 inches of snow that they got north of here last weekend. Real Spring seems slow in coming.

Update: Just saw this on evening news after posting earlier this afternoon:
Masons give $65M to UMinn for cancer research

First Phlebotomy

2008-03-27T12:45:00.002-05:00

After getting 93 units of packed red blood cells over 2+ years, the ferritin (iron) level in my body increased to unhealthy levels. The Dr has finally decided to address this and ordered phlebotomies every two weeks for the near future. We are not sure how long that will be seeing how long it was accumulating. I had my first one this morning. It is just like giving blood, except that they have to discard it. Seems like a paraphrase of an old joke is appropriate: It is better to have a lateral phlebotomy than a frontal lobotomy. (The original joke referred to a "bottle in front of me".

Interestingly, my phlebotomy was in the Apherisis lab where my brother donated his stem cells last May. In fact, I sat in the same chair next to the machine which filtered stem cells out of his blood over two days. It will be a full year on May 9th since that grand contribution to extending my life on this earth.

I also saw the Dr on Tuesday. My INR was down within range so my current level of warfarin will continue (2.5mg on Monday and 1.25mg every other day. Also I will continue my taper of prednisone (now 40mg per day tapering to 40mg every other day over the next month). My next Dr appt is on April 22nd though I will have another INR test on April 9 and another phlebotomy on April 10.

Horton Hears a Who

2008-03-23T07:36:00.003-05:00

On a whim last night, my son (home from college) and I saw a movie based on the Dr. Seuss book, "Horton Hears a Who". We went just to be entertained by this animated film, but came away talking about what meaning might be made from the script. In the movie, Horton, an elephant, discovers very small people living on a speck on a clover flower. He hears the very small voice of the Mayor of Whoville, but cannot see the residents. He carries the flower around the jungle, telling the other animals, but no one else believes him. As he rumbles around, he causes all kinds of problems (earthquakes, high winds, darkness) on the flower and in Whoville. The mayor likewise tells his town about talking with Horton, but again no one believes. They experience the effects of Horton, but don't hear him or believe that he exists.

Anyway, we thought there was symbolism in the movie about faith in God as well as listening to hear what God has to say. This morning, I woke up thinking more about this, reminding me of a CD that one of our church "Angels" gave me when I was in the hospital last May for my BMT. The CD is named "Be Still and Know [that I am God]" by Maranatha Music. As I listened again to the CD, it gave me great peace to know that He is in control. He will deliver us from all our troubles.

When I got up, I did a search on Google and found a number of different "theological" interpretations of this movie and other related Dr. Seuss books. Some relate to abortion where the little Whoville people are the unborn that are not recognized by the animals of the jungle.

Happy Easter! He is Risen!

Atom Subscribe Added

2008-03-19T12:06:00.003-05:00

Since my posts have become less frequent and I figured out how to do this, I have added an Atom Subscribe feed to this blog. You will note the link down on the right side where it says "Subscribe to Posts". Click on the "Atom" link and it should open a dialog helping you to set it up further.

Atom is similar to RSS and is supported by many of the same RSS readers. It works fine for me with my Macintosh Mail program and the Safari browser. There is actually a Subscribe to this Page menu item under bookmarks in FireFox as well. If it all works well, you should get the blog posts as soon as I enter them on this blog.

Back on track

2008-03-19T10:58:00.002-05:00

The return to using prednisone has really helped me over the past week. Actually within one day, most of my pains disappeared. I went from 5 mg prednisone every other day, a week with nothing and then back up to 80 mg every day. This week, I have reduced that to 60 mg per day and will taper more again in the following weeks. I have noticed that my digestion is not normal and a lot of foods that I eat seem to go right on through. I am hungry and eating way too much but not gaining weight. I actually lost 5 lbs during that one week where it was hard for me to even chew.

The last couple of days, I have been developing a pain in my left hip and leg. It was so bad this morning that I needed to have my son put the sock on my left foot. I could not lift my foot up to my knee without twisting my hip and getting a sharp jolt. The thought is that this is also a result of GvHD.

I will be interested in what my INR is when I get it checked tomorrow. It was so high last week that I did not take warfarin for 5 days. I have noticed some bruising so some blood IS leaking out.

On a positive front, I saw my eye Dr this morning and got a clean bill of health. I go in every 6 months now to avoid any complications from GvHD in my eyes. My eyes are a little dry so I use eye drops, but they are clear and my eyesight is not changing.

I have resigned myself to being out from work for another couple of months until we see where this is leading. We may need to try some more medications and address the iron build-up as well.

Regression

2008-03-10T15:18:00.003-05:00

It has been a rough week and a long day. I have reported my aches/pains and digestive problems in the previous post. I saw my BMT Dr this morning after waiting around for 2 1/2 hours. It took a total of 4 1/2 hrs of my day. All the while I was in pain with my right leg, knee and back: could hardly walk. Anyway, the Dr feels that since I had stopped taking prednisone that the GvHD has come back, attacking at least my joints and musculature. I was also able to leave a stool sample so they will test whether the GvHD of the gut is back as well. Either way, I am back on a high dose of prednisone and start a taper again, probably never getting off completely. Most GvHD patients end up on a low maintenance dose. The important point is that the Dr checked the "regressed" box and put "unknown" in the return to work date field on the form that we sent into the disability insurance company.

On a positive note my blood counts are all OK or improving. Platelets are now up to 107 though the normal range starts at 150. My INR was 5.4 but Dr feels it was affected by the Levaquin antibiotic that I have been taking. Target INR is still 1.5 to 2.o. So far I have not seen any blood leaking out anywhere since it is too thin. I will have my INR checked locally on Wed and then see the Dr again on Friday.

Remember that GvHD is essentially the new transplanted stem cells (immune system) fighting the old body. Seems like there may be a sermon illustration in that statement. My late brother-in-law once gave a sermon titled "The Old and New Nature". The sermon was based on Ephesians 4:22-23, “Put off your old nature which belongs to your former manner of life and is corrupt through deceitful lusts ….. and put on the new nature, created after the likeness of God in true righteousness and holiness.” Send me a personal email or leave a comment if you are interested in the complete sermon.

Aches & Pains

2008-03-08T09:21:00.002-06:00

It has been a miserable week. Started out ok with an INR that was done locally, saving a trip to the BMT Clinic. I am also getting my prescriptions at the local Walgreen's since my BMT Clinic visits are about once a month. My INR was 4.2, high above the target range of 1.5 to 2 so I skipped 2 days of warfarin and reduced the dosage some more. I will get that checked again on Wednesday.

Maybe unrelated to that, I started getting pains in my joints on Wed. The pain moved around from my left shoulder, to my knees, my right elbow and my left jaw. The left jaw pain became an ear ache as well and I could not chew without sharp pains in my jaw. On Thursday I talked to a BMT Dr who advised me to take some Levaquin antibiotic which I have in my "home" pharmacy. I last took it in January after taking it for 8 months. It seemed to do some good, eliminating most of the joint pain and reducing the ear pain. Maybe just a coincidence since yesterday the pains moved to my right ear and left elbow. The elbow pains may be related to my lying more on the side opposite my primary ear pain. Seems to be clearing up some this morning though I am tired since I didn't sleep very well the last few days.

I see my primary BMT Dr on Monday when I will ask him whether these pains are related to my going completely off of prednisone last Sunday. My recent strange, loose stools may also be related though I have not eaten much solid food with my aching jaw. It seems like some tomato soup that I had on Thursday went right on through so my digestion is not working correctly. I hope I am not reverting back to the GvHD of the gut that I had last June and July. I lost 65 lbs at that time, but have gained back about 20 lbs. I would just as soon keep off the weight, but not this way.

Anyway, your prayers are appreciated. Keep looking up.

INR & Peer Gynt

2008-02-26T16:56:00.003-06:00

Things are slow on the medical front. I was in for another INR (blood clotting) test yesterday and learned today that I have to reduce my Coumadin some more. I will have another INR test next Monday and then my next Dr appt on March 10.

