continuing concerns

The most recent meeting with my pulmonologist was spent primarily on the results of my former tests and the discovery of my wonky left diaphragm. As I thought, there is little to do about this. It appears to be responsible for respiratory function in the 40% range of average capacity. I am getting about 75% diffusion--transfer of O2 from lungs, so that is relatively good news. Drachler is worried about my oxygenation levels upon my return to higher elevation in a couple weeks (!) (He would rather I lived in San Diego.) Right now my O2 levels are routinely in the mid 90%s which given my lung function is very good. He says that I need to get an oximeter and measure and don't get below 89% on a routine basis. Such an acquisition is on the schedule.

It was only when he began to listen to my lungs on this last appointment that he said, you're wheezy. (Yes, and grumpy.) And we finally separated from the mechanical above to my more or less chronic upper respiratory illnesses. This discovery led to a cortisone shot, a Z-pack of 5 azithromyecin tabs and (later) a short course of prednisone tabs. The cortisone shot produced improvement, ergo the prednisone tabs (Aside: the prednisone brings back ugly memories of chemo, of which it was a part. A steroid, it messes with my sleep and makes me speed.) Today is my last prednisone day--1 tab--so we'll see what condition the condition is in thereafter. I am made less wheezy by all of this, that is the good news. The bad news is the implicit chronicity in all of this. And, as yet, I am not wheeze free.

Let me summarize--from an admittedly deteriorating memory.

1. In the mists of past years, every fall I would get an upper respiratory illness. It used to take the form of lasting anywhere from 2 weeks to a month of coughing, expurgating, etc. Often it was thought to be allergenically started. There would then be a hiatus of several weeks and a recurrence of much shorter duration, e.g., one week. These bouts were often treatable OTC, but also with antibiotics. They were not totally debilitating, but then I was a lot younger.

2. Enter the big C in 2011; and the R-CHOP + V chemo and its subsequent side effects thru 2013. (Aside: Drachler thinks that none of the poisons above have been associated in the literature with subsequent lung damage. He knows some that are!)

3. We travel on a wonderful Mississippi River cruise in June 2014. It is demanding in terms of activity level. Walking daily in high heat and humidity. Upon return I am diagnosed with pneumonia. It is successfully treated with an antibiotic.

4. All is quiet until approximately Oct 2015 when I again contract pneumonia. This appears--on retrospect--post the Celebrate America marathon week of several hours playing each night and being up til midnight. In other words, much exertion. Still I am feeling okay. Sometime in this period I begin contemplating a return to my pre-cancer fitness levels by beginning a supervised fitness program of aerobic (exercycle) and weight training. This makes me feel even better. Within a few weeks, I get the pneumonia. It is successfully treated by antibiotic.

5. I return to my exercise program and we leave for our annual winter in AZ. By mid Dec I am back in care and another bout of pneumonia is diagnosed. It is successfully treated by antibiotic.

6. With all of this sickness, I stop practicing my trumpet. A few weeks ago I am feeling good and pick the horn up and begin a 30-60 min per day regimen. Within a few days (?) weeks (?) I am wheezy again and feel myself slipping back into what might eventually become (but hasn't!) some more pneumonia. That brings us to the present.

I am starting to feel good enough again, that I want to resume practicing, and getting out on the street and walking--all of which every doc I have ever been to, says would be good for me. But wait: each time I have tried to do this in the recent past, I end up sick again. I'll probably run this personal experiment again anyway. Otherwise, do I just give up and become a fucking invalid? (Wait a minute: become?)

new data

Well, today I have completed a chest x-ray with fluoroscopy plus some more respiratory studies. And there is some data to report. My left diaphragm is not doing its job. The fluoroscopy shows that it is being dragged up some--incompletely--by the right one which is fully functional. This validates restrictive lung disease as the nominal cause of my breathing problems. The doc who examined the pix suggested any number of causes: injury, neurological and yada yada. Since D Drachler hasn't seen this yet I don't have any idea what can be done. I suspect very little.

We also repeated the respirometry I had done in Logan with a couple more tests added on. The good news here was the reliability of the IHC results. In general terms I am at low to mid 40%s in terms of capacity. And I get a 10-12% boost from an albuterol inhaler should I need it. These figures almost identically concur with those I produced in Logan in November.  Therefore, there is no deterioration in function from then until now. Hey, hey!

The additional tests had to do with the efficiency of O2 transfer from air to lungs and I don't yet have those results.

Now awaiting a pow wow with DD to see what, if anything, is next.