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.
This blog covers the history and status of my living with myeloproliferative disease (MPD) and antiphospholipid syndrome (APS) also known as Hughe's Syndrome. My MPD was an unclassified version and possibly combined with myelodysplastic syndrome (MDS) and autoimmune hemolytic anemia. I had a BMT in 2007 and later a bout with Hodgkins Lymphoma but am doing fine today in May 2016.
Friday, May 16, 2008
Tuesday, April 22, 2008
GET SMASHED
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.
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
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.
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!
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.
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.
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
Regression
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.
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.
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.
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.
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.
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
Phlebotomy?
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.
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.
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.
Friday, December 21, 2007
Merry Christmas
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
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
Tuesday, December 04, 2007
More diarrhea
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.
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.
Tuesday, November 20, 2007
Diapers
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.
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.
Tuesday, November 13, 2007
5000 Served
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.
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.
Wednesday, November 07, 2007
Biopsy #9
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.
Monday, November 05, 2007
Comment changes
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.
As always, your comments and support are appreciated.
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