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
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
2 Comments:
Justin, what is your age?
I'll be 53 in a few days.
I confess to some curiosity about who is asking and why. If you want to email me directly, my address is jkhyatt(at)bluehen(dot)udel(dot)edu.
Post a Comment
<< Home