I am extremely pissed right now!!!!!

[paddbear0000]

    I have been feeling much worse for the last month or two, to the point that my nephrologist started talking dialysis with me. My transplant coordinator and surgeon had a meeting Friday about me and have decided that it is too early for me to get a transplant and they feel I should meet with their transplant nephrologist!!!  WTF??!!! Hello? First of all, this is supposed to be a preemptive transplant. Doesn't this mean I want to try to get the transplant before I need dialysis? Yes! And second, I'm trying to get listed. Which means I will be waiting, thus at this point, I will probably be starting dialysis before I'm called anyway. I am so angry right now! I missed the call and heard the message around 3 today. I tried calling my coordinator, but got his voice mail. I won't even get to talk to him about this until tomorrow.

Sorry about the rant!   

[thegrammalady]

rant away. i hate hurry up and wait!

[monrein]

Paddbear, I went back and reread some of your earlier posts, going back about a month or so and based on your description of your symptoms I am quite confused by the plan that you and your neph seem to be working on.  I may be missing something here and I don't presume to know what is best for you but here's what I'd be asking for.
  The first thing is I would want a fistula created at least a month ago.  They take time to develop (sometimes up to three or four months, sometimes less depending on various factors) and if you never use it because you get a transplant, no major harm done as I see it.  I know you're hoping for a pre-emptive transplant but no one can really tell you for sure how long you'll be waiting for a  kidney/pancreas combo.  It's not the same as a living donor transplant where you can schedule things and at this point you aren't even listed, if I understand things correctly. Wait times are averages, rough guesses and far from exact.   I also understand that you are trying to hold off on dialysis for as long as possible but if you're feeling really crap and it sounds as if you are there's not much to be gained from getting sicker and sicker, becoming possibly malnourished and losing muscle mass.  If you feel too sick to be getting reasonable exercise, you also aren't keeping yourself in the best shape you can for surgery.  I would think it preferable to do some dialysis so you feel better, and be surgery ready.  I would worry about pinning all my hopes on a pre-emptive transplant because it seems fairly remote that everything will line itself up in perfect order of your body's timing and organ availability.  Without a fistula you'll be relying on a permacath into your chest, going into your heart and personally I'd not want to be going into transplant territory with that as my access.  They're fantastic for emergencies, as a stop-gap but they carry the risk of infection and I myself detest them. One other thing is that I always think to myself what if my transplant doesn't work?  I'd have to be back on dialysis and I'd want my fistula to be there for me.  

I hope that I haven't overstepped any boundaries in saying all of this Paddbear.  These are simply my thoughts that I would be applying to myself if I were in your situation.  I think you do need to speak with your coordinator to better understand your team's thinking about what they mean when they say it's too early for you to get a transplant.

This is a super stressful and frustrating time and I'm so sorry that you are getting a degree of run-around from the hospital on top of feeling awful.
 

[Jill D.]

I totally understand where you are coming from Paddbear. I had my transplant evaluation in November 2003, when my GFR was around 15. I planned on a preemptive transplant as my sister was approved as my donor in February 2004. However, both my nephrologist and transplant nephrologist felt I should wait and at the time I still felt pretty good. In January 2005 they felt we should schedule the transplant so we planned on August. By May I was on 3 or 4 additional meds, including Kayaxelate (sp?) and phosphate binders. My August transplant was cancelled because of my high PRA, and my biggest concern was that I would end up on dialysis before transplant and then I would be "sick". Since the transplant was so much in the air, I was scheduled for a fistula in October 2005 "just in case" I needed dialysis. I started feeling worse and worse, and by April 2006 I started dialysis (my GFR was around , and as Monrein stated, I did start feeling better after about a month of dialysis.
I believe you had your transplant evaluation completed? If so, I think you should ask why they can't get you on the list if you are feeling so bad. I also agree with Monrein that you should inquire about a fistula "just in case" you end up needing dialysis before a donor becomes available. I wanted SO BAD to have a preemptive transplant but it really came down to the fact that, as much as dialysis sucks, I felt so much better getting the toxins and fluid out and was healthier when I had my transplant in December 2006.
When you talk to your coordinator tomorrow you need to push to get listed at the very least and remind him of your goal of having a preemptive transplant, but at the same time try to accept the fact that you may end up needing dialysis for a time and prepare for that. I really don't understand why they are talking dialysis, but feel it is too early for a transplant ()
I wish you the best!!! 

[paddbear0000]

I really don't understand why they are talking dialysis, but feel it is too early for a transplant () I wish you the best!!! 

Exactly my point! Although, it's my nephrologist in Cincinnati that was mentioning dialysis, but my transplant surgeon in Columbus, that says it's too early for transplant. Sometimes, I think maybe I should just start dialysis so that I can get listed faster! I have not actually finished the evaluation yet, and it was not the listing committee that made a decision, as they have not met yet. My coordinator and surgeon had a "preliminary" meeting first.

I did speak with my coordinator today. I think everything is going to be okay. They were basing this on old labwork from 3 months ago, before things started going downhill. He also said that my creatinine clearance from my 24 hour urinalysis showed I was at 25% function. All of my blood work from every other doctor I was seeing, showed I was at 18%.  They won't transplant above 20%. He said having my regular doctor and new nephrologist fax him my records would help greatly. I also saw my cardiologist today, and he said he'd send them a letter stating that I really need to get listed. I still have to meet with their transplant nephrologist, but that's fine with me if that's what it's going to take to further my cause. If he approves transplantation, then the committee will meet to make a decision.

[jonn r]

just ask them who wants the money first.........sorry i just had to say that.....

[paul.karen]

Good luck with all that.  I would get the fistula like Monrein said just to be safe.

Here in good ol New Jersey they wont even put you on the LIST until you have started dialysis.

P&K

[nursewratchet]

GET THE FISTULA!!!!!

[Jill D.]

Good luck with all that.  I would get the fistula like Monrein said just to be safe.

Here in good ol New Jersey they wont even put you on the LIST until you have started dialysis.

P&K

I live in Michigan and I was actually on 2 lists prior to starting dialysis after my first surgery was cancelled. I believe that the list I was on for Michigan also includes Ohio. I also was listed on Minnesota's list after getting evaluated at Mayo. They actually kept me on both lists even after my sister was approved as a live donor at Mayo for a positive crossmatch transplant. When I asked about it, I was told that I would stay on the lists until the transplant was a done deal. Some might think that's selfish, but I call it covering all bases.