Back to normal

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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.