Day 155

This last week was really pretty good for me. I had no further evidence of any GvHD and have not gotten at all sick. I saw my regular doctor (Dr. T) on Thursday after not having seen him for 3 weeks. He said I’m doing extremely well and my blood counts were good. My WBC held up at 3.7 which is down a little from last week’s 3.9 and still a little below normal, but I had also been without Neupogen for 2 weeks. Also, my hemoglobin was up a bit.

WBC – 3.7, down from 3.9 last week and still a bit below normal of about 4
Hgb – 10.0, up from 9.4 last week and still below the normal of about 14
Plt – 195, down from 216 last week and while below normal, still it is at a good level

Dr. T did have an explanation for my anemia (low hemoglobin), which the doctor I saw last week did not have. The explanation was that the kidneys produce something like the drug Procrit which encourages the production of hemoglobin. My kidneys have been struggling a bit all along, and when the kidneys are stressed like that, they don’t do as well at producing the Procrit-like chemical. I was glad to get an explanation that made sense. When I am off the drugs that cause my kidneys distress, my hemoglobin should be fine.

Dr. T also decided to cut back my anti-rejection drug (Prograf) again from 2 pills a day to 1. So after being cut by 1/3 a few weeks ago, it has now been cut again by 1/2. It seems like a significant cutback, but the earlier cutback having few negative consequences can give one cause for hope that this cutback will not be bad either. And maybe the next cutback to no Prograf will also be OK and I will be that much closer to a more normal life. In the last 2 days since the last cutback, I have again only noticed slight symptoms (like tingling hands) which may not even be related.

My next clinic appointment is scheduled for 2 weeks (Feb. 3). I intend to ask the doctor whether cutting back on the Prograf makes me less immune compromised and whether cutting it out altogether will mean I will no longer be immune compromised. I may also ask him about his guess on the percentage chance of cure now. He said before the transplant that he figured I had a 50 – 60 percent chance of being cured. It must be higher than that now, but I wonder how much higher.

Today, we’ve gotten ten inches of snow (so far) and I did some shoveling but I don’t last very long before I get winded and cold. It is still good exercise and I’m not in a huge rush to get it moved. We’re supposed to get high winds tonight and tomorrow, so it may not pay to shovel until the snow has stopped blowing around anyway.

Love,
Justin

Day 147

Things have been pretty uneventful (health wise) over the last 2 weeks. This was a period where some reaction to the anti-rejection drug (Prograf) being cut back would not have been at all surprising, and in fact, maybe could be expected. I did notice some small things that might have been due to the weaning, such as a tingling sensation in my hands on a couple of days and some intestinal cramping, although I’ve been getting the cramping periodically for quite some time now. Interestingly, the tingling hands seemed to be followed by periods of being able to accurately gauge the temperature of water with my hands. Ever since my transplant, I’ve been unable to tell with my hands whether water was just warm or really hot until the last couple of weeks. Maybe the tingling was the return of some functionality to the nerves in my hands.

At my clinic appointment yesterday, they said my blood counts were good except that my hemoglobin went down again to 9.5.

WBC – 3.9 (same as last week and close enough to the normal of 4.0 to be good)
Plt – 216 (down from 230 last week but at a good level)
Hgb – 9.5 (down from 10.0 last week and 10.5 the week before)

The hemoglobin should be up around 14 or 15 and below 10 is considered anemic and I would get a transfusion if it gets below about 8. While I thought the anemia was from medications, the doctor and physician’s assistance said they really have no good explanation for it. They said if the donor is not a full match or is not an ABO match, they often see some anemia, but not usually with a full antigen match and ABO match like I had with my sister. They said they would give me some Procrit to boost the production of red blood cells, but I said that if I am given a choice, I would decline medication. I am definitely getting winded more easily these days, but it is not really disrupting my life.

They told me to try skipping the Neupogen (which boosts white blood cell production) this week to see if my WBC holds up. I asked them when they would normally cut back on the Prograf again and the doctor (not my regular doctor who is in India for a couple of weeks) said they could try cutting it back this week. When I said that I wasn’t actually requesting that, but just wondered what a normal routine would be, he decided that we should keep it where it is and let my regular doctor decide next week because he has more experience anyway. Because of that and because they want to keep an eye on my hemoglobin, I’m going back for another clinic visit next week instead of skipping a week as they were hoping I could.

I’m working a bit more these days with 2 or 3 days a week in the office and working from home on other days. I still have to avoid crowds, refrain from hugging people and shaking hands, avoid raw fruits and vegetables, etc. I wash my hands frequently with antiseptic soaps and so far have been successful in not getting seriously ill. The restrictions can feel hard sometimes, but it’s a lot better than contracting some serious infection. And although I still don’t know how long this will go on, I’m hanging in and expecting to beat this disease.

Love,
Justin