transplant center far far away, questions...

[wife]

Hello you wonderful helpful people.  I am an occasional lurker, but I have a question I haven't found specifically asked yet so bear with me.

I am (hopefully) donating a kidney to my husband.  He has been on dialysis for two years.  We have an amazing 14 month old baby boy.  We don't have any good friends in Montana.  Friendly acquaintances, but not good friends.  Actually, now that I think of it it wouldn't matter if we did because the nearest center is Utah (400+ miles away), then Seattle (500+ miles away).  So we were thinking about going to California (1000+ miles away) where we both have family to help us with the baby and driving to appointments and stuff. 

So my question is  - how often do you have to go to the transplant center,  both pre and post transplant?  Is there anyone else that travels a long way to theirs?  How much would they let us do long distance?

I know that after the transplant he has to be in the area for a while.  Our work is seasonal (summertime) so we were thinking that if we try to do the transplant at the beginning of the winter then we will be able to stay around for as long as they want us to without any worries.  But after we go home how often (assuming everything is going fine, which I know is anyone's guess) will they want us to come back?  Is it mostly labs that we can do long distance or do they actually have to see you?  Who is the doctor that runs the meds?  Someone associated with the center or his regular neph?  I see people talking a lot about how their meds change post transplant, that's one of the reasons I am wondering if they are going to want to see him all the time.  And if he has some problems does that mean we would have to drive right down there or can some problems be dealt with through his neph or the local hospital?

He is healthy other than his lack of kidney function and all that goes along with that. 

Ok so that was about 20 questions but you get my gist.  Are we nuts to do it so far away?  Make that 21...

Thanks in advance

And Merry Christmas!

[okarol]

Our daughter's transplant was at a hospital 120 miles away, which is not as far as you'd be dealing with, but just far enough to make it easier to stay locally near the hospital. We had a friend who loaned us their second home near the hospital and we stayed there 5 weeks. Jenna had to be seen in clinic 3 times a week the first 3 weeks, then twice a week after that. At 5 weeks we were able to do labs near our home with the results sent to the transplant hospital. Then we visited the hospital at 3 months, 6 months and one year. Her meds were all done via phone/mail order so that has been easy.
If you're going to donate it will be very tough to pick up a toddler, for both you and your husband, for a couple months. I think you'd need daily help for some time. You might want to visit the forum for living donors to get perspectives from other people who have donated http://livingdonorsonline.org/ldosmf/index.php - and you can post questions there too.
If there are any complications I think your husband would need to be seen at a transplant hospital. You'd need to have a plan in place, and a transplant coordinator should help you with these details.
Best of luck to you both!

[coravh]

My transplant center (U of MN in Minneapolis) is 850 miles away from my home. I initially stayed a couple of months due to some complications, but basically for the last 9 years I go once per year for follow up and get my labs done locally. It works well for me. I get the copies of my labs andn phone them in to the center. So I'm always in the loop. So far so good. Knock on wood.

Cora

[wife]

Thanks okarol for that link. I found this site on there http://www.livingdonorassistance.org/default.aspx which looks like they could be extremely helpful with paying for the travel...

Once a year sounds good Cora.  It would be nice to see my family that often anyways.

We got our first call from the transplant center today and I am kind of surprised by how much travel they want us to do for the testing.  First my husband goes to Stanford (the center) for a class and some tests.  But they won't look at me at all, they want to make sure he is a candidate for transplant.  Which I suppose I can understand.  Then if everything looks good they might draw my blood while we are still in town.  If we find out we are compatible then I can go to Utah to another, closer center (still 400 miles away though) to have tests done.  Then I go to the Stanford for more evaluation that has to be done there.  Then we can schedule the transplant.  So that means a minimum of two trips to Stanford and one to Utah prior to the trip for the actual transplant. 

Am I crazy to think that there has to be some way to consolidate this?