I'm being denied a kidney transplant.
 

My doctor, and I were looking at the letter today at his office.

...After careful review it was decided by the team at this time you are not a Kidney transplant candidate due to:

Medical or psychiatric conditions determined not compatible with transplant. Your risk with transplant is determined to be greater than the actual benefit...

It's that word Psychiatric. It's that word. Due to: Medical(Stage 4 kidney disease severe)or psychiatric... That word Psychiatric. Psychiatric. I told my doctor that word has followed me all of my life. Does the word Psychiatric mean I'm less of a human? Does it mean my life is throw awayable. Are they thinking deep down with out realizing "Oh" "He's just a nut." Who's the next candidate?

The stigmatism of being labeled a person with mental illness is still out there. It might keep me from getting a transplant in the future, and I may die from Kidney failure.

I'm still thinking about that word in the letter. That word Psychiatric. It doesn't have anything to do with the need of a Kidney. BF:confused::Hum::frown::Noooo:

Dear Friend,

:grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug:

Lots and lots of hugs.:hug::hug::hug::hug::hug::hug::hug::hug:


M

What do I do if I don't eventually get the transplant? I suppose that I will be on dialysis until I die.

This is very depressing. I think that it's the mental illness that they don't like. It's not fair. BF:grouphug:

this is outrageous! can you contact some mental health rights agency?Can you write to the new york times. it is barbaric
hugs
bobby

What a crock of s***... I don't understand that rational at all.

I'm so sorry, BF :hug::hug::hug:

I think that discriminating against a transplant candidate based on their psych history is inexplicable and unforgivable, but the transplant program is very complicated...
The letter did say "at this time" tho, so I hope that if you begin to deteriorate, they will reconsider their position and put you on the transplant list :hug::hug::hug:

sending more hugs friend.
I think this is so unethical for them to judge you like this.
bizi

You can ask for clarification about the specific reasons they denied transplant..
I looked a bit for a list or process on assessing candidates, didn't have much luck, you might find it on the hospital you or clinic you went to..

I hope it isn't a case of bias.. It would be good to ask & follow up for your own knowledge, and if it is bias... That should be questioned..
Your Dr should be able to find out why if they don't know the reasons of denial..

I did find this - you would need to take immunosuppressant (anti-rejection) medications to keep your body from rejecting your kidney.
Maybe that would have bad interactions /side effects with any meds you take now.

I know of 2 people - 1 has been getting dialysis for years, has many other health conditions so not a candidate.. the other is in process prepping for dialysis got a port last summer, but had problems and it is needed to be redone.. He has other health issues too..

Some info - qualifications to receive a kidney transplant - Google Search

I got a call from one of the transplant team members this morning. My doctor may have called them. They may put me on the transplant recipient list again if they know that I have a care giver after the transplant in about 5 years. My niece plans to come with me. Right now she's taking care of her 2, and 4,or 5 year old children.

My case manager was negative with me on the phone this morning about transplants. She said it's a long road. I said I have been on a long road for about 48 years. It was 48 years ago when I had the bad panic attack at a Military School. Long nights, panic, and etc. She may have not been in a good mood because it was cold, and rainy. BF:grouphug:

Dear Friend,

It is good to get information and hope.

M

Brokenfriend, I am sorry to read this.

I hope that you can keep digging.

I know a bit about it because my father and his brother (in NZ) were candidates for kidney transplants. They were both assessed as being ineligible because of (different) underlying physical health problems.

Psychiatric assessments were not even considered as part of this.

:hug:

I'm happy that you got that call because it sounds like there is still hope :hug::hug::hug:

Maybe the issue was there was concern that because you have significant mental health issues you may have a hard time taking the anti-rejection medication regiment as necessary after the transplant. I still call BS on that because they chould have talked to your MH providers first to assess your level of functioning.

I'm sorry about the call with your case worker. I hope that she has a better attitude/is in a better mood the next time you talk to her :hug:

I'm so happy that your niece will be coming with you. You are loved. We love you, too :hug::hug::hug:

Thank you Kay. BF:hug::hug::hug:

I'm going to the hospital tomorrow. I see a social worker, and then a surgeon. The social worker is part of the transplant teem. They are still determining whether I can be capable, or eligible of receiving a transplant.

I still struggle with this process. I don't know what they are doing, or thinking. Are they looking at my mental health issues as the letter said? Are they being fair? I don't know what to think. BF:confused::confused:

Dear Friend.
I am happy that you are going to see the social worker and the surgeon.


Ask them these questions you have.


M

I'm glad that there is a social worker on the transplant team. I hope that he/she is someone you can reach out to when you have questions in the future. I hope that everyone on the team is approachable, amiable, and can answer the questions that you have (you may want to bring a list).

