Today marks the first birthday of my stem cell transplant. I thought that it would be an appropriate time for a long overdue updating of my blog. For those of you who have been checking, I appreciate your interest, concern and patience.
The past five months have been a series of ups and downs. While trying to get myself in some semblance of shape and resume my “new normal” life, I have encountered a few setbacks. On December 9, I had pain in my lower left back and was experiencing extreme shortness of breath (more than the shortness that I’d had since the transplant). I called my doctor (Mehta) and he instructed me to go immediately to the Northwestern Memorial Hospital Emergency Room. X-rays showed that I had a pulmonary-embolism (PE) (blood clot) in my left lung. I was in the hospital for five days while they treated me and tried to determine where the clot originated (suspected from a PICC line that I had in my arm for four months) and scanned my entire body looking for more developing clots (none were found). The treatment consists of two shots a day in my stomach of Lovenox (anti-clotting blood thinner). Over several months the existing clot should dissolve and future clots should be prevented. This will likely continue for at least six months. I find it ironic that a year ago (before transplant) I had virtually no platelets (the blood cells that facilitate clotting), now they’re concerned with excessive clotting.
After my pulmonary-embolism I gradually resumed my exercise routine and was getting myself back into the shape I was in before the pulmonary-embolism. In early February my doctor ordered an x-ray to determine if the pulmonary-embolism was shrinking as expected. It was. The x-ray, however, also revealed that a small spot that I had had on my lung for well over a year had increased in size during the past six weeks. A needle-biopsy was ordered for the following week. The good news is that, after several agonizing days of waiting, the results came back a negative — the spot was not cancerous. Unfortunately, the biopsy process caused a nemothorax in my lung. To fix this they inserted a tube in my chest to allow the air pocket to escape and sent me home for a few days. Upon returning, x-rays showed that nothing had changed. They then inserted another tube. When I returned, again x-rays showed no improvement. Finally they decided to check me into the hospital and put me on a ventilator overnight. That did the trick — nemothorax gone! I experienced no pain (only frustration) through this whole ordeal. Thankfully, I didn’t realize that it could have been fatal until I researched for this blog — ignorance is bliss.
On March 3, Cookie and I visited our daughter Mary in San Diego for the weekend, met her 5th grade students and saw her new apartment. We had a wonderful time but I found myself easily becoming short of breath and requiring frequent rests. I had a standard appointment with Dr. Mehta on Tuesday, March 6 and reported my symptoms to him. Since Cookie had recently had the flu, he though I might have caught it. He tweaked my meds and told me to keep him informed over the next several days. My condition had only gotten worse and he had me check into NMH on Monday, March 12, for extensive testing. I was prodded, poked, stuck, x-rayed, CT-scanned, biopsied, swabbed, etc. by virtually every department in the hospital including the transplant team, oncology, pulmonary, cardio, infectious diseases, ophthalmology, dermatology and radiology. As one nurse put it, “I think that you’ve been checked out by every department except OB/GYN.” After five days it was concluded that I have a lung condition know as Bronchiolitis Obliterans (BO). This means that some delicate fibrous tissues in my lungs have been damaged, hardened and no longer function in the oxygen/CO2 exchange process. Tests show that I am taking in enough oxygen but I am not able to expel all of the CO2 that I should. The doctors suspect that the cause of the BO is graft-versus-host-disease (GVHD) resulting from my stem cell transplant. Previously I had only experienced GVHD of the gut (diarrhea). Now I have it in the form of dry, flakey skin, dry mouth, dry and irritated eyes and apparently I have GVHD in my lungs. The doctors kicked up some of my meds and added some new ones. (I think that I’m now taking over 35 pills per day. Thank God for Cookie who, among so many other things, keeps track of all of pills and shots.) They discharged me last Friday with a few tanks of oxygen to take home in case I needed it — I haven’t. Bottom line, this thing has to run its course and hopefully the drugs will prevent any further damage. This is merely another little challenge in a wonderful life and I’m very confident that I have a long and fruitful life still ahead of me.
On the occasion of my 1st re-birthday I’d like to thank all of my family, friends, caregivers, employees and aquantiances who have provide so much in the form of prayers, support, encouragement, care, friendship and laughs.
With love & gratitude – George ☺
