I swiped this from Jim’s blog jimgilliam.com. He does a much better job of explaining his illness than I ever could.
When the cure becomes the disease
August 2, 2005 02:01 AM
For the last couple of years I’ve had problems breathing. It’s been overshadowed by other health problems, and has even appeared to go away for a time, but in the last six months — after I dealt with all the other problems — I was left with a dry cough and a steadily deteriorating ability to breathe. To the point I’m at today where I get severely short of breath just taking a shower, or walking up one flight of steps.
After much pressure from those close to me, I went to a pulmonary specialist a week ago. He immediately honed in on the problem, identifying that my lungs are restricted.. ie, it’s not asthma. I had a CT scan and X-ray last week, tracked down an old CT scan from 6-7 years ago to compare it to, and today I came back for my results.
There’s a substantial amount of scarring in the upper part of both my lungs which is restricting my lung capacity to about 25% of what it should be. The question is what is causing this, and to quote my doctor “whether we can reverse the process.”
I haven’t talked much about my two bouts of cancer here… Here’s the super-short condensed version. In 1996, I was diagnosed with t-cell lymphoblastic lymphoma, which is a rare form of non-Hodgkin’s lymphoma. Basically I had crab-grass growing around my lungs giving off fluid which, by the time I was eventually hospitalized, had grown to several liters around my heart and lungs. 9 months of chemotherapy later, I was clean. 6 months after that I was diagnosed with acute lymphoblastic leukemia (better known as ALL). The same cancer, only it was now in my blood stream instead of my lymphatic system, which changed its name to leukemia. Massive amounts of chemotherapy and radiation led to a bone marrow transplant from an unrelated donor found through the national marrow donor program. The transplant was a huge success, and I was back at work within 6 weeks.
Restrictive lung disease can happen for a variety of reasons, but due to my history, it’s probably one of the three things that saved my life: 1. the chemo, 2. the radiation, or 3. the bone marrow transplant. The doctor needs to do a biopsy (get a piece) of the scar tissue and run some tests on it. First, he is going to present my case to the pulmonary board at Cedars Sinai to get their feedback.. we will meet in a week and figure out how best to do the biopsy. In the meantime, I’m tracking down as much of my old medical record as I can.
I don’t know much right now, except that this is scarring.. meaning it’s permanent and not something that just goes away. I will never have normal lungs or be able to run a mile or anything. The question is whether the scarring can be stopped, and the scar tissue that is already there can be reduced at all. That depends a lot on what is found in the biopsy. I think the best case scenario is if this is due to an inflammation — something that can be treated pretty easily.