Last Saturday, my son and I went to a play named "Peer Gynt" at the Guthrie Theatre. A good review of the history of the play can be found at Wikipedia. This is a play written by a 19th century Norwegian and most of it takes place in Norway. Portions take place in the Sahara desert and on the ocean. The Guthrie had a unique way to portray the sand dunes and waves with an undulating floor. (Note that YouTube has a couple of other videos of the floor, as well.)

Peer is a story teller that lives in a fantasy world. In the end he meets the "button moulder" who claims that Peer has not been himself and his soul must be melted down because he has no list of sins. I cannot say that I understand it all, but would enjoy reading the script for the play. The only version I have found so far in in Norwegian.

No more Lovenox

2008-02-18T23:11:00.002-06:00

I was in for a quick blood test today to check my blood clotting INR. I have been taking Coumadin since last Tuesday and my INR was up to 2.6. This was enough for me to stop taking the Lovenox injections. It is great to over with that after 9 months of sticking myself in the abdomen each day. Since my target INR is between 1.5 and 2.0, I will reduce the amount of Coumadin that I take. I will alternate between 5 mg and 2.5 mg each day and get my INR checked again next Monday.

The cough is still persisting, though primarily in the morning or after being out in the cold. It will be great when the weather warms up some. It was in the 30s for a few days and now back down to zero and headed lower.

Coumadin Again

2008-02-12T22:50:00.002-06:00

I saw the Dr today and am progressing towards getting off some of the medications. I started taking Coumadin again (for blood clotting) and will get my INR checked on Monday. If OK, I will stop the daily Lovenox injections, but will continue them until the Coumadin takes hold. Hopefully, when I get off the Lovenox (heparin), my platelet count will get back up to normal levels.

I have also stopped taking two antibiotics, Acyclovir and Levaquin. My prednisone taper is down to 10mg one day and 5 mg on alternating days. Another three weeks and I will be off prednisone, assuming no problems arise. I still have a little cough, but it is a lot better than it has been over the past six weeks. With the temperature below zero for most of the weekend, I have been staying in the house.

My JAK2 genetic test came back negative. It was positive before as it is for most MPD patients. It is another indication that my brother's bone marrow has taken over. Unfortunately, a Coombs test came back positive, indicating I still have problems with my immune system and red blood cell hemolysis. Possibly, the reductions in medications will help this to improve.

My ferritin level is at 4423, well above the normal range of 12 to 300. This is result of iron buildup from the 93 units of blood that I had transfused over the past 3 years. The Dr is contemplating using phlebotomies, with-drawing blood to reduce the iron level. It is too bad I cannot donate this blood. Not sure how many draws it would take since the transfusions were of packed red blood cells which certainly had a higher percentage of iron content than normal blood. An alternative is a drug named Exjade, but my immune system may preclude it.

Phlebotomy?

2008-01-30T18:43:00.000-06:00

I wasn't due to see the Dr for another 2 weeks, but decided I needed to get my cough examined. It has been around for a month now and the last antibiotic did not knock it out. So yesterday I called and set up an appt for Thursday, the earliest the BMT clinic could see me (not an emergency). Then this morning, they called me and said the Dr did not want to wait and asked me to be in by noon. I was there early for a chest xray at the Imaging Lab, but they did not have the orders. After waiting for 40 minutes I went up to BMT Clinic for my lab work and waited for another 45 minutes before they got to me. I went back for the xray which was then pretty quick. After waiting some more for the Dr who had been ready for me twice by then, the appt went pretty quick. The Dr prescribed another antibiotic which I then had to wait for at the pharmacy. I finally walked out at 3:30.

I also have a lump on my abdomen which the Dr says is a hematoma and should be watched for the next couple of weeks. Two weeks ago, I could sense something there, but the Dr could not feel it. It is not from all the Lovenox shots I give myself since it it higher up on the right side just even with my rib cage. Maybe I bumped myself there but there is no bruise there like there is many other places. Since I was called in a day early, I was not able to skip my Lovenox shot last night and get a good clotting test today. So it will be at least another 2 weeks before I can get away from these shots.

There was more good news today, following the 100% engraftment I found out about last time. Another test showed no evidence of the Antiphospholipid (Hughes) Syndrome that I also had before the BMT. If my JAK2 chromosome test comes back negative, I will be clear of all blood problems. That is except for my low platelets, though those were up to 90 today.

I will also be getting an iron (ferritin) test, but expect it to be high because of all the blood transfusion that I have had. The Dr is considering giving me phlebotomies in which blood (and iron in hemoglobin) is taken from me. As new blood is regenerated, it will pull iron out of my body's reserves. I am not sure how many times this would be needed, but there are other drug alternatives. The Dr is consulting with others for advice in this situation.

For those reading that are not in Minnesota, we had a 56 degree drop in temperature in about 18 hours. I cleaned all the ice off the driveway and patio yesterday when it was 42 degrees. This morning, it was 14 degrees below zero. Windchill was actually down about 40 below.

Eight months Plus

2008-01-15T18:11:00.000-06:00

Well, I am finally getting back to posting here. It has been 4 weeks, but that was how long I went between Dr appointments. Similarly, my next is scheduled out 4 more weeks. I had the BMT on May 8 & 9 so it has been 8 months now. The report today indicates that my blood is essentially 100% that of my brother who was the donor. Praise the Lord!

My hemoglobin also came in at 17.0, a new high and actually higher than my son had when he last gave blood. Unfortunately, my platelet count is still low at 73 and I still bruise easily. Additional blood clotting tests were run today to see my original clotting problems remain and whether I need treatment. I am still taking Lovenox shots to thin my blood, but that may be keeping my platelet count low. I would like to get back on coumadin or, better yet, not have to take anything.

My white cell count was a little high at 9.9, but then I have been nursing a sinus infection for almost 3 weeks. I have a few minor dizzy episodes which the Dr thinks was from the sinuses and my left ear which looked inflamed. I am now on 5 days of Azithromycin antibiotic, replacing the Levaquin that I normally take.

Since the BMT seems to have been successful, we are starting a taper of the prednisone over the next 2 months. I have been on 20 mg every day for the last month and will taper off 5 mg on alternating days every week. So this next week, I am taking 20 one day and 15 the next. Eventually, I should get down to 5 mg a day and then off completely. But then, it all depends on how things go. Looks promising though many BMT patients go through many cycles of less and then more prednisone. Some can never get off it completely. This is only my second attempt to get off the stuff, but then I am still taking 8 other medications as well.

Merry Christmas

2007-12-21T08:25:00.000-06:00

For those who check this over the next week, have a Merry Christmas and a Happy New Year! I have included a in-line copy of our family's Christmas letter at the end of this post as well. Thanks to all of you for your support over the past year. I am not "out of the woods" yet, but certainly feeling the best that I have over the past 3 or more years.

I saw the Dr on Tuesday and don't have another appt scheduled for 4 weeks. In previous cases, I have not made it more than two weeks before having to go in for something, but I am feeling positive this time. One reason is that my hemoglobin is even higher at 14.9, up from the 13.4 that it was two weeks ago. The normal range is 13.3 to 17.7 g/dL. Actually, my red blood cell count is still low at 4.1 billion/L, though that has also increased from 3.61 two weeks ago. RBC normal range is from 4.4 to 5.9.

Unfortunately, my platelets are still down at 70. Normal is 150-450 million/L. This affects my blood clotting and makes me easy to bruise. At my next appt, they plan to run more blood test relative to antiphospholipid syndrome. This was my original problem when I had the pulmonary embolism (blood clots in lungs) three years ago. I still give myself a shot of Lovenox in my abdomen every day and have not been able to switch back to the little coumadin pill. White cell counts are in the normal range at 5.3. Importantly, my liver tests are normal and my spleen is only enlarged a little.

Here is the Christmas letter:
----------------------------------
Christmas 2007

Grace to you and peace from God the Father and from our Lord Jesus Christ. Amen!

