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Some of you know from other posts that I have been trying to get into a research study/clinical trials for islet transplantation. Its been a long haul, over a year since I first had contact with the university doing the study, but I've finally been given approval for the transplant! woot! yay!
I'm on a waiting list. I have no idea when the transplant will take place. Could be today could be in 6months. I figured this was a good place for updates and to keep track of the whole process.
The study is taking place in Chicago. If anyone is has been type 1 for over 5 yrs and is interested I can get you an email address and url if you want more information. You do not have to live right in the chicago area as long as you can get to there within 8hrs of them calling you for the transplant.
parrot |
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Good luck with that, Parrot! Hope you don't mind, but I have some questions. What was the approval like? I know everything I had to go through for my kidney, and it has pretty much been chronicalled here. Wondering if it is the same for the islet cell transplant. Will you be required to take immunosuppression? Is it surgery or just a big needle (sorry if that seems ignorant, but you are getting cells or a part of an organ?) I pray that all goes well for you, and that your wait is not too long! God Bless you! sheryl |
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I don't mind the questions. First I had to fill out a questionaire that was about 15 pages long with my health history and have my Dr fill out a page of it. After they reviewed that I had to go to chicago for bloodwork. an ultrasound of my abodomen, carotid artery ultrasound and heart ct-scan. Some of the tests were for research purposes, like the heart ct-scan and carotid artery ultrasound. Some of the bloodwork they did was to determine if I produce any insulin at all. Any insulin production disqualifies you for the transplant. They also had to rule out cancers and I had some tumory things on my liver ;) so I had a biopsy, which was negative. They also did tissue testing and bloodtyping. I also have situs inversus of the abdomen, which means my organs are backwards ;) my stomach is on the right instead of left etc so I had to have more detailed ultrasounds of my abdominal organs to make sure that would cause no problems in the transplant. The situs inversus isn't an issue either. Its just wierd ;)
I will be on immunosupressants afterwards for indefinately. Some I will be on for a few months, two of them perminantly.
the transplant is of the islet cells only, after the cells are isolated they are injected into the portal vein, and then transplanted into the liver. so they will use a big needle, but they said the needle is smaller then the biopsy needle they used on my liver and that wasn't a bad procedure at all.
I will be in the hospital for 12-48hrs and then return every other day for two weeks, twice for another week and then once a month for four to six months so they can monitor me.
http://transplant.hospital.uic.edu/transplant/islets.html
has more specific information about the transplant procedure and contact information too if anyone is interested.
parrot |
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| | From:  ayn-05 | Sent: 3/9/2006 2:13 PM |
| that's very interesting. thanks for letting us know about it, and i hope that you'll keep us posted. |
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I wanted to post but instead just cut and pasted another post from antoher board i'm on, if any of it causes questions lol sorry ask and I shall answer.
by now some of you know I went in for the transplant on saturday night. I got the call around 9pm at work and wasn't sad to leave work and hour early and ditch the closing cashier shift. (be careful of what you wish for...)
We got to chicago about 2:30am and I immediately had iv's jabbed into my arm (2, one arm. ouch). At 6am I went down to radiology for the transplant. It took about 3hrs. I was drugged on fentenyl and some sedative I can't remember the name of at the moment. There were a few parts I remember of the translant, mostly the ones where I was saying "ouch!". no so fun but they'd give me more drugs and out I'd go again.
The real fun came later in the afternoon when I kept saying my abdomen hurts and puking and having horrible muscle spasms where the abdominal pain was. the next morning my favorite patient advocate at the hospital (otherwise known as Transplant Nazi or TN) who insisted on having the radiologist that did the procedure look at me. I was already scheduled for an ultrasound and he also did a ct-scan. Results?? I have a hematoma on my liver, which is a fancy word for "bruise that hurts like hell". The hematoma is in the liver capsule which is now extended and pushing on my stomach and a lung. The stomach part hurts and is making me nauseaous (along with meds making me nauseous) and the lung thing doesn't bother me anymore. yay.
k I'm super tired so more later, but to not leave you hanging. the pain moslty gone and nausea is better but still there. Oh , yeah, and i'm out of the hospital.
on the mend....
more later
p-zoo |
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Installment number 2
So my bruise that hurts like hell doesn't hurt anymore. I"m off all narcotics. yay! and only taking tylenol and ibuprophen every 6-8hrs to maintain pain control.
My blood sugars have been excelent thru out the entire ordeal, my highest bs, post transplant was 152. (i think, i could be wrond but that is the number that sticks out in my head as highest). Lowest was 68 and boy did the nurses freak out about my "low". haha! lol I managed to drink grape juice and keep it down to get it up to 80 which no one thought was too low after a itlow. nice feeling.
I'm on a ton of new meds. i came home with 16 new meds, plus im still on the ones i was on before so now i'm up to 20 drugs, popping and pushing and geez, I have a higher street value then I do IRL. lol
This morning I refused to eat (and hence put off the taking of one of the meds making me nauseous) until I spoke to the dr. He agreed that I should take a break from it and go back on it in a few days and see if I tolerate it better then. (somehow I think fat chance but we'll see) If i don't tolerate it better then it means I'll be taken off of it perminantly instead of in 6 months from now. It also means that the graft will be more likely to fail or not work as well but you have to eat to survive so I'd rather pump then puke. ;) I guess it also means I may need 2nd or 3rd transplant to get off of insulin totally. we'll take those things as the come.... :)
thanks for all of your posts, well wishes and phone calls, I know I missed a couple of calls because I wasn't in the room or was sleeping. sorry I misssed you. It was still great to talk to the ppl I did talk to. ;)
melissa ended up printing all of your posts and brining them to me at thehospital which made for a good read ;)
parrot |
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