Month 17, part A
Merry Christmas. Again this week, there’s not much to report. My blood counts are still bouncing around the range that have been.
...... last week current normal..... ---------- ------- ---------WBC.. 7.6 ...... 6.6 ..... 4 – 11Hgb.. 11.6 ..... 11.7 ... 14 – 18Plt.. 207 ...... 223 ... 150 – 400
The only change in my meds was that the Prednisone was reduced from 20 to 15 mg. per day. My pulse ox was back down to 91% from 93 last week, but the doctor actually seemed fairly unconcerned, thinking it would go back up on its own eventually.
My hands sometimes still cramp quite a bit when I do fine motor work with them. I got a chance to play tennis on Friday because it was relatively warm, and while I certainly didn’t play great tennis, it was a lot better than I feared it might be in terms of getting winded, etc. I am encouraged by how I was able to exert myself for an extended period.
I’m going back to the clinic again this Thursday, but the doctor hopes to be able to start stretching out the frequency of my visits soon because it seems that not much is changing and the modifications to my meds will be gradual.
Love,
Justin
Month 16, part D
I’m quite late with my report on last week’s clinic visit. I probably failed to get this out sooner in part because very little changed from the week before, so this will be short. Here are my blood counts:
...... last week current normal..... ---------- ------- ---------WBC.. 11.9 ..... 7.6 ..... 4 – 11Hgb.. 11.8 ..... 11.6 ... 14 – 18Plt.. 265 ...... 207 ... 150 – 400
All my meds stayed the same and there was nothing remarkable about my vitals, etc. My pulse ox was up to 93% from about 91 or 92 the last few weeks. This is still quite low, but the improvement is a bit encouraging. I didn’t realized how low a reading of 91% is until I did some reading. While there is concern about a reading of 91%, if it got below 90%, it could be a real problem.
My main complaints right now are that I have periods of fairly extreme cramping in my hands. It seems to happen most when I am holding something in my hands like a newspaper or playing cards (I’ve been playing a fair amount of bridge lately). There is also some cramping in my feet and legs. My potassium levels are fine, so I don’t know why there is the cramping. I am drinking tonic water because the quinine in it is supposed to help. I don’t know how much it does so.
Yesterday marked 16 months since the transplant, so I’ve started the 17th month. I am titling this month 16, however, because it is a late entry for last week. I’ll try to do better this week.
Love,
Justin
Month 16, part C
Believe it or not, I lost another 12 pound of fluid in the past week. That’s 24 pounds in 2 weeks and about 27 in 3 weeks. My counts were much like before with the WBC high due to Prednisone, and who knows why the hemoglobin is up as high as it’s been for a while. My blood pressure is also a bit elevated due to the Prednisone, and the doctor considered prescribing meds for that, but decided to wait and see how it does with reduced steroid levels....... last week current normal..... ---------- ------- --------- WBC.. 10.8 ..... 11.9 .... 4 – 11 Hgb.. 10.0 ..... 11.8 ... 14 – 18 Plt.. 343 ...... 265 ... 150 – 400The CT scan from last week showed nothing remarkable, so there is still nothing to explain my low pulse oximetry. After shoveling snow today, I can tell that I don’t get winded nearly as easily as a week or two ago, although I’m not back to normal yet.
After thinking about things, I developed a theory that if I am suffering from some chronic GvHD that is attacking connective tissue and caused the fluid retention, that it started back well before the immune suppressants were reduced. I remember wondering why I started gaining weight again when I was really not eating much and actually getting some exercise. I now suspect that I was starting to retain fluids then and that it just accelerated when the immune suppressants were scaled back and it had a chance to really ramp up. My weight now is about what it was when I left the hospital and before I started to gain weight. Of course, back then, I had no reason to suspect what was going on.
The other thing I started thinking about was that since my particular form of GvHD seems to be pretty rare, which I infer from the fact that the doctors were at a loss for such a long time, and there seems to be no positive test for connective tissue being attacked, weaning me off of the immune suppressants is going to be tricky. How will we know how quickly to wean and how will we know if the GvHD is gearing up again. I asked my medical staff about this and they said it really is kind of trial and error. We reduce the meds, and if the edema symptoms return, we bump them back up. It could really be 2 steps forward and 1 step back for quite a while. On the other hand, it is possible that the symptoms won’t return and we can take more of a straight line reduction of meds. I told the doctor that I would vote for the latter course. The doctor said her plan is to reduce the Prednisone to a low maintenance level of something like 5 mg/day (I’m down to 20 mg/day now from 40 last week), and then start to reduce the Cellcept again.
It’s amazing how much better I feel with the 27 excess pounds gone. I’m still left with considerable cramping, especially of the hands, some shortness of breath, and taste buds that are still really letting me down. However, they’re bearable and I’m still hoping they’re temporary.
Thanks for listening. Tune in again next week.Love, Justin
Month 16, part B
The Prednisone has continued to have a profound effect on my edema (fluid retention) problems. I have not only become less of a balloon, my muscles also don’t hurt all the time anymore. At the clinic yesterday, my medical team seemed amazed that I had lost 12 pounds (of fluids, of course) since my visit last week (I’ve probably lost more than 20 pounds in the last 2 or 3 weeks). They could also see that my limbs were much less swollen. My blood counts are still good (the WBC is elevated due to the Prednisone).
...... last week current normal..... ---------- ------- ---------WBC.. 8.2 ...... 10.8 .... 4 – 11Hgb.. 10.5 ..... 10.0 ... 14 – 18Plt.. 321 ...... 343 ... 150 – 400
As a corticosteroid, Prednisone is a very effective anti-inflammatory, and I believe this is the primary reason that I have seen such a rapid and profound effect on my swelling. However, Prednisone is also an effective (read powerful) immune suppressant that we hope is also fighting back the GvHD that is presumably attacking my skin and connective tissue, causing the edema in the first place. My doctor says it is proven to attack T-cells that are a central part of the immune system response to foreign entities (in this case, me). We’ll see how things go from here. The dosage of Prednisone has been scaled back from 60 to 40 mg/day. Relatively high dosages like this have to be reduced because of the ancillary damages it can cause the body, but apparently, it must be reduced gradually or other bad things happen.
I also had a CT scan of my chest yesterday to see if there is something there to cause my ongoing low pulse oximetry and shortness of breath. I probably won’t get the results of that until next week.
The bottom line is that I feel MUCH better than I have in probably 2 months due to the edema relief. Feeling better physically makes it much easier to have a more positive outlook as well. I do realize that since I have some chronic GvHD going on, I will likely be immune suppressed for some time, but I’m still hopeful about getting past all of this sometime (including getting my taste back).
Love,
Justin
