Wednesday, December 31, 2008

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

Tuesday, December 23, 2008

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.

Monday, December 22, 2008

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!

Wednesday, December 10, 2008

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."

Wednesday, November 12, 2008

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.

Tuesday, September 02, 2008

Steady as it goes

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!

Thursday, July 24, 2008

Taper Continues

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.

Friday, June 20, 2008

Knee Surgery

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.

Friday, May 16, 2008

One year milestone

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.

Tuesday, April 22, 2008


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.

Thursday, April 10, 2008

Second Phlebotomy

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

Thursday, March 27, 2008

First Phlebotomy

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.

Sunday, March 23, 2008

Horton Hears a Who

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!

Wednesday, March 19, 2008

Atom Subscribe Added

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

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.

Monday, March 10, 2008


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.

Saturday, March 08, 2008

Aches & Pains

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.

Tuesday, February 26, 2008

INR & Peer Gynt

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.

Monday, February 18, 2008

No more Lovenox

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.

Tuesday, February 12, 2008

Coumadin Again

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.

Wednesday, January 30, 2008


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.

Tuesday, January 15, 2008

Eight months Plus

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.