Hope your family is doing well. Here’s a rundown of news about our family:

We are thankful that Joel is doing quite well after his bone marrow transplant last May. He is on long-term disability, so enjoys staying at home, working with his old computer collection and fixing things around the house. We have finally replaced the driveway, patio and garage door. Joel is also keeping up on his career technology and learning new programming skills through the Internet. For a weekly update of his health progress, please go to www.myelo.com.

Marilyn continues to enjoy teaching English Language Learners at Hayes Elementary School in Fridley. Each day brings new challenges, but she is thankful for her job and for her fascinating students with different languages and cultures.

Anna is working on her master’s thesis and plans to graduate from Harvard Divinity School in 2008 with a Master of Divinity degree. She and her two cats spent most of the summer living with us in Fridley where she enjoyed a glorious summer of doing nothing but spending time with the family, biking, reading and watching movies. She does not currently have definite plans for next year but is expecting the unexpected.

Andrew has been enjoying his first semester at the University of Minnesota in the College of Biological Science. He has been taking honors classes and has been doing well. He is still considering pre-med and is planning to major in biochemistry and chemistry. We typically see him a couple of times a week as he helps out with the youth group at our church, Redeemer Lutheran, here in Fridley.

Marilyn’s mother, Eleanor (93) has struggled with serious health problems this year and has been spending the last few months in the Camilla Rose Nursing Home in Coon Rapids, MN. Marilyn spends as much time as she can with Eleanor.

Unfortunately, our beagle, Velvet, died in November due to kidney disease. Our two cats, Moses and Zacheaus, have taken over her begging role and seem more affectionate as well.

May your Christmas be a Christ-filled one!!!

Love, Marilyn, Joel, Anna, and Andrew

More diarrhea

2007-12-04T22:38:00.000-06:00

Everything was ok for 10 days and then I got another bout of diarrhea last Saturday. I had a Dr appt today, but could not produce a stool sample at the clinic. It has now been 12 hours since the last rush to the bathroom so maybe it is over. Dr wants me to cut back on milk and dairy products to see if that makes a difference.

On the blood count side, my hemoglobin was 13.4, about the same over the past three weeks and still in the normal range. My white cell count is also ok, but my platelets have dropped back to 72. This means that I need to keep taking Lovenox (blood thinner) injections. If it had stayed above 100, I could have switched back to coumadin tablets which I last used in April. Dr has also reduced my Prednisone and Levaquin doses so I am down to only 10 - 13 pills a day.

Otherwise, I feel pretty good. We have had snow twice in the last 4 days and I have shoveled a couple of hours each time. Yesterday, I even cleaned out my mother-in-law's driveway. I resurrected her old electric snowblower which had not been run for over 30 years, but then hit a piece of wood under the snow and sheared the auger pin. I fixed it this morning and will get back over there tomorrow to clean up this latest snowfall. My 25 year old gasoline snowblower has a frozen exhaust valve that I am also repairing.

Diapers

2007-11-20T18:13:00.000-06:00

Things change quickly. At my Dr appt last Tuesday, I had good news about my bone marrow and hemoglobin. Then on Wed, I developed diarrhea. On three occasions before Monday, I didn't make to the toilet in time and had a mess to clean up. I called the BMT clinic on Monday and arranged for an appt at 1pm. Since I was running to the bathroom every 1 to 2 hours, I had to pick up some Depends at the local Walgreens and wear my first 'diaper' in over 55 years. Then at the clinic, the diarrhea held off for 4 hours though I was able to get the lab a stool sample before I left. When I got home the original 1 - 2 hour cycle started again. Seems like it might be easing off some today.

The Dr is concerned that the Graft versus Host Disease (GvHD) may be returning. That was diagnosed in July after I had lost over 50 lbs. I had some diarrhea back then but nothing comparable to this. I have a colonoscopy scheduled for Wed afternoon and have changed some of my medications. Now, I am essentially fasting and need to take 3 different laxatives and get an IV before the colonscopy. I still have an appetite and am looking forward to Thanksgiving dinner.

On the good side, my hemoglobin is still at 13.6 and my platelet and white cell counts are improving. The white cell count was 4.6 (in the normal range), but may have been responding to whatever is causing the diarrhea. Either way that is good since it is responding correctly.

5000 Served

2007-11-13T19:35:00.000-06:00

Great news today. I found out that my bone marrow is now 87.6 % from my donor (brother), a big change from the estimate of only 30 % last month. This latest is direct from the biopsy that I had last week, while last month, it was from a blood test. It is possible that the blood test reflected destruction of cells by my old immune system. Anyway, it appears that the problem may be resolved since my hemoglobin was 13.6 today. This is a new high and actually in the normal range of 13.3 to 17.7 g/dL. Unfortunately, my white cell and platelet counts are still very low and I need to be cautious of infections and injuries. Every little bump now causes bruises.

Relative to this blog title, the BMT clinic was having a celebration today of having performed 5000 bone/stem cell transplants since they started with the (world's) first in 1968. I got some cake and a tee-shirt that says "What's in your marrow?" on the front.

Biopsy #9

2007-11-07T19:12:00.000-06:00

I had my 9th bone marrow biopsy this morning. The first was in Feb 2005 and I have had 5 since the first going into the BMT at the end of April. I won't know the results until next week, but this was one of the easiest. Each time, I have about three holes drilled in my hip bone, typically alternating between the two sides. They need about 5 cm of bone marrow that is about 3mm in diameter. Then they extract 3 vials of blood with a separate needle that does not use one of the marrow sample holes. These holes heal and form scar tissue which make it more difficult during future biopsies. This was done under just a local lidocaine injection and no other pain killer since I drove myself today. It is the aspirate part that hurts the most because of the pressure change within the bone marrow where lidocaine has no effect.

On another note, my blood test today showed my hemoglobin going up to 12.4, the highest it has been since I started recording in June 2005 when I had my first blood transfusion. For the record, I have had 46 blood transfusions and 93 units of blood, though only 3 and 6 since just before my BMT. My white cell and platelet count went up a little today as well, though all blood counts are still below normal. My CMV test from last week was also negative. I look forward to getting the biopsy results next and seeing where I go from here.

Comment changes

2007-11-05T15:44:00.000-06:00

I have been getting a lot of spam comments on this blog (145 just today) so have changed some of the setup. You will have to enter that funny character string and I will have to approve the comment. I have not figured out how to delete comments after the fact so at least this may clean up what you see.

As always, your comments and support are appreciated.

Looking up

2007-11-01T20:16:00.000-05:00

I was surprised on Tuesday when my blood test showed that my hemoglobin was up to 11.4 from 10.4 last week. It had just been 2 weeks since it was 8.4 and I had a blood transfusion. Going in, I was feeling somewhat dizzy and tired, but surmised I may have been low on fluids and am trying to drink more. On the down side, my white cell count dropped from 1.6 to 1.4 and platelets from 88 to 64. Both are about half of normal though my Hgb is also still below normal as well. The Dr took me off of Acyclovir and Bactrim DS and reduced the prednisone to 40 mg every day.

I have my 6 month bone marrow biopsy on the 7th and the next Dr appt on the 13th. Hopefully, we will then know more details of how the engraftment is progressing. I had blood drawn for a Cytomegalovirus (CMV) test as well.

Other than that, I am feeling pretty good and getting things done around the house. I was also approved for Social Security Disability (SSD), though that payment will go to Aetna insurance to offset my long-term disability payments which are now being coming through. It is rare that anyone is approved for SSD on the first application and it normally takes 2-3 months for a response. I must have impressed them with my medical history.

Stable again?

2007-10-25T00:02:00.000-05:00

I was into the Dr on Tuesday and my hemoglobin has stabilized at least for a week. After the blood transfusion a week ago, it should have gone up two points to about 10.4 and that is where is was this time as well. The transfusion was with A neg blood which may have affected the higher level as well. Since I am A pos, I can get blood from A or O, either pos or neg.

