It has been a few days since my last Dr appt on Tuesday. My hemoglobin has dropped from a high of 11.5 on August 21 to 10.2 on Tuesday. Dr is still concerned about hemolysis (breakdown of red blood cells) but sees less jaundice in my eyes. He has added folic acid back to my medicine list. I took folic acid for several years, but stopped when I entered the hospital in May. I have also transitioned off the GenGraf and MMF, reduced Prednisone and started back on Bactrium. I am not sure if it associated but my appetite has reduced and taste has changed.
I have applied for both LTD (long term disability) from Aetna and Social Security Disability. I heard back from both about questions and their initial positive impressions. My short term disability from my employer ends on October 18th and, if approved, Aetna LTD would start October 28th. The SSD will take several months and will only offset part of the Aetna LTD. I will discuss possibly working part-time with my Dr at my next appt on Oct 2. The next month will be a time of some major changes either in my daily activity and/or income level.
Saturday, September 22, 2007
Tuesday, September 11, 2007
Day 123 Changes
My health has still not settled down and changes are underway. I am still feeling pretty good though experienced some nausea, stomach cramps and diarrhea in the past week. I will probably be experiencing more as I back off some of the medications.
My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.
Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.
My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.
My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.
Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.
My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.
Monday, September 03, 2007
Day 115
These postings are getting further between since I have little to report on my health. Everything is pretty stable and it is two weeks between appointments now. My last was on Aug 28th so next is on Sept 11. My blood counts are good with hemoglobin staying above 11 (11.4 at last test). Dr is still concerned about seeing some hemolysis so it should be higher. They are also watching my urine since some blood and protein were noticed a few weeks ago. I have now reduced my prednisone to 90mg every other day from the every day when I started on it.
We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.
I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.
We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.
I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.
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