Thursday, November 10, 2005

Pseudo-GVH? (Non medical-types may want to skip this blog)

The last ten days have been...interesting. Beginning Monday before last (i.e. October 31st) I started having intermittent bouts of voluminous watery frequent bowel movements. This is one of the things I had been warned to look for as possible GVH (graft vs. host) disease . GVH is the "downside" of stem cell transplants from non identical-twin siblings. Even when a match is "perfect" (as it was in my case) there is this risk of Nancy's cells attacking my organs, particularly, gut, liver or skin. And since NIH started tapering my immunosuppressant (cyclosporine) October 20th there is a distinct risk of GVH at this time.
My doctors initially felt that the intermittent nature of my episodes made GVH less likely, but when it got worse on Friday (11/4) they requested a rectal biopsy. Having a fellow physician for a friend pays off in these situations. Mark Savarise insisted on coming in on his day-off and taking care of the biopsy right away in his office that afternoon!
On Sunday, it seemed I was doing a little better (wishful thinking?) so I drove down to Lewiston that afternoon for a previously planned Steelhead fishing trip Monday with Steve Pettit. It was not to be. The "runs" recurred with a vengeance at 2:30 AM that night. When we got to the River Monday morning I finally conceded that I was in no shape to be out in a drift boat for 6-7 hours on a cold, potentially rainy, November day - so I started the 3.5 hour drive back to Sandpoint. Once home, I contacted Dr. Bishop (the head of my transplant team). Hoping to avoid the use of steroids, he agreed to increasing the cyclosporine back to the pre-taper dosage. He also put me on "bowel rest" - 2 days of clear liquid diet, followed by "full" liquids, then bland soft, and a gradual return to "normal" food. By Wednesday I was doing better. The biopsy report was back. NO GVH!
This was great news, but then what the hec had caused all this? Right at the beginning extensive tests had excluded Giardia, Salmonella and other bacteria, viruses, etc. And although the biopsy was officially "negative", Dr. Bishop still wanted me to stay on the higher dose of cyclosporine until they see me at my scheduled appointment, back in Bethesda, next Thursday (the 17th).
Meanwhile, I'm very slowly getting back into "real" food again. The simplest things - like a bowl of Mary Catherine's homemade leek & potato soup - seem heavenly after four days of bland fluids! I have been able to workout the last few days. I cooked a nice seafood chowder - too rich for my diet (sigh)- for our "Wednesday Winos" group Sauvignon Blanc wine tasting at our house yesterday, and today I went flying with my instructor, and put the studded snow tires on the Honda.
This whole episode sets me back at least 4 weeks on getting off the cyclosporine - the last requirement for applying for my FAA medical certification, needed to resume flying as "pilot-in-command" (i.e. by myself), but I'll just have to be patient. This isn't my first delay, and, most likely, it won't be my last! In the Big Scheme of things I'm still doing fantastically. One has to expect some "bumps in the road".

Phil

5 Comments:

At 6:05 PM, Anonymous Anonymous said...

Hang in there, Phil!! You are one real Superman! We hope this is a minor setback on your road to recovery.
We so much enjoyed your brief visit with us in October. Just like old times when we spoke of important matters and solved the problems of the world over good food and cheap wine.
Love you much and are hoping for good news.
Brenda and Michael

 
At 1:34 PM, Anonymous Anonymous said...

Thank you Phil for putting this into your blog. When I saw you last week at the health club, I couldn't keep track of all the terms. Now I feel I understand.

I hope the voluminous tapers, firms, and becomes normal. Have a good trip back on Thursday. Maybe I'll see you tomorrow at El Club.

Love, Karen

 
At 9:36 PM, Anonymous Anonymous said...

Rats! (Or should I say "oh, crap"....) Anyway, will be watching for news from Bethesda, where I guess you'll be headed tomorrow. Thinking of you.
Julia

 
At 7:59 PM, Anonymous Anonymous said...

Dear Phil,
Hey, I understood most of that. And Jeremy wasn't even grossed out. Of course, I have no idea if he knows what bowel movements are. If he did, that would be a different story, I'm sure. So what the heck was it? And do you have to stay on that medication just during the first several months, or what? Does it totally depend on its success? Well, let me know if you have to fly through here again. It would be great to see you with hair again!

Elizabeth

P.s. hi, Mary Catherine! Yes, that leek and potato soup is delicious! We have the same recipe, and it is oh, so good!

 
At 12:24 PM, Anonymous Anonymous said...

Dear Dr. Dong: I know about GVH in my practice and my wife's GVH after her transplant. My recommendation. Have chanx for 3 days and take a hot shower. Dr. Shlong

 

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