My white cell and platelet counts are somewhat low though which will also need watching. The Dr has adjusted my prednisone down a little and I have an appt again next Tuesday.

Other than that I am feeling ok. My son and I traveled to Chicago last weekend and attended a TI99 home computer faire on Saturday. The Chicago User Group sponsors this every year to share and exchange hardware and software for this 27+ year old computer. About 20 people attended with a few reporting from a similar meeting in Germany last month. There is an internet based user group of over 500 members to which I belong.

We went downtown Saturday night for Gino's famous deep dish pizza. We walked part of the Magnificent Mile shopping area, visited the Apple Computer store and paid $32 for 3 hours of parking. Sunday, we visited the Science Museum for 5 hours and then drove back to Minneapolis. Traffic in Chicago was terrible, taking us an hour just to get from downtown to the O'Hare airport area. I made it home about 12:45 AM and slept later in the morning.

Further setback

2007-10-17T23:31:00.000-05:00

I was in yesterday for a blood transfusion and a further talk with my primary Dr. I discovered that my blood cells are now 30% donor (my brothers) and 70% my original. A few months ago it was reversed and supposed the change is in the bone marrow as well. In this light, the Dr has recommended that I do not go back to work on Friday.

I also met with my employer HR and health departments, who advised me that starting work on Friday would delay the start of my LTD payments. I would have to work 60% time just to offset what LTD will pay if I am not working. So, I will be classified as a "suspended" employee and will still be part of the company group plan as far as insurance benefits are concerned. I will be billed for my share of the costs and will have to pay those out of my LTD monthly check. There are also a lot of other benefit and organizational changes going on at work so I plan to let that situation settle down and consider going back to work in early 2008. Of course, there is no guarantee that my job will be there to return to. Hopefully, by then, my medical situation will be figured out as well.

Your prayers and support are still appreciated.

Flashback to April

2007-10-15T16:00:00.000-05:00

Seems like I am back to my situation back in April. Though not scheduled for a Dr appt for another two weeks, I sensed that my hemoglobin was low. I was tired, out of breath with little exertion, dizzy spells and getting slight headaches. So this morning, I called in and arranged for a blood test this afternoon. Turns out that my Hgb was 8.4 and white cell count was 2.3, both the lowest that they have been since I left the hospital in late May. My platelets are up to 133, the highest since before my BMT.

So, I will be in for a blood transfusion on Tuesday and the Dr has increased my prednisone. I have been on 20 mg every other day and now moving to 60 mg every day. I assume that after this, I will feel pretty good again. I was approved for long term disability pay through insurance and await a response from Social Security. I am seriously considering going back to work 1/2 time to see how that works out. It will seem like April again, working with regular trips to Dr for blood transfusions.

Over the past month, I have been taking inventory of my old TI99 computer collection and plan to travel to Chicago for a computer faire on Saturday. My son will help drive and we will stay part of Sunday to sightsee as well. My first home computer was the TI99/4 in 1980. I now have about 10 spares, 150 cartridges and miscellaneous hardware. There were close to 500 different cartridges produced, many after TI discontinued the computer in 1983. My most recent addition was a newly developed hard disk interface with a 2GB HD. There is still an internet based user group with over 500 members, 50 of which will probably show up in Chicago.

Day 136

2007-09-22T09:46:00.000-05:00

It has been a few days since my last Dr appt on Tuesday. My hemoglobin has dropped from a high of 11.5 on August 21 to 10.2 on Tuesday. Dr is still concerned about hemolysis (breakdown of red blood cells) but sees less jaundice in my eyes. He has added folic acid back to my medicine list. I took folic acid for several years, but stopped when I entered the hospital in May. I have also transitioned off the GenGraf and MMF, reduced Prednisone and started back on Bactrium. I am not sure if it associated but my appetite has reduced and taste has changed.

I have applied for both LTD (long term disability) from Aetna and Social Security Disability. I heard back from both about questions and their initial positive impressions. My short term disability from my employer ends on October 18th and, if approved, Aetna LTD would start October 28th. The SSD will take several months and will only offset part of the Aetna LTD. I will discuss possibly working part-time with my Dr at my next appt on Oct 2. The next month will be a time of some major changes either in my daily activity and/or income level.

Day 123 Changes

2007-09-11T19:23:00.000-05:00

My health has still not settled down and changes are underway. I am still feeling pretty good though experienced some nausea, stomach cramps and diarrhea in the past week. I will probably be experiencing more as I back off some of the medications.

My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.

Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.

My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.

Day 115

2007-09-03T17:06:00.000-05:00

These postings are getting further between since I have little to report on my health. Everything is pretty stable and it is two weeks between appointments now. My last was on Aug 28th so next is on Sept 11. My blood counts are good with hemoglobin staying above 11 (11.4 at last test). Dr is still concerned about seeing some hemolysis so it should be higher. They are also watching my urine since some blood and protein were noticed a few weeks ago. I have now reduced my prednisone to 90mg every other day from the every day when I started on it.

We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.

I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.

BMT + 100 days

2007-08-18T08:53:00.000-05:00

Actually my 100th day since the bone marrow transplant passed a few days ago, so I have made it pretty far since entering the hospital on May 1. I had my 9th bone marrow biopsy on Thursday when they tried some new needles which seemed to work better. My biggest problem with the biopsy is lying in a cramped position which affects my arthritic knees. The quicker it goes, the better. I get some results back on Tuesday but don't expect any surprises.

I am feeling much better the last couple of weeks and am starting to get out. Did some shopping for a car battery and carpet for our washroom. Dr says I can stop using the mask and go to church on Sunday. Hope to see some of you there. We also plan to take a trip to the cabin in Bemidji next week. This will be the first time for me since Andrew and I were there in April and saw the ice go out. All of my care givers go back to teaching or attending school in a couple of weeks, but I am getting pretty independent and now driving as well.

While I am proceeding with applications for long-term disability and social security, I may be back to work before mid-October. Still need to taper medications and see how I react to the changes plus build up my endurance. A short trip out shopping or working around the house still tires me out. Still need approval from the Dr before going back to work

BMT + 3 months

2007-08-07T21:43:00.000-05:00

It will be three months tomorrow since the first day of my BMT on May 8th. Besides the GvHD which seems to be coming under control, I am feeling pretty good. I have stopped losing weight and starting to gain again. Due to the prednisone, I have an appetite, somewhat uncontrollable. I am starting a taper of the prednisone from 90 mg every day to 40 mg on alternating days. I have little nausea and normal bowel and urinary functions.

My blood counts were all within reason today though platelets and hemoglobin are still a little low. I did not need any fluids today, but there is still a question about a possible blood infection. So for the first time since May 2, all tubes have been removed. The PICC line that was put in several weeks ago was removed so next time they will start picking me with IV needles again.

But for the first time, I don't have an appointment for a whole week. The Dr says that I can even leave town and travel to the lake cabin in another week. Possibly in a couple of weeks, I can get out in public as well. It all depends on how things improve further. I did make it to the neighborhood party this evening though wore my mask and did not shake any hands.

35W Bridge

2007-08-02T13:25:00.000-05:00

Just a note that we are all safe after the collapse of the 35W bridge yesterday. We had many calls from relatives since we drive close to it for every doctor appointment. We drive down either Washington Ave or University Ave near each end of the bridge though rarely cross the 35W bridge itself. Just last week, Anna and I drove across as we detoured to stop at the Dinkytown post office. Now have to contend with detours on the Washington Ave side from I-94. Our prayers go out to all the affected families.

I just got back from an appointment where things are going better still. Got some more fluids and they took some more blood cultures to check on the previous infection. I am back on GenGraf since my kidney function has improved and will start a taper on the prednisone next week.

