Day 211

I’m over 211 days post transplant (tomorrow is 7 months), I’m doing well, and I still have a ways to go before I can feel like things are returning to normal. At my clinic appointment on Thursday, not much had changed and the doctor decided to keep my meds the same.

WBC – 3.1, up from 2.9 (with a shot of Neupogen last week) and still below normal of 4 - 11
Hgb – 10.8, down from 11.0 and still below normal of 14 – 18
Plt – 252, up from 202 and in the normal range
AST-SGOT – 33, down from 41 with 10 - 42 being normal
ALT-SGPT – 43, down from 52 with 10 - 40 being normal

My WBC and Hgb may still be depressed because of meds. One of the liver enzymes is in the normal range, and if the other drops a few more points, it will also be in the normal range and I may be able to start cutting back on my anti-rejection drugs.

I feel basically pretty good, although there are definitely some signs of GvHD and some other effects from either meds or just the trauma that my body has had to try to cope with. My intestinal cramping has gotten a bit worse, although it comes and goes. That could be due either to GvHD or meds and after describing it to the doctor, he decided it is probably GvHD. And while my energy is way better than it was shortly after the transplant, I still get winded easily and don’t have nearly the stamina I did before (and would like to have again).

The doctor seems pleased with my current condition. I think he is glad that I have some GvHD, and that it is not severe – at least not yet. I remember that I learned that GvHD is divided into acute and chronic categories with that showing up in the first 100 days being acute, and that showing up after 100 days being chronic. That means I had very little acute GvHD, but do have some chronic. I wonder how arbitrary that 100 days is, and wonder if 100 days was chosen when fully ablative transplants were the norm. I get the sense that with the mini-transplants like I had, the GvHD tends to show up quite a bit later than it did when the transplants were fully ablative. I’m also reminded that the chronic GvHD can show up almost any time, even years after the transplant; meaning that even when I start to feel normal again and get off my meds, I still may have to deal with it down the road. I’ve talked to other people that have noticed effects years later, but of course they wonder if the problems are transplant related or just symptoms of getting older. It is often impossible to know.

Still, I’m grateful to still be around and feel relatively healthy. I’m planning to continue to improve and get more active. As I’ve said many times before, I am also grateful to family and friends (especially my wife) who have been so supportive and understanding throughout. Of course, I also continue to be grateful to my sister, who shared her stem cells with me. They seem to be doing their job quite nicely.

Love,
Justin

Day 195

Another regular biweekly clinic appointment happened today and all seems to be going very well. Although I didn’t expect the results of the bone marrow biopsy/aspiration until next week, they had the results and for the third time (out of three) since the transplant, the chimerism studies (including DNA) show 100% donated bone marrow. The doctor seemed more pleased with the results this time than he was the other 2 times. I figure it’s either because he often sees the results after 6 months show other than 100% donated marrow even after earlier results showing 100%, or else he was just in a better mood today than earlier. My blood counts were OK.

WBC – 2.9, down from 3.3 last week and definitely sub-normal
Hgb – 11.0, down from 11.1 and a little below normal of 14 – 18
Plt – 202, down from 220 and in the normal range still
AST-SGOT – 41, down from 49 with 42 being normal
ALT-SGPT – 52, down from 76 with 40 being normal

The last 2 are liver enzymes and lower is better. They are both way down from 4 weeks ago when they were 65 and 115 respectively. Because they are down so far, I asked the doctor if he was considering cutting back on the Cellcept which he added because of the liver distress. He said he was going to leave it at the current level (4 pills a day) until the enzymes are down to normal levels, and then he would try cutting by one pill every 2 weeks. All the other meds are also staying at their current levels.

Dr. T said I was doing very well, as enthusiastically as I can remember him saying so. I said to him that I was guessing we were just waiting for my new immune system to become accustomed to its new host and he agreed. He said he hoped to start getting me off my meds in 2 or 3 months. In one sense, it seems like a bit of a long time because it comes after 6+ months of post-transplant recovery already. But mostly, I feel like if it happens that soon, I’ll be ecstatic. Two or three months can pass rather quickly these days.

Interestingly, I got a really runny nose on Sunday, but by Tuesday, it was pretty much gone and hadn’t turned into a sore throat or coughing or sinus congestion or anything. I’m not sure whether to credit the part of my immune system that is functioning or the myriad medications I’m on or both, but I’m grateful that I’m still not getting sick. I’m also still trying to be cautious about crowds and germs, and feel like I need to guard against getting lackadaisical due to feeling so good and not getting sick.

Your friend, getting better,
Justin