I wish you the best of luck today. I will be thinking of you :hug::hug::hug:

let us know how it goes friend.
(((((HUGS)))))
bizi

Friend
Thinking of you

They want to do some pre-dialysis surgery on a vein in my left arm in May. A nurse, and I were trying to figure out what happened to my kidneys. She said that it could have even been a virus that caused it. ??? BF:confused::hug::confused:

BF,

Let them do the thinking.
Just follow whatever steps they ask of you.:hug::hug::hug:
:grouphug::grouphug::grouphug::grouphug:



M

It is nice that the RN wants to help you find out what caused your kidney failure, but answers like that must come from your doctor(s) :hug:

Ask very specific questions about this surgery so you will know what to expect and such. I don't know much about that but know you could goggle shunts in arm for dialysis.
(((((HUGS)))))
bizi

BF,
At least they are working with you with does not seem to be only the mental issues as first assumed; but evidently want to do more testing and continue working with you in the future.

I don't think they would be doing all this if you had been eliminated. Even without mental issues; some are not a good candidate because they are not emotionally able to handle the surgery, as well as the resulting recovery.

I had to have psychiatric testing done to see if I qualified to get a Spinal Cord Stimulator Implant. I did get the okay to do the trial. Which did not go well. My doctor wanted me to do another trial. I declined. I realized even if the next trial was good, I would not be able to deal with the implant and the issues for recovery/risks.

Please try to give this to God to handle. He is so much better at it than we can be. I really feel, with prayer and trust; the outcome will be what is best for you.

They said that the dialysis will be 3 days a week. Not any more. BF:hug::hug::hug:

Those on waiting list often need to have dialysis until a transplant can be done.
I read that after a kidney transplant dialysis may be needed for a few weeks until the kidney begins to work. So either way it appears dialysis is in the picture.

Back to you:hug::hug: dear friend....

You are in my daily prayers..

Gerry

Brokenfriend, I think that taking some blood from an arm vein is a good sign.

Probably what they want to do is to check for any physical health problems and also do tissue-typing. Tissue-typing is important because it will let them match the best possible donor kidney for you when they become available.

:hug:

Most transplant recipients are on dialysis for quite a while before they reach the top of the list, get an organ, and have surgery. I hope that they put you on the list and you don't have to wait long :hug::hug::hug:

I'm learning about these things one step at a time. I'm also taking my situations one day at a time. Some of the operation procedures are scary, and I'm trying not to think about the details.

Some of the pre-dialysis operations are in several months. This means I'm going to need a care giver for a few days while my left arm heals. I hate to be a burden on my niece, her family, and my brother in law. I'm going to need there help. It's out of my control. It's in the Lord's hands. BF:hug::hug::hug:

I think you have a wonderful attitude and are taking the best approach to an overwhelming situation, BF :hug::hug::hug:

I agree with kay, friend.
You seem to be taking things in stride.
(((((HUGS)))))
bizi

BF
You have done all things necessary to line up the events that are in the making. Taking your situation one day at a time will help bring calm.
You appear to have "Let Go & Let God" be at the helm.

Gerry

Thank you Gerry. My life,my time, and my future are in the Lord's hands. Through whatever happens the Lord will be there. If I didn't believe, I would have given up a long time ago. BF:grouphug::hug:

BF,
Your Faith shines through ....
You are an inspiration to others.


Gerry

:grouphug:Hood luck

I found out today at the doctors office that I'm not on the kidney replacement list because I don't have a care giver. If they would want to get me out of the hospital so quickly, they should have a facility where I could go to heal. They don't help you to heal in a hospital. I thought that was what hospitals are for. Is a hospital now just a surgical center. Something has been lost in hospitals in the last couple of decades. They should have a solution for this problem. They don't allow you to heal in a nursing home. They say the nurses don't keep up with the medications in them. What's wrong here? It's not right. Don't they have a step down facility where you can heal? If they don't, why is this. It's wrong. BF:Hum::confused2:

We have step down facilities still< I think.
sorry you are not on the list...this must be so disappointing.
(((((HUGS)))))
bizi
I am really sad for you.:(

Many of the Assisted Living facilities for those needing temporary care are frequently for those who may have broken a leg or some ailment needing rehab.

There are in home caregivers; but they can be expensive. Not sure Medicaid/Medicare can be of any assistance. Might be worth checking into.

Friend,

You are going to get the proper care that you need.
Try not to worry about each step.


Take care of the NOW. Deal with that.


I am grateful to hear that you are talking to the drs and learning how things
work.


M

BF,

Mari is right....

As you mentioned..."Through whatever happens the Lord will be there".


Gerry

the lecture i heard yesterday said that God is always with us and we can't understand when things happen