GvHD + 84

2007-07-31T18:48:00.000-05:00

Only 9 days since last posting so doing better with only 4 appointments to report. Still battling potassium and creatinine levels in my blood, indicating possible kidney problems. So I get IV fluids on each visit and need to keep drinking more water. There have also been more adjustments of medicines to help out. The prednisone is helping my appetite, but I still don't have my taste buds back. I have lost a few more lbs so my gut is probably not absorbing enough yet as well.

As part of the GvHD treatment, I am participating with a Fred Hutchinson Research Study where I either get MMF or a placebo along with the normal treatment. This is another 8 pills a day, though they could be what I took during the engraftment phase. This study could last up to two years and is meant to determine whether MMF helps in the GvHD phase. Note that the study is not listed at the web site so may be closed to participating research groups.

Not sure when I will be back to work. Earliest may be 2 months due to immunity problems and need to stay relatively isolated from people. Otherwise, I am feeling much better and getting things done around the house.

Hospital again + 75

2007-07-22T19:15:00.000-05:00

Sorry that it has been almost 2 weeks since I posted. The week of 10th, I was into the clinic everyday and couple unplanned to get fluids. Most of the tests were negative for GvHD except for the D-Xylose test that I had last Tuesday. Just got results back today from Mayo Clinic and it definitely indicated GvHD. I am now on 90mg Prednisone per day and added CellCept back for treatment as well. Got to drop Ursodiol but added 4 "horse" tablets of Bactrim each day.

Also the clinic had taken blood cultures for several days starting the 13th. They got the first results back on Tuesday (after I got home from a day of D-Xylose) and had me go straight to the hospital. I didn't feel too bad but Drs were worried since it was a very septic infection in my blood. On Wed, they pulled out my central line and ran cultures on that as well. On Thurs, they ran a PICC line which accomplishes the same purpose as the old central line. It hangs out of my right bicep area down to my elbow, dangling frrom under any short sleeve shirt. I got out of the hospital about 1pm on Saturday and was back at the clinic at 8:30 this morning. Already have appts for Monday and Tuesday and probably more this week.

It is good to have some confirmation of why I have not had an appetite and I have lost weight. Official weight from this morning was 197 lbs, 70 lbs less that my bloated high back in May and 55 lbs less than when many of you saw me last.

Thanks for all your prayers. Last Monday, after my sister came back from a 2 week mission trip to Brazil, we had a family prayer meeting at my house. Little did we know that the blood culture test that may have saved my life was already underway. Just a few days later and results could have been much different. God works in mysterious ways.

Day + 63

2007-07-10T19:02:00.000-05:00

Well, I went down hill after Friday and had to go into clinic on Monday for some more magnesium and fluids. This helped me some but now I get more blood on Wed. I saw the Dr again today and will again on Thurs.

Other than hemoglobin, my blood counts are ok. Dr. also reported that my last bone marrow biopsy looked good with all cell lines growing well and still showing engraftment. Since none of the tests confirm any acute GvHD, the Dr ordered a lip biopsy which was done this afternoon in the Dermatology Clinic. They took a piece of salvia glnd from inner lower lip and a sample of some flaky skin. They also examined my whole body for anything suspicious.

Dr. thinks that I may have chronic GvHD which normally occurs after 100 days. If it is cGvHD, treatment would probably be Prednizone and could continue for several years.

Day + 59

2007-07-06T17:34:00.000-05:00

What a difference a few days make since I have been feeling much better since Tuesday. This was somewhat tempered by getting up early this morning and having both a sigmoidoscopy and another bone marrow biopsy. I still have little appetite but diarrhea and dry mouth have let up.

The initial sigmoid test was negative for GvHD though samples were taken to be analyzed. Other tests of stool, urine and blood culture have also been negative. Blood counts are ok except for the hemoglobin which keeps dropping. I am also now taking eye drops for dry eyes.

The bone marrow biopsy went very well this morning, taking 1/2 the time of the last. The difference was experience of who did it and use of a bigger (8 gauge) needle. I have my next Dr appt next Tuesday when I will learn more from the biopsies that I had today.

GvHD, in answer to Lori's question on the June 12 post, is basically when the new donor white blood cells attack rapidly growing host cells. This is beneficial when the the attacked cells are remnants of previous cancers (tumors). It it not pleasant and can be life threatening if the cells are GI tract, lungs or liver. Skin or eye GvHD can also occur.

For Joyce, my top rating on fireworks, viewed on a 46" HD TV, is for Boston. Of course, the only other one I watched was New York. NY was 30 minutes long and seemed to be launched from a broader location. Boston was only 20 minutes and seemed more concentrated. Both were choreographed to music, but you can't beat the Boston Pops Orchestra for smooth medley transitions. I especially liked the Sesame Street song synched with fireworks in the shape of a toy block or the numbers 2 and 3. NY synched those with "Take me out to the ball game". Over all, I would have much rather been with my son and daughter in Bemidji, watching their fireworks from the beach.

Day + 56

2007-07-03T21:08:00.000-05:00

Well, the GvHD question is open again. I was in for an appt this morning after generally not feeling too good the last few days. I have been fighting bouts of diarrhea on Sunday and Monday, but am thankful clear at the moment. Didn't sleep very well last night because of dry mouth.

My creatinine has been high due to the diarrhea and lack of kidney function so I still try to drink at least 8 cups of water a day. I essentially have no appetite but try to eat a variety of food, never able to finish even 1/2 a normal portion. The clinic gave me more magnesium and fluids IVs today. I was told to come in Thursday as well if I have more diarrhea and dry mouth.

Any way, I had a stool sample, a urine sample, and a chest x-ray plus special blood cultures taken. X-ray was ok; no fluid in lungs. I go in Friday at 7:30am for a sigmoidoscopy followed by another bone marrow biopsy. I also had a Schirmer test for dryness in my eyes. This is done by placing a piece of paper under the lower eye lid and measuring how many tears are produced.

I look forward to my July 10th appt to get the results of all these tests and determine what we do next.

Keep looking up!

Day + 51

2007-06-28T18:02:00.000-05:00

I was to the Clinic twice this week, once on Tuesday and then today. On Tuesday, we learned that the endoscopy showed no GvHD in the upper GI tract but I was still having some diarrhea so I was told to obtain another stool sample. My hemoglobin was down to 9.1 the lowest it has been since before the BMT. My creatinine level was very high reflecting lower kidney function so I also received some IV fluids while at the clinic. The Dr also dropped the GenGraf for a few days and lowered the Acyclovir.

So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.

I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.

Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.

Day +45

2007-06-22T09:59:00.000-05:00

This is my second report this week in only four days. It has been 45 days since the BMT and possible GvHD is still under investigation. The stool sample from last week was negative, but the results of endoscopy on Tuesday were less certain. I will get a final report on the endoscopy next Tuesday.

I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday

Day +41

2007-06-18T09:16:00.000-05:00

Hopefully, I can get a status post out more frequently, but it seems like weekly now. It has been 41 days since the BMT and I may be in a GvHD phase now. Last week, I had three appointments and spent over 14 hours at the clinic. Thursday stretched out with a decision to give me fluids and a blood transfusion. My regular Dr is on vacation so the PA thought they could get the blood in before we left for the day. The blood bank reported back that they still needed more time to match my blood because I still have the extra antigens that existed before the BMT. It is unknown whether those will be eventually cleared up. So we were back in on Friday for another 4 hours. Both the fluid and blood have perked me up some over the weekend

There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.

GvHD + 35

2007-06-12T21:26:00.000-05:00

Sorry for the delay in posting but things have been pretty boring. Each day seems like the next, but today may be the start of a new phase. I have been tired recently, napping several times a day or falling asleep watching television. I now see the doctor about twice a week and am gradually reducing medication (now down to about 30 pills a day).

After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.

It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.

100% Donor cells

2007-06-04T18:40:00.000-05:00

The results of my bone marrow biopsy shows 100% total donor engraftment. The doctor even seemed surprised when he pulled up the results on the computer this morning. This means that my brother's stem cells have taken over and eliminated my old defective bone cells. My hemoglobin reached a high of 11.9 and platelets have increased from 51 to 79 in the last 6 days, more evidence of the new cells. On the negative side my magnesium was down so I needed an infusion today and my creatinine is up to 1.68.

