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Kidney donation

VoidCat

Pronouns: he/they/it/neopronouns
Imma use this thread to document my process of going through kidney donation. This is to inform folk on what being a living donor is like and what the process is. The pros and cons. So if anyone here wanted to go through it or know someone who wants to be a living donor can know what they getting into. Keepin mind im in the early stages...i have yet to be approved for donating a kidney. Im also a nondirected kidney donor not a directed one. Meaning i would be donating to a stranger I dont have anyone in mind to donate to. That is good to keep in mind here. Things may be different if you are donating to a family member or friend. Im also in the US. Process may be different elsewhere. I also am documenting so folk know how im feeling and how the process is going.

Alright so first i weighed the pros and cons. Cons obviously it's a surgery. There's medical risks. A small chance like .007% of dying. It's a very slim chance but it's a risk. You could get a hernia. Hernias are easy to repair but complications do happen. Mostly I gathered the medical risks were miniumal. Now about the emotional risks...its rough. You are giving a body part away. You can get depressed. The recipent may regret the transplant and is not grateful for it. It's a roller coaster of emotions and you'll likely need therapy during. I will lose work time and be recovering from surgery. You may get illegally fired and need a lawyer. You wont be able to donate to a family member if you donate to to a stranger if they need a kidney later on. Travel costs if you have to travel. If you are a parent(im not one) you'd have to find childcare(there are programs to cover this for kidney donors however). If you are one to travel...you cant go on an airplane for a week after. If you are planning a pregnancy dont try for it until a year after surgery if you the one getting pregnant.

What are the pros? Well a living donor kidney lasts years longer then one from a deceased donor. It starts working immediately too a kidney from a deceased donor might not. Living donors also typically live longer and report a higher quality of life then those who don't donate(this may be due to selection bias however not the donation itself. As only the healthiest people can donate a kidney they test you for everything). The regret for donating is low. I'll be extending a life. As I said complications are rare. You get top priority for a new kidney if yours were to fail. There's also no upper age limit.

Often you can get reimbursed by a program for any work time missed. The program im going through has a lot of protections in place. Take a look here of how they deal with the cons and try to offset them a bit...the program is called a family voucher program. This program is for folk who donate to strangers but there are programs availible to folk who donate to family. Also the recipents insurance covers donation on the donors end at least in the US
Screenshot_2024-01-02-16-17-53~2.png
More details on ways the cons are offset here:
 
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VoidCat

Pronouns: he/they/it/neopronouns
Now the next step after weighing pros and cons(there are probably more but thats what i thought of to put at this time)... if you decide to what's the next step? Well. I messaged my doc asking if any the meds im on can damage the kidneys. He said no. So i then went online filled a form out for prescreening through the national kidney registry. I passed it. I then filled out my medical and social history. After that I will be doing preworkup labs. That's the part im on now. If I am eligible regarding them the next step is choosing a transplant center. Then I'll be contacting them and going from there.
 
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VoidCat

Pronouns: he/they/it/neopronouns
Another risk and for me this was a big one. You may not be eligible. For me I really want to do this. It'll hurt if im unable to.


Now I think im done writing for now.
 

Evangelicalhumanist

"Truth" isn't a thing...
Premium Member
One of my (many) nieces had a kidney transplat just over a year ago, said kidney being donated by her cousin, another niece of mine. Her quality of life has improved so much, and she has a good chance of reaching a decent old age.

Just to say, I know how important such a choice is. You will help someone with a very, very precious gift, and it doesn't matter a bit whether you know them or not.
 

ChristineM

"Be strong", I whispered to my coffee.
Premium Member
Another risk and for me this was a big one. You may not be eligible. For me I really want to do this. It'll hurt if im unable to.


Now I think im done writing for now.

I do hope you are able to donate, it's a wonderful thing you are going through.
 

VoidCat

Pronouns: he/they/it/neopronouns
Oh! Here in the US they are able to do some your labs at home or at work. So right now im waiting for my lab thing to get here. Then a people stabber person will be calling me in a few days to make an appointment to go to my house or at my work to draw blood and collect urine. That's what is required for prelabs. Hang on I'll post what they look for in prelabs
 

VoidCat

Pronouns: he/they/it/neopronouns
Another thing to point out...

I have a family member and their husband who have offered to let me stay at their house while i recover for 2 to 6 weeks. Said family member is a nephrology nurse. She's also offered to drive me to and from appointments if needed and wants to help as much as possible.
 

VoidCat

Pronouns: he/they/it/neopronouns
One of my (many) nieces had a kidney transplat just over a year ago, said kidney being donated by her cousin, another niece of mine. Her quality of life has improved so much, and she has a good chance of reaching a decent old age.

Just to say, I know how important such a choice is. You will help someone with a very, very precious gift, and it doesn't matter a bit whether you know them or not.
It is an important choice. I wish your nieces well
 

VoidCat

Pronouns: he/they/it/neopronouns
This is the lab kit instructions...has yet to arrive supposed to arrive one to two days
Screenshot_2024-01-03-12-51-16.png
Screenshot_2024-01-03-12-51-19.png
 

VoidCat

Pronouns: he/they/it/neopronouns
Looks like ill have to hold on labs. Another resident here tested positive for covid. Im negative but best to wait in case I catch it. I have yet to receive the lab but ill have to discuss with the lady who'll call me tomorrow asking if it's here yet about how long to wait till we do labs.
 

VoidCat

Pronouns: he/they/it/neopronouns
Prework up lab kit has arrived. Just now need to wait for them to call tomorrow to set up the appointment and explain that they may have to wait cuz of the resident with covid but the lab kit is here
 

VoidCat

Pronouns: he/they/it/neopronouns
I just realized two things....i forgot to check with the group home manager if it was ok to donate a kidney and i forgot to send her a copy of the lab orders. So i sent an email with the following message and an attachment of lab orders...

This is Ray. Ive started the process to do nondirected kidney donation. I figured since I was allowed to attempt to do bone marrow tho that failed cuz i accidently gave wrong information that deemed me ineligible this should be allowed. This is the documentation of the lab orders. I figured youd need them. The prework up lab kit has already arrived. A phlebotomist will be calling me to set up an appointment to come to the group home to take blood and urine. After they take the blood and urine the next step will be to find a transplant center. This process can take months to determine if eligible this is just the start and ive already spent months researching and reading about it to be as informed as possible. It's not a decision I made lightly. A relative has offered to let me stay at her house to recover after surgery and has offered to take me to appointments if staff is unable to. Even has offered to take me to the surgery center. She is a nephrology nurse so has informed me a lot about the process. Staff will not have to worry about if I need to go out of state as many centers have an option to donate in the NC state and the kidney will be transported out of state.
 

VoidCat

Pronouns: he/they/it/neopronouns
Regarding the phone call...they have not called today perhaps they will next week.

Hopefully I'd be eligible to donate i wasnt regarding bone marrow. If not it'll likely be because I'm in a group home or because im on ssi. In which case I can wait till I move out and get off ssi to donate

I