Not quite as bad...

[Restorer]

Sorry to come back on such a sour note on my other thread. It's just hard dealing with things when I've been in terrible condition for 6 weeks and having to visit the clinic just to get things "fixed" 2 or 3 times a week.

The good news, though, is that I'm finally making some progress toward a transplant. UCLA isn't dragging their sluggish butts as much, and I have my first (yes, just the FIRST) transplant appointment on May 20th. I wish it weren't so far away, but there's nothing I can do about that. Anyone know how many appointments UCLA does before approving you? I kept hearing two - one to educate people about transplants, then one to do the testing. My letter says at this first appointment I'll be meeting with the transplant nephrologist, coordinator, and social worker, and the surgeon "if applicable."  I also need to have a list of tests done. It seems like this would be the major, and only, appointment. I don't know.

Also, I currently have three donor offers, two of which I think are entirely serious. My mother's been offering her kidney since I learned of my kidney failure, and two of my good friends have offered. Does anyone know anything about the process of getting donors tested when they're across the country? Oh, actually, I guess both of my friends will be much closer, just upstate, by the time I have my transplant appointment, so that should smooth things out a bit.

In the meantime, I'm doing everything I can to survive despite the problems I've been having with PD, and really hoping they resolve and I don't have to switch to hemo.

[MooseMom]

We don't mind sour notes.  We get a lot of those around here.

I can't answer your question re UCLA, but I am going through the transplant eval process through a Rush University in Chicago.  I had one appointment during which I met the transplant coordinator and one of the surgeons.  I had 13 vials of blood drawn, plus the surgeon examined me.  Then, the tranplant coordinator gave me a list of the tests I needed to complete; I had anticipated this and had brought along results of some tests I figured they would want done (Pap Smear, colonoscopy and mammogram).  I'm not in too bad shape, all things considered, so my test list was not as lengthy as it might be for other patients.  I did have to return to the transplant center at a later date for a required appointment with the Social Worker.  They gave me three months to complete all of the tests; I did it in one, and now I am just awaiting their final decision on whether or not to list me (or if they want me to have more tests).

I don't have a donor, but I'd be interested in how things work if a donor is not local.

I do hope you get your problems worked out and will feel much better soon!

[monrein]

I'm in Toronto, Canada so things are different but my donor was my sister in law who lives in northern Florida.  She did her first bit of blood work there, just to see if she was a match then she came her in November 2008 for a week and met with her social worker, coordinator, surgeons (she met two and chose one based on the way they each did surgery...she opted for non-laproscopic) etc.  She also had various other tests done at that time.  Then she arrived a week before the transplant for final blood work and she stayed three more weeks after the surgery.  All costs were paid by the hospital and our provincial insurance and she was also eligible for up to $3000 in related expenses.  All went very smoothly.

Best of luck with everything Restorer and I'm really sorry to hear how difficult things have been lately.

[Jean]

I have no knowledge about it Restorer, but just wanted to say it is good to hear from you. I have thought about you a lot and wondered how you were. Sorry for the problems, and hope this transplant gets underway soon for you.

[paris]

Great to hear from you Restorer!  I am sorry things haven't been going well.  I hope the transplant people keep things moving quickly and get you listed.  It took me a few months to get everything done. It seemed like they always found one more thing to test.  My possible donors got blood test kits from the transplant center to have drawn at their local lab and then FedEX'd back.   That is as far as we got. At least the first part of the process can be done long distance.   Wishing you good thoughts during all of this.   

[Restorer]

Thanks everyone. I have some forms to fill out and bring with me, and a list of tests to have done and have the results sent to UCLA - looks like a fairly complete list: blood type, serologies, recent clinic lab results, nephrology history, social worker notes, chest x-ray, EKG, adenosine stress test or dobutamine nuclear cardiac perfusion study (that's the only one I don't know about), renal ultrasound, etc.

As far as my friends go, they're both moving in together about 7 hours north of me, and might even be able to come with me to that appointment if it's appropriate (I plan to call as the appointment gets closer to see if bringing interested donors would be a good idea). I also want to remember to go through the posts here and see what kinds of questions I should be asking - whether they have a steroid-free protocol, whether they can do a transplant with non-matching blood types, and on and on.

I hope I start getting better quick - the idea of doing a stress test all fluid-overloaded and the way I feel now, isn't a great thought.

[Kitts]

I do believe Cis and I intend to be there whether the folks at UCLA think we ought to be or not--if only to drag your tired butt home after all the fun times.  Try to stop us. 

[monrein]

I do believe Cis and I intend to be there whether the folks at UCLA think we ought to be or not--if only to drag your tired butt home after all the fun times.  Try to stop us. 

Good friends rock.

[Restorer]

I do believe Cis and I intend to be there whether the folks at UCLA think we ought to be or not--if only to drag your tired butt home after all the fun times.  Try to stop us. 

Good friends rock.

I have the best friends.