Month 20

Yesterday (3/27), I had a clinic visit and went and had another CT scan done. The good news is that my pulse-ox reading at the clinic was back up to 91 or 92. It may be at least in part due to the puffers I’m on (Advair and Qvar), but it’s good news regardless of the reason. My doctor said she had talked to the pulmonary specialist a couple of times. She said she can’t see the hypoxia (manifested as the cyanotic look with blue lips, etc.), but because the pulmonary guy is concerned about GvHD, she isn’t going to adjust my meds, even though after cutting my Cellcept in half, my usual GvHD symptoms of sore muscles and fluid retention haven’t flared up much. I didn’t get my blood counts, but apparently everything looks good from the point of view of my BMT doc. Since they’re not changing anything, she says she doesn’t need to see me until May.

One thing I didn’t mention in my last blog entry is that one upside to my recent health problems is that I lost more weight. I really can’t take any credit because it was mostly due to a complete loss of appetite for most of a week. Anyway, although I put a few pounds back on in the last week, I’m now almost 60 pounds less than I was just before the transplant, about 20 pounds under the weight at which I stabilized shortly after the transplant, and 45 pounds less than I was when the edema was the worst around last November.

I feel quite good right now. I haven’t tested lately whether I still get winded so easily, but I feel like it’s not as bad. Mostly, I feel good because my cold is essentially gone and compared to how discouraged I felt when I was sick, I now am able to feel encouraged about the prospect of continued recovery. I scheduled my PFT (Pulmonary Function Test) and ABG (Arterial Blood Gas) for next Tuesday, and then I’m scheduled for a clinic visit on 5/1 and the pulmonary specialist on 5/10. Of course, when the pulmonary guy gets the results of my CT scan and PFT/ABG test, he will contact me if he sees any major concerns.

Month 18

I feel a bit contrite. Tomorrow will be 2 months since I last updated my blog. That’s too long. And it not like nothing’s been happening. I don’t know how many people still read this, but I know there are some; and I want to keep it updated even if no one is reading it. I will try to reconstruct what has happened between 1/20 and now, although my sense of when things happened may not be accurate.


At my 1/30/06 appointment, my counts were as follows:

...... last time current normal
..... ---------- ------- ---------
WBC.. 6.6 ...... 7.2 ..... 4 – 11
Hgb.. 11.6 ..... 12.2 ... 14 – 18
Plt.. 247 ...... 269 ... 150 – 400

I know that my pulse-ox readings continued to drop. They had trouble getting readings above 85 starting about my January 30 appointment. There were questions about whether the machines were giving bad readings because some would read about 84, but they would try another that would show about 88. About this time, I also developed a cold with lots of coughing and sinus congestion, and this may have complicated the pulse-ox readings. There was also conjecture that possibly there was some GvHD involving the skin that may make it more difficult to get good readings. As many of you know, the pulse-ox readings involve a small clip that goes on a finger and shines a red light into the finger to measure the oxygen concentration. While it is usually a good indicator, it is a crude measure. Sometime around here, it was decided to send me to a pulmonary specialist to try to determine if there was something wrong with my lungs that hadn’t shown up in the CT scans from December. However, it was hard to get those appointments, so it was set up for March 15. I believe it was also around this time that we reduced my Prednisone to 15 mg/day.

My next clinic appointment was on February 20. My recollection is that there wasn’t much different from the previous appointment. I was still coughing, still had a runny nose, still had low pulse-ox readings, but still felt relatively good aside from the coughing. Since my GvHD still seemed relatively tame (little muscle soreness and my weight actually dropped some), I think we reduced the Prednisone again, down to 12 ½ mg/day.

On March 3, I felt I was still doing pretty well with the GvHD, so I called the clinic and the PA agreed that I could reduce the Prednisone to 10 mg/day. However, my cold was getting worse and I had been feeling increasingly bad the previous day or two. In fact, the night before, I had played volleyball even though I wasn’t feeling great. That was a big mistake. I left early because I felt so bad, and couldn’t even successfully back my car into the garage. First, I hit the curb backing into the driveway, and had to make a second attempt. Then, I broke a mirror backing into the garage. Usually, I feel like a master at driving in reverse, but not that night. It turns out I had a fever of about 101, and I think I stayed home from work on Friday because I felt so bad.

