frieghtened, I can tell you a story of what I went through. It does seem to be the end of the world whe you don't know much and you are starting into the pre-transplant testing.
This isn't to make you feel worse but to let you know there is a light at the end, and my story is one of a lot I have told since I transplanted.
It all start for me back in 1999. In a return trip after doing a start up in Denmark I gave blood at the plant for a friend that had a bypass. I was home about
a week and headed back to Denmark for a month while a was there the wife call and said I go a letter for the blood center say I needed to see a doctor and not to give blood again.
I kind of blew it off after I got back and two months later I passed out one day. It was only for a min or so. The wife got me in to the doctor I went from his office to ICU and spent three days there and then 12 more days in the hosptial. I had me first bleed I had lost so much that they stopped pulling blood samples for three day because it was dropping my level each time. They told me I had Hep-C and that my liver was in bad shape and Set me up to see the doctors at Baylor in Houston the next week. Well after three more week of test and all the meds your man is going through They told us I needed a transplant. Well we figure a few years before I would be in trouble. They told us something we didn't want to hear. I had six months a year at the very best. We were crushed! We had no idea that I was that bad. and they started me on pre-transplant test to see if I could do it.
I didn't have the water problem but the Nh3 and Protien was my biggest problem with in a month I was so sick and hated lactulose, lasix and felt the same as you. Felt all my time was sleeping or in the bathroom. March 2000 I made the list all seem to be going well then I was taken off the list for three weeks due to a kidney problem that turned out to not be a problem.
The pain does get you down and they will tell you you have to get worse. When I made the list I was a three like everyone. We were like Hey I got a year shouldn't I be higher on the list. With so many people wait on the list you have to get sick and a lot sick to move up in rank. The list isn't just you state or area it the whole USA. When you start finding INFO thats a lost of people and a lot in the same boat you are and worse.
All went well if you can call it that till mid Sept 2000 when I had my second bleed I was at home that I just didn't feel rightall evening. They had gave me a test kit to test myself for blood. I did it and it showed a little but not as bad as the first bleed. They had told us if I show sign of a bleed to get to a hosptial as fast as we could. So be didn't head into Houston we went to the closest one were my GP was. Got in to the ER at midnight. They ran test and I wasn't that bad and were trying to get my gastro guy in there to handle me. Well he was out of town and his stand in wasn't picking up the phone.
4:00am I started passing blood and a lot of it. Off to ICU I went. By 8:00am I had lost so much blood they had my bed jack up I was almost on my head My blood pressure was 62 over 40. The doctor showed up and they took me in to start the banding on the neck to stop the bleed. they got that done and then loaded me on to life flight to Baylor down town. I went from the bottom of the list to the top.
I spent 16 days in the hosptial most of that they were trying to hold me hoping a liver would come up. When they had to send me home they told me to go home and get all my afairs in order and do not do a thing to just stay in bed as much as I could that i only had a few days or a week or two at best. We went home and could believe this could be it. Did what I could which wasn't much Got the call eight days later at 2:00am that they had a liver and it was in route to Baylor and I needed to get there ASAP. After I was told three people had been call but I ended up being the best match I went under at 6:00am and woke up in ICU at 5:00pm. I just though the last six month I had had pain I had more tude runing out of me than I ever figure they could. Will I was out and and back at home in four days after a about
a month I was walking a mile and Just got better after that. The first tie I wife got to see me in ICU she said my color was the best she had ever seen in the 25 years we had been together.
Now after four year I doing ok I on week 34 of my Peg treatments for the Hep-C. A transplant doesn:t fix that problem But I was clear at 12 weeks and have been since. I think it isn;t that bad see what I have already been through I easy to handle after what I been through already.
Hang in there!! It seems like they are just shoving you from one thing to the other but when it happen it fast. With what they hae learned in the last five years a lot more people are getting a new life. It doesn't seem that way when you waiting but number of transplants have doubled in that time.
Best wish and don't give up.
Post Edited (weav) : 11/13/2005 7:42:45 PM (GMT-7)