The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.

But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.

BMT + 25

2007-06-02T20:34:00.000-05:00

Well, its Saturday and I did not have to go to the Dr today. Yesterday, the Dr said that everything was normal, at least as good as expected for me at this time. My hemoglobin and platelets are still below that for an average person, but still where they should be for a BMT patient. Of course, as long as I am taking all these pills, it is a propped up normal. They gave me more magnesium on Thursday but did not need to on Friday. I get the day off tomorrow as well.

The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.

On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.

BMT + 22

2007-05-30T21:59:00.000-05:00

Today was another long day at the BMT Clinic. I forgot to mention yesterday that I had a chest x-ray which the Dr said today showed fluid on my lungs. He ordered an EKG and an echo cardiogram which I had this morning. He wants to rule out any heart problem that might cause the lung fluid retention. We won't know results until tomorrow.

I also had an infusion of 4g of magnesium today. That's the equivalent of 10 pills. I am now taking 4 pills a day at home. These two seem to be the major issues for the moment while we wait for results from the bone marrow biopsy.

With travel, we were away from home 6 hours and then behind on medicines. My wife drove me home and then had to pickup my daughter (backup support) at the airport. Tomorrow, my son graduates from high school while I watch on cable TV. Sunday afternoon, he has a party at church while different family members take turns visiting with me about 1/2 mile away. It is great to now have both daughter and son to help in the home care. My wife returns to teaching school for another week. I feel like a king in my throne (recliner) while people do things that I cannot do. Most are things I could do, but need to minimize exposure to germs.

BMT + 21

2007-05-29T18:20:00.000-05:00

It has been three weeks since the the BMT and 4th day home from the hospital. It was Bone Marrow Biopsy day, the sixth one that I have had. This one was the longest and most uncomfortable because of my position on my nauseated stomach for over an hour, plus numbness forming in my neck, hand and feet. There is a a lot of scar tissue in my hip bones and it is getting more difficult to get a good sample. They had to drill into my hip bone three times. The pathologist who is going to examine the marrow did the procedure so we know he got a good sample.

I also had another platelet infusion as a precaution against bleeding. It is still uncertain whether the BMT will also cure my anti-phospholipid syndrome problem. blood counts were about the same and I lost another 2 lbs of fluid. From the max of about 20 lbs fluid gain, I have about 4 left to lose.

I take about 49 pills a day plus one injection. The cyclosporine (GenGraf) was reduced from 250 mg to 200 mg twice a day. I take pills about 6 times a day, trying to eat some before each session.

At home

2007-05-27T15:20:00.000-05:00

It is great to be at home and my condition has improved. My creatinine level has decreased some more to 1.49 while my hemoglobin has increased to 11.1 probably the highest in 3 years. White cell count is up a little in normal range while platelets are still struggling at the low end. Most importantly, my fluid retention is decreased and I weigh about 6 lbs less than when I left the hospital, but I still weigh about 6 lbs more than when I checked in.

I keep feeling better and eating better every day, but still feel nauseated after eating just a small portion of food. Taking all the pills don't help either. My taste buds, saliva generation and smelling still have not fully come back.

My wife and son are great support with all kinds of little supplies to buy or find for me. The brake light on the van and the ceiling light in the bedroom burned out. The furnace filter needed to be replaced. The lawn needed to be mowed and plants watered. A lot of things that I cannot yet do myself.

Going home

2007-05-25T07:53:00.000-05:00

Groundhog Day is over. It is the first day of Summer. My creatinine level is down and I am going home. My wife is working today and there is a lot of follow up work to do here, so I will not leave until 5pm.

I still need to get a list of everthing to do at home and all the supplies and meds from the hospital discharge pharmacy. It will be great to sleep in my own bed, use my MacBook Pro laptop with the 20" LCD monitor and watch my HD wide screen TV while lying back in my recliner.

Each of the last three days, I have lost hair while taking a shower. The picture above was just taken with my laptop camera and shows the current state. Seems like the dark hair has fallen out and I am left with the grey. I am also still shaving so maybe I will retain some hair on my head.

I will still be coming into the clinic every day and updating my blog, so check back. I appreciate all of your prayers and support over the last 25 days while I have been here at the hospital.

Groundhog Day 2

2007-05-24T07:44:00.000-05:00

I will be here at least another day. My creatinine dropped only from 1.9 to 1.8, not enough change to let me go. They are putting me back on a reduced dose of cyclosporine (GenGraf) and will reevaluate again tomorrow. I have also had about an hour of magnesium IV each day.

More hair fell out yesterday when I showered, but still have enough to say I am not bald. I shaved again this morning so that is still growing. To bad that I cannot switch those two.

Groundhog Day

2007-05-23T08:17:00.000-05:00

It feels like Groundhog Day, the movie. where Bill Murray keeps experiencing Groundhog Day over and over.

As I speculated, my Creatinine level, which indicates kidney function, is too high this morning. Creatinine went up from 1.68 to 1.94 and needs to be going down before I am discharged. They are stopping one medicine to counter GvHD for the day to see if that affects it. Otherwise, we repeat yesterday and see what the Creatinine is tomorrow. So I will be here until at least 5pm on Thursday.

Other blood counts are up slightly, which is good and shows bone marrow is functioning. Another bone marrow biopsy next week will show whether it is my brothers bone marrow. But the fact that Hemoglobin has been over 10 since May 11 is a good indicator.

BMT + 14

2007-05-22T13:00:00.000-05:00

Situation today is similar as it has been though I have lost some fluids and weight. My platelets were down to 77 today, but white cells and hemoglolin are holding their own. Creatine was up slightly and again may be the deciding factor of whether I go home on Wed. All of these are be adjusted with other drugs at home as well as here. I do feel better today and want go home where I can get more exercise which will help to lose more fluid. I will be back to the BMT Clinic everyday for blood tests and further IVs if necessary.

I took a discharge class this afternoon and should know by about 11am if I will be discharged. It will be a day to day basis of review and decide. My wife is prepared to take days off from teaching, but would work a full day and I would leave here about 5pm.

My hair is falling out and thinning. Today, while taking a shower, it was coming in gobs, but doesn't appear too bad. I am not bald yet.

The physial therapy department signed off on my discharge after session with them this afternoon.

BMT + 13

2007-05-21T21:48:00.000-05:00

I had a pretty good night for sleeping last night, though up every hour to the bathroom and up at about 5 AM to write instructions for cleaning the house before I come home. Then about 8:30, I had my breakfast of 16 different pills. My planned breakfast came about the same time as the pills, but I needed to get the pills down first. I was still water logged and weighed in at my highest of 121 kg, almost 20 lbs more that when I checked in 3 weeks ago. The major concern now is my fluid retention versus the health of my kidneys. My creatine level is up to 1.52 so any diuretics were stopped over the weekend.

I was not able to eat much breakfast, needed to walk and excercise, but did not have the energy. The fluid retention was still restricting my lung capacity and breathing. I was just laying around, feeling sorry for myself, getting up for the bathroom when necessary. Then, my sister, my younger brother and my older brother (the donor) called is succession. Being just uplifted by their calls, an angel from physical therapy showed up to help me walk and exercise.

Since she was following the book, she offered me either a cane or walker, like waving a red flag in front of a bull. Previous times I have pushed the IV pole around, but didn't need to take that with us. Unencumbered, I took off while she followed with a back up wheelchair which I needed to use 3 times to catch my breath. I walked up and down 13 steps on the stairs with no problem, proving that my problem is oxygen input. The paper mask, which I need to wear, also restricts my breathing. We also whipped through some of the physical excercises with no problems.