On March 4 (Saturday of course), I woke up with my right ear completely plugged up so I was deaf on that side and I could actually feel some pressure and even slight pain. The combination of the fever and ear problems concerned me, but
I didn’t want to call the BMT unit at Jeanes Hospital (which is the procedure when the clinic isn’t open) because I was afraid they might want to admit me – or at least ask me to come to the emergency room. So I called my primary care physician and went there that morning. The doctor confirmed that I had an ear infection and heard some wheezing in my lungs (which had never been present at my clinic appointments), so she put me on another strong antibiotic (azythromycin) for 6 days. I take penicillin every day, so obviously, the infection I contracted was penicillin resistant.

I was really wiped out the whole next week. I had the energy to do essentially nothing, got winded trying to do anything, remained deaf in my right ear for more than a week, coughed more than ever, had no appetite, etc. I was so wiped out and it seemed to last so long that I really got quite discouraged. I remember expressing frustration at being such a basket case and it was so extreme that it nearly brought me to tears several times. I kept reminding myself that it was just a bad cold and that my GvHD seemed to be heading in a good direction.

March 13 was my next clinic appointment and my blood counts were as follows:

...... last time current normal
..... ---------- ------- ---------
WBC.. 7.2 ...... 4.3 ..... 4 – 11
Hgb.. 12.2 ..... 11.8 ... 14 – 18
Plt.. 269 ...... 230 ... 150 – 400

They were down a little, but not enough to raise concerns. We dropped the Prednisone to 7 ½ mg/day and cut the other immune suppressant (Cellcept) in half. They said after a week, if I was feeling OK, we could drop the Prednisone to 5 mg/day. In response to my concerns that I was still deaf in my right ear a week and a half after it started, they said that it can take a long time for that to clear up.

On March 15, I went to see the pulmonary specialist and he added a new twist to everything. I liked him. He instilled confidence that he would figure out the problem, while having the humility to say he didn’t know currently what was going on. I was sent to this particular specialist because he has been working with the BMT unit for years, and so has familiarity with problems that follow bone marrow transplants. He explained what he did see and know and spelled out how he planned to proceed. The gist of what he said is that he believes the low pulse-ox readings, in part because I looked cyanotic (my lips looked blue to him). Basically, the three things they measure when they do pulmonary tests are lung capacity, the ability to move air, and transfer of gases to the blood. He said between November when I had my last PFT (Pulmonary Function Test) which had me in the normal ranges and now, there has been a significant reduction in my airways and thus my ability to move air and oxygenate the blood. This reduction could be a result of the cold I’ve been experiencing lately, but he is concerned that it may involve some GvHD. He put me on a couple of puffers (Advair and another whose name I can’t remember), and plans to have me get another CT scan, another PFT followed by an ABG (Arterial Blood Gas). The ABG involves a blind stick because the arteries aren't easily accessible like veins are. He also said that patients with oxygen saturation levels below 89 (mine have been around 85) are often or usually put on oxygen. He said he may put me on oxygen at night or while I’m at home, but since I seem to do OK with low levels of activity, he won’t do it yet.

I started this posting on 3/19, and today is 3/21. Yesterday morning, I stopped at the office of the pulmonary specialist to deliver the CT film I had picked up from the hospital that had done it. The doctor was there on his day off, so he had no appointments scheduled, and when he saw me he asked me if I wanted to go look at the CT film with him, so I did. He said the images were pretty good (he was afraid they wouldn’t be) and showed no significant problems. He also said I still look cyanotic. He is going to arrange for me to get another set done so he can see any changes between December and now. I think he is doing the arranging because he anticipates that my insurance might resist me having another so soon after the last one.

I’m going to wrap this up and post it without a lot of editing because I don’t want to delay any longer, so please excuse errors, omissions, and lack of clarity. Maybe I’ll edit it some a couple of days after posting. I’m currently feeling a significant level of concern because GvHD can cause permanent damage to the lungs via scarring, while at the same time hoping that my problems are mostly cold related. In any case, I’m still determined to get back to a more normal life physically. This latest problem leads me to feel that while I’m not near the beginning of recovery, I may not be near the end either. I’m somewhere in the middle of a long process. Meanwhile, I keep thinking that at least I’m still here, and I plan to stick around for quite a while.

I’m scheduled for another clinic visit on 3/27 and another visit with the pulmonary specialist on 5/10, which seems a long way off, but I assume my tests and CT scans will be soon and he would contact me if he found anything significant. My aim is to keep this blog current, so I hope to post again next week.

Love to all,
Justin