miocean

Kidney Transplant Evaluation

9 posts in this topic

I had posted on the other site about going to FL for evaluation for a kidney transplant in Sept. I wanted to wait until I was approved to let you know how everything went but after almost a month I am still not approved. They tested me for seven days and were very thorough, and, I thought, very organized. However they are still missing test results and information they were supposed to gather. It is very frustrating! I am trying to be patient but dialysis is difficult. I have a donor so it is just a matter of going through the steps to get it all done. But the steps are harder to get through than I thought they would be. Thanks for listening.


ISN Artist

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I am so sorry that you have to wait so long! It seems as though they should be on the ball and know what they are doing with gathering tests and information. Please know that I am thinking of you and I hope this all gets straightened out soon.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Janet,

 

How frustrating! I am so sorry you are in this "waiting" pattern. I certainly hope they get everything they need SOON, so that you can get approved. You are in my thoughts......and, please do keep us all posted.

 

Warm wishes,

Heidi

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Thanks for letting us know what was going on with you, but UGH!!! :angry: You would think they would try to expedite this type of approval, especially since you already have a donor. I hope you get some news quickly. Please keep us informed. Our thoughts are with you,

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Miocean,

Would you mind sharing the symptoms that have lead you up for a transplant? I ask because I am in Stage 3 of Kidney Failure and have some odd uncomfortable symptoms that I think are kidney related but they are not unbearable so I won't spend the money to see a doctor before my next schedule appt with my nephrologist in January '07.

 

Thanks. Take care

Judy


There are over 1,000 patient and caregiver stories on the main Sclero.org site.

Warm regards,

 

Judy Devlin

ISN Archive Committee Chair

International Scleroderma Network

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Hi Judy,

 

Can I butt in here? I know we have talked about your kidney problems, but I feel rather concerned about your "odd uncomfortable symptoms"., which you think are kidney related. From my experience I found that even if symptoms were not unbearable it didn't pay to ignore them. Only a doctor can decide whether or not you should ignore them.

 

May I ask what the symptoms are? Or you may email me if you wish.

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Miocean,

 

I am sorry that you are being held up, because once you set your mind to go through with something it is so hard to wait! But you hang in there, and I am sure the wait will be worth it!

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My kidneys failed rather suddenly. I had been sick for a few months and had just received the diagnosis of scleroderma. My legs were very swollen and my urine was foamy. I started throwing up and could hardly walk. I went in the hospital and when they took me down for a CATscan I stopped breathing, my heart stopped and my kidneys failed. So I didn't go through any stages of kidney failure. Try to keep your kidneys going because dialysis is no fun.

 

I go before the committee today for approval for the transplant.


ISN Artist

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Miocean,

 

It seems that there is no hard and fast rule for what happens when one's kidneys fail, particularly I think due to scleroderma! I was diagnosed with kidney failure a bit over 3 years after being diagnosed with diffuse scleroderma, though I had the sclero symptoms at least 9 months longer than that.

 

It is quite possible that my kidneys were failing for some time before it was picked up with a routine bloodtest that my creatinine and urea were much too high! But I wasn't monitored closely at all in my early years of being ill, so who knows. Unfortunately by the time my blood test was picked up it was really too late to take any measures to stop the kidney failure progression. I was really at the stage they call ESRD, or End Stage Renal Disease! Ugh! I think they COULD find a better term!

 

But as for symptoms........ I didn't have any that you had, and even my BP was normal, which is certainly not always the case. (Mine has gone up since). But between being diagnosed and starting dialysis, which I have been on for nearly 6 years, my only symptoms were feeling nauseated more than usual, and not having any appetite.

 

So, like you, I didn't go through any stages, not that I knew of anyway. But apart from that our kidney failures bear little resemblance.

 

Good luck with your approval for the transplant!

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