In the previous writing, I skipped the fact that all my meds have been switched from IV to pill form and the nurse disconnected all IVs just before my physical therapy. I also received a diuretic about the same time, so have passed a lot of fluids today. I feel that I have passed the hurdle of fluid retention and may be able to go home in a few days. Food tastes better, especially the Ghirardelli chocolate and and Code Red Mt Dew that I had this evening. I am having 3 BMs a day so that end is working as well. My wife, son and I attended a central line maintenance class this afternoon after which I took a 2 hour nap which was te best sleep that I had since coming in 3 weeks ago. I expect more of the same this evening.

My labs show that my hemoglobin has been over 10 for the past week. My white cell count is back down to the 3000 range. My platelets are back over 100 so I am back on Lovenox, a blood thinner. The Lovenox is a precaution until the Drs determine whether the BMT solves my blood clotting problems. Tomorrow's labs, including creatine, will be interesting to see and will be a big factor in when I go home.

BMT + 12

2007-05-20T12:15:00.000-05:00

Last night was my best yet for sleeping, though the heat went out. Rumor is that a major boiler failed. It was down to 66 degrees, but now warmed up to 72 now. I try to keep it set at 68, but thermostat does not control very accurately, plus the air filtering system keeps a constant airflow in the room. I sleep better when it is cooler, but I also had less noise because of less IVs. Docs are changing from IV meds to pills. Seemed like only one was running last night. Less IVs also mean less fluid retention up and less urination.

My platelets are also higher so I go back on the Lovenox anticoagulant. If I can get rid of the fluid and get an appetite back, I may be sent home this week. Then my problem will be care giver support at home and daily BMT clinic visits since my wife works until June 7 and my daughter and son will not be out of school until May 30.

BMT + 10

2007-05-18T08:18:00.000-05:00

This is the 17th day since I checked in the hospital for related donor mini BMT. Doctors tell me that I am doing very well. My white cell count is up more to 3200 and my hemoglobin is at 10.3. My platelets are 53, still too low. I will get more platelets today. Certainly, the nausea, lack of energy will continue, especially after 4 therapy sessions planned for today.

Update 8pm - Around midday, just after the Dr parade passed through (and talked with Lavelle), I noticed numbness in my toes. I could hardly stand due to pain in my ankles which were swollen due to more fluid buildup. I have had more diuretics and am now wearing support hose, just like my mother needed in her later years. The therapy sessions are a help by improving my circulation. [A nurse told me about another potential solution that another male patient used. Picture the combination of Depends held up by suspenders.]

I feel great at the moment, just wondering what is next. Probably, hair loss? I have not figured out what this means for the long term, but will sure have much more sympathy for people in pain or the latter days of their life. Quoting Richard Bach, "Here's a test to find whether your mission on earth is finished: If you're alive, it isn't." Credit given to Kirk Weisler, Chief Morale Officer.

Day +9

2007-05-17T22:04:00.000-05:00

Sorry for not posting for 4 days earlier, but I have just not the energy, plus they keep me busy. I have not had an appetite and then have had nausea most of the time. I seem to be breaking out and forcing myself to eat despite the taste. I gained at least 15 lbs of fluid and then have to take diuretics to get the fluid.

Guys, specifically, the fluid goes "everywhere" and can be very uncomfortable. It also seems that I have a urinal strapped to each hip. I have tried many setups, buy decided the best strategy is to dress lightly for quick release and always have a urinal close by. Sorry to say, I was slow on the draw a few times.

I got out of my room for some physical therapy today. Will have to walk around and do some exercises 4 times a day. Seems like they are trying to get rid of me, but just preparing for going home some time around May 30. My white cell count is up to 2200, about 1/2 of what is was when I came. Platelet count is 46 and I received another platelet infusion this evening.

Keep looking up.

Day +5

2007-05-13T13:53:00.000-05:00

Sorry that I have not posted recently. My wife and brother have been keeping up better on the CaringBridge site. Everyday something changes, but in general I have a bloated feeling of indigestion. One day I also had Premature Artial Contraction, which the heart Dr told me not to worry about. This morning I had shortness of breath and was given a chest xray. I have also gained at least 12 lbs, which must be in fluid so they have started more diuretic. So I am know tied to a minimum of three tubes and then have to jump up to get to the urinal. So far I had no diaherra but that have been some quick calls through all the tubes and power cords to get to the toilet.

The drugs are now to prevent or fight infections and to head off Guest vs Host Disease (GvHD), but they all cause nausea. So far I just had one bout of vomiting, which was lite after one bite of sugar cookie and some water. I lay in bed listen to the tv, radio or CD and then fall asleep, waking in the middle of something else. Hours run together and I sometimes am not sure which reality that I in.

The doctors are all reassuring and say I am experiencing what most other patients do and that I am doing very well. As my brother said recently (Psalms 23) "He makes me lie down... he leads me. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me." When I think out to all my support group, including all of you reading this, praying for me, nursing or doctoring or communicating , "Surely, goodness and mercy will follow me all the days of my life"

Day 0 BMT

2007-05-08T21:03:00.000-05:00

I have a few rough days where I did not even think about posting my status. My wife posted on The CaringBridge site and I have yalked to many of you and appreciate all of your thoughts and prayers.

The first part of the BMT took place this evening after my brother donated his stem cells earlier. He said that they only harvested about 80% of what they needed so will be back tomorrow. The first transfusion has caused no side effects yet and I am feeling pretty good. I survived a bout of premature artial contractions yesterday and more nauusa today.

My family had a prayer service for me from 5 to 6pm today while I listened to a great CD from an angel at our church. People from all around the world were praying, even people of Brazil. I could feel the power of God taking holding the BMT. It is the start of a new life, a new birth. That it continues tomorrow is even more symbolic. I am 59 years old on 5/9.

Status Day -4

2007-05-04T21:29:00.000-05:00

The process is still being pretty good to me. I have survived the worst of the chemo without nausea, but expect that as it reaches its goal of wiping out my immune system, the worst is yet to come. I have great support from many people; family, church, work and old friends. I cannot remember all the prayer chains that people have told me about. I have had six visitors today. I sincerely appreciate all of your support and my prayers go out for you as well.

My brother, Jim, stops by every morning after his growth factor injection at the BMT clinic. It will be interesting to hear from him in the morning about any pains from his bone marrow responding to the stimulus. It is great to visit with him, one on one, after years of just seeing him at special occasions, mostly with other relatives. He used to ride me around in his bicycle basket when I was young, but left home for college when I was 8. I lived with his family for a year while I was going to college. His strong faith and devotionals help to uphold me through these trying times. See the CaringBridge website in the sidebar.

Seems like everyday, I get a sign from God that he is still watching over me. For example, just I was typing this and listening to KTIS radio, a Newsboys' song, named "Something beautiful", started playing. The first words of the song are "I want to start it over, I want to start again. I want a new beginning, one without an end. ... It's the voice that whispers my name. ... Something beautiful." We saw them in person at the Target Center last Fall. As I checked my iTunes music list for my Newsboys album another song was at the top of the list, "Everthing is going to be alright".

Yesterday, I was visited by a total stranger who appeared something like angel in my room. She was distributing a care bag from the Care Partners and Club Butterfly of the Children's Cancer Research Fund. Inside the bag where many little snacks, reading materials and even a pre-paid calling card that I used last night to call my younger brother, Bob.

But the one thing that caught my eye was a butterfly pin on a card with the saying "From the cocoon of treatment and isolation, a child emerges - beautiful and ready to take flight. The butterfly is significant to me since back in 2001 as I reported on my Story2tell web site. Again when in the hospital in 2004 during the first days of my current ordeal, my friends at work sent me flowers with a butterfly as part of the arrangement. I will come out of this situation as the butterfly does out of a cocoon, either renewed for further life and purpose here on earth or in a totally new heavenly body.

Now, "Just the facts, Ma'am" as Joe Friday said. My Hgb was 9.3, expected up since I got rbcs yesterday. Platelets up some to 155 up some probably due to the Anagrelide wearing off. I did not see a reading on white cells, but expect that to drop as the treatment continues. They will give me more rbcs and platelets to keep me alive while giving antibiotics to prep for any infections that the wbcs would have taken care of.

Sometime in the next two weeks you may see what I look like bald.

Status Day -5

2007-05-03T17:17:00.000-05:00

Today is going fine after a night of light sleep. I received an ATG IV starting at midnight accompanied by more Lasix. I was urinating every 30 minutes. Then they took my daily blood tests at 4 am so that the doctors have results in the early morning.

My Hgb was 8.0 today so I am getting a blood transfusion. Still just red blood cells, but they will have to transfuse platelets later. Platelets have dropped to 133 from 272 when I checked in. Platelets have an average lifetime of 10 days and the chemo is wiping out their source as well.

Not enough blood had been drawn for a correct type & cross, so they had to take 4 more vials of blood. The blood bank would have caught the need to check for the other antibodies that I have, but I asked my nurse to check before it would be delayed even more.

This is day -5, only 5 days to go before the BMT. My brother is in town and starts his treatments to build bone stem cells tomorrow. He came to visit this morning as did the assistant pastor from our church. I appreciate everyone's support.

See the new picture of my central line with clear bandage while referring to a previous description of the procedure.

Chemo going OK

2007-05-02T20:43:00.000-05:00

My chemotherapy is going a lot better than I thought it would. After all of the chemo I mentioned earlier, I have not had any nausea. My biggest problme has been the constant need to urinate due to all the fluids, IVs and Lasix. Then with the ATG (horse serum), they had to monitor me almost continuously the first couple of hours. When I had to rush to the bathroom, I was tangled up in all the blood pressure, finger cuff and temperature lines. I finally just got a couple of extra urinals to keep by the bed so I did not need to get disconnected and reconnected each time. I am still getting a slow dose of ATG, but the next one at 11 pm will be speeded up since I have tolerated that as well. Now just waiting for my hair to fall out.

My wife said the picture that I posted last time was pretty grim, so I have attached a better one. I really am in good spirits. This picture was from from last using the Mac PhotoBooth distortion capability.

Chemo Started

2007-05-02T10:26:00.000-05:00

I had a pretty good night of sleep interrupted occasionally by bathroom needs, vitals and then labs at 4 am. Then I was awaken by the sunrise since my room windows face the east. I showered, ate breakfast, had my central line dressing changed and donated my weekly cultures of stool, urine and mouth swab. They have been giving me fluids and measuring all my outputs. My hemoglobin is 8.4 which is low considering that it was 9 on Friday when I got a transfusion. By my history, it should be close to 10. Nothing to worry about since they monitor everything closely and I will get more blood whenever it is needed.

The nurse just started the first chemotherapy called Fludarabine which I will have for a hour a day for five days. The side effects are not too bad, though the nurse put on a special gown and wore rubber gloves to protect herself in case she spilled any while hanging the IV. In an hour, I start on the Cytoxan which is supposed to be the worst as far as nausea but that is a one time 2 hour dose. Then, I get Allopurinol for 6 days. I also get ATG (Anti-thymocyte globulin) and MP (Methylprednisolone) for 3 days.. The first three supposedly kill off most of my bone marrow while the last two suppress my immune system. All this is subject to review and change as the doctors monitor my reactions and condition. The regimen is called a mini-BMT, not a full BMT. They do not eliminate all of my bone marrow, but weaken it so that my brother's donor cells can take over.

BTW, I have better wireless access (5 - 7 mbps so far) to the internet here than I have through my wired access through ComCast at home. Time will tell how the speed holds up.

Central Line

2007-05-01T20:20:00.000-05:00

I have checked into the hospital after getting my central line put in. It took a couple hours of paper work and vital signs before they started the procedure and then about a hour to complete. I was settled in my room by about 4 pm.

Priot to starting the procedure, they shaved my chest, but did not do a wax. It may be hard to see in the photo (that is reversed left for right by the camera on my laptop), but there is an incision up my my neck above the jugular vein on the right side. This area was numbed up with lidocaine, a needle was inserted and then a wire that went down towards my heart to measure the distance. A "straw" was inserted over the wire to hold the jugular vein open. Then about 4 inches lower, an incision was made and a tunnel made through the fatty tissue up to the other incision. A rod was pushed through attached to the catheter which was then pulled through. The catheter was inserted through the straw into the vein and the straw was split and peeled back like a banana. The catheter was pushed further in towards the heart and the upper incision was glued shut.

That is the place that is hurting this evening since whenever I move my head it tends to stretch the skin in the area. A stitch was placed around a little cuff on the catheter just where it exits my chest. There are two lumens that can be used for blood draws and IVs. The catheter has a divider inside for its full length. The red one is used for blood draws like the 14 vials of blood they took out when I got to my room.

My wife was with me all afternoon except for the placement of the catheter. My son rode his bicycle down to the hospital and back later, a round trip distance of 20 miles. We took a tour of the BMT ward and then walked about three blocks outside to Sally's for a cheeseburger. I have been back in my room for a couple of hours. I am feeling pretty good so far, but the chemotherapy starts in the morning.

Thanks for all of your comments and prayers. I really appreciate everything you are doing. By the way, do not send any flowers which are not permitted in the BMT ward. If you wish to call, my phone # is 612-273-0205. Cellphones cannot be used on the ward. If you wish to visit, I am in the BMT ward 4B, room 221. It is probably best to wait a few weeks though since I will probably be pretty miserable over the next week and susceptible to infections after that. Surprisingly, they do permit up to 3 visitors at a time, but make you wash your hands and wear a mask if you have any sniffle.

It's a Go for BMT

2007-04-30T13:06:00.000-05:00

I just got word from the BMT Clinic that the BMT is moving forward. Both my brother (the donor) and I have been given a clean bills of health. I check into Fairview University Hospital at noon on Tuesday and have a central line placed at 1:30 pm. Chemotherapy to wipe out my old bone marrow starts on Wednesday. I have radiation on Monday and then receive the BMT on Tuesday, next week.

I went to work this morning for a few hours. Cleaned off my desk and filed a few more things. Then came home home and mailed my last Health Care Reimbursement Request for the year. There is plenty of things I need to do around home, but I think I will take a nap for a few hours.

Transfusion #42

2007-04-27T22:10:00.000-05:00

The last thing I did at the BMT Clinic yesterday was to get a blood test with type and cross for a blood transfusion today. Since I was now at a different clinic, I had to convince the lab technicians that they should take more vials of blood for the blood bank to match the extra antibodies that I have in my blood. I worked about 3 hours this morning and called the clinic to confirm that they had the blood for me. Again, I had to insist that they check with the blood bank to assure that they actually had the blood. So when I got to the clinic at 12:30 pm, I knew the blood was waiting.

But the nurse told me that they could not give me blood because my hemoglobin was at 9.1 yesterday and not below the 9.0 level the doctor had ordered. Again, I insisted that they check with the doctor since my hemoglobin was probably already below 9.0. I even pulled up my history of hemoglobin change on my laptop, showing that my hgb dropped at least one point per week and would be too low by the time I entered the hospital and they got me blood next week. I didn't need to talk to anyone else before they took me to a new area for the transfusion.

The first nurse tried two times to get the IV inserted and then passed responsibility over to another who did it on the first try. The BMT Clinic seems to transfuse blood at a faster rate so I was finished by 4pm just in time to stop by the pharmacy to pick up some Lovenox. This was my 42nd transfusion and 85th unit of rbcs.

In preparation for insertion of the central line on Tuesday, I need to be off of my Coumadin blood thinner. I am now back to giving myself injections of Lovenox twice a day. Coumadin takes about 5 days to clear my system while Lovenox takes less than a day. I can stop the Lovenox injections one day and have the surgery to insert the central line the next.

It has been a long week with at least 15 appointments. I have also been into work three times though worked less than 8 hours total. I still need to make it in one last time to clean up some of my files. I am looking forward to my last weekend before going in for the BMT