I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: WfMonkey on May 04, 2011, 11:08:04 AM
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I have FSGS and my GFR jas gone from 30 to 13 over the past 6 months.I am still pre-dialysis and my neph has suggested that a preemptive transplant is the way to go. I'm from the UK but have lived in Los Angeles for many years; LA is my home.
My brother has offered me his kidney and contacted the local hospital in England. I did see a nephrologist there a year ago (when my GFR was 37).Tthe living donor coordinator first said I don't need a transplant and second started asking questions about my residency status. Apparently under the new UK government being a British citizen no longer qualifies for health care, you need to be a resident. I'm well insured in the US and could easily have the procedure here, however it doesn't seem fair for me to ask my brother go fly halfway around the world to drop off an organ...
My question is how many tests need to be done prior to transplant? My dream is that I will go to the UK once or twice for testing, then return for the surgery. Is this realistic? If the NHS refuse to treat me and my brother ends up coming here, how long will it be before he can fly home to England? I really don't want him to be stuck here for weeks while I am incapacitated and unable to care for him.
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As far as test go, seems each center is a little different and then you need to coordinate what the center in England wants. On top of that once you have a transplant and back in the states, you need a transplant center to follow up with your care or problems. Here in Chicago, some centers will not take in patients who have had a transplant from another facility for follow up care, so you need to ask around your area about that. Can you afford to travel back and forth to England? If so, be prepared to stay longer than expected and the same would go with your brother if he came here. I think the average stay here for donors from reading post over the years is about a week, but need to be followed up post surgery, heal for a bit before getting flight clearance.
Good Luck and plug away till you get your answers.
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hi
good luck with a transplant from your brother. Would your insurance pay a private uk hospital to do it??
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I can afford the monetary cost to fly back and forth to England. What is harder to come by is time. If I lose my job, I lose my insurance and that would be...well I don't even want to think about it. My brother on the other hand gets very generous sick leave and 6 weeks vacation a year so has more time available. Plus having lived in England all his life the idea of paying for healthcare is preposterous to him. He is not keen to come here to donate, which I completely understand: he wants to be home with his wife and family...
My focus is getting this taken care of with as few international trips as possible for either of us. Anyone had doctors in different countries collaborate to evaluate donor compatibility?
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I think communication with the transplant center in England would be key to get the ball rolling to see if they can send orders to your doctor to do or another transplant hospital to coordinate efforts to do the right test and to send results through the internet or next day air. I think it can be done, but may take advocacy on your part to get ball rolling. I can not think of a post doing something similar to what you would like to do.
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Well I heard from the nephrologist and the transplant coordinator in the UK today. I'm going on May 19th to get tissue type testing done. Now the doctor is involved, the resodency questions ahve stopped. I guess I will find out more at my appointment.
The UK nephrologist is concerned about FSGS reoccurring, and suggested that a zero match transplant may be more successful than a family donor. I saw an FSGS specialist at UCLA who felt that this risk was low (although it does exist). I don't want to waste my brother's kidney, and a close friend has also offered to donate...
Any opinions?
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I think it is better to do transplant in the U.S. since you are in the U.S. The after-surgery care is different between the donor and patient; it does not need much care for the donor but needs a lot of care for the patient. A lot of testings for the donor can be done in the U.K. and the donor can come to the U.S. for final tests, interviews and surgery. It just needs a center to speed up the donor evaluation if the donor does not want to make more than one trip to the U.S. Since your brother has leave time, you can pay his ticket to the U.S. If you go to the U.K. for transplant, you may need to have a long leave from the work.
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WfMonkey,which hospital in UK? :)
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QA in Portsmouth (Cosham)
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I don't know that hospital, I live in Chester and have a spare room, which you could gladly have had while you were here, but unfortunately it's very, very far from me!
Still, offer's here if you ever need a holiday! :laugh:
Best of luck with alll the tests!
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Carla thanks for the offer!
Well today's the big day; tissue tests and blood tests today. I flew in last night and can't sleep.
I'm not absolutely sure what to expect but my brother and I meet with the LD coordinator today and the neph tomorrow. The said they will courier the blood and tissue to a lab in London in order to get results for Friday. Anyone have an idea of how many rounds of tests we will both need? My brother already had a basic physical and we know his blood type is ok.