I have never attempted to try anything like this site, so I am somewhat unsure about what to write... I guess I'll just tell my story and hope to move some of you.
Life was good. We were comfortable. Then came the curve ball. I had a heart attack in 1995, and no one could figure out why. I was discharged with no 'Dr's orders' to follow. No medication. Simply watch what you eat. Life went on. Until 1997, when I had my second heart attack. This time things were different. I was diagnosed with polycythemia vera. What the heck is that? Never heard of it! I learned quite a bit during that time. To control the disease I had phlebotomies every three months or so. In 2002 they stopped the blood draws and put me on hydroxy urea. This went on for 12 years. After a couple of years it seemed as though I had no disease at all.
2009... cellulitus. I was remodeling the pantry for my wife, and dropped a 1x2x4 on my foot. Didn't even break the skin (I was wearing sandals. Stupid me!) A week later I was in the hospital, my foot as big as a football. I couldn't walk.
2010... I have been a truck driver since I was 18. I love the open road, the freedom, the ability to see the country and get paid! I have delivered and/or picked up in 49 of the 50 states. I was taking a load to MA when I developed a severe hematoma. Back to the hospital: 5 more days... and no diagnosis. No one could figure out what happened. More pills. Go home and be careful.
Continuing on, later in 2010 I developed dry gangrene in six of my fingers. Damn disease was eating my fingers away! I was sent to a plastic surgeon, who wanted to schedule surgery to remove my fingertips. No way! Without rhyme or reason, they all began healing, regrowing dead tissue. No one could explain it. If you looked at them today you would not be able to tell how bad they were.
Life went on, with more pills and meds. I woke one morning feeling horrible, and couldn't shake it. Things got so bad that we went back "˜home'. After 2 hours in the emergency dept. we got the news. My blood sugar was 600! Again, no one could figure out why. I am not overweight (I'm 6'0" and scale in at 185). Two shots of insulin, a prescription for Metformin, and home we go again. We eat an overall healthy diet, have sweets very rarely, and although I don't exercise per se, I am by no means lethargic.
And the wheels just keep on turnin': I was referred to the Cleveland Clinic for a drug trial. Wonderful place, very impressive. I was accepted into the trial, but had to stop taking the Jakafi immediately, and be off it for 30 days before I could start the trial. Okay, I'll do what the doctor says, even though both my wife and I questioned stopping it cold rather than weaning off of it. We were told not to worry. We drove home and less than a week later I was in horrendous pain. I had not been able to keep anything down for three days, and was starving. Hello, hospital? Get my room ready, we're coming back! Five days later my weight had increased by 19.4lbs! Went for another CAT scan. Emergency! Your spleen is about to rupture! Into a four hour surgery, then recovery and ICU. Three days later I went back to my room. The surgeon explained that I had a spleenial infarction, and it had begun to rupture. I nearly died, literally. For those of you who don't remember biology, a normal spleen is about the size of your fist. Mine was over 15lbs! A picture of it follows. It was too big to put in the specimen dish. They could not weigh it because the OR scale only went to 12lbs. I went into surgery weighing 204: four days later I was 158 (I am now up to 173).
Well, that's my story, and I'm sticking to it. Another unfortunate sideline to all of this is that I am no longer able to work, and haven't been able to in quite some time. All of the hospital visits, doctor visits, and trips to various specialists have drawn our bank account down to nearly zero. The dozens and dozens of co-pays have wiped us out. Now it is affecting our mortgage and utility bills as well. Both my wife and I have always been proud, hardworking people, and we now turn to you for help in our time of need. God bless you all for taking the time to read of our plight: and we wish you the best.
John and Paris
Addendum: it is October 16, and the hospital just called. My transplant has been scheduled, and I begin getting daily doses of radiation to kill my bone marrow on November 6. Talk about being wildly excited and scared to death at the same time: :)
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