@pjrushin
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Registered: 8 years, 3 months ago
In 1989 my father was diagnosed with MDS. He was 62 years old and considered too old for a bone marrow transplant, so he was treated with increasingly shorter term blood transfusions. He died at the age of 65. Coincidentally (?!) in 2015 at the age of 62 I was diagnosed with MDS. Although this is rarely an inherited disease, according to my doctors, this rare guy seemed to have inherited it anyway. That or 35 years of cigarettes before I quit in 2006 after a heart attack, or youthful-days jobs working with God-knows-what kind of carcinogenics (a year's stint inhaling methylene chloride comes immediately to mind) but there you go. Pancytopenia City, just like my beloved old man. After a few months of wait and see, I got an allogeneic stem cell transplant with my lovely sister (a 10/10 match) serving as donor. All went extremely well until around day 120 when I developed oral and ocular GVHD, both of which persist to this day, though neither has diminished my quality of life, and I'm damn lucky it never hit my liver or lungs. The main problem for me is that I can't eat spicy food, and believe me, I've been a spicy food lover most of my life. Now, even a speck of black pepper (forget about hot sauces) will make my mouth burn like the gates of hell. I've become a pretty good cook since then, substituting flavor in my spices for heat. COVID-times have generally kept me the chef of my own ship, but more recently every trip to a restaurant becomes an adventure in what's on the menu I can actually eat, entailing back-and-forth waitperson trips to consult with the kitchen. I do appreciate the extra effort, and I've become a hefty tipper these days, as should we all be... but I'd rather cook my own food. Ask me for my chicken saltimbocca recipe courtesy of Giada De Laurentiis which I've purloined and, so I claim, improved on. As for the eyes, thrice a year I go to the Mayo where they draw my blood and turn it into eyedrops that I use four times a day. After my first three months of treatment, my ophthalmologist (again at the Jacksonville Mayo, one-stop healthcare shopping for me) told me my eyes had improved 95%. So that's me. This summer I'll reach eight years of complete remission. I'm currently taking 0.5 mg of tacrolimus twice daily, and I've had a couple of episodes of blazing mouth sores when we've tried to taper down to 0, and the only cure has been mega-doses of prednisone which I hate, hate, hate... but all in all I feel good and lucky. Lucky also to have a wife who's an RN and a daughter who's a PA who both keep an eye on my health much more than I think is necessary. But to totally rewrite Forrest Gump: "Grateful is as grateful does." Happy to help anyone here who needs any of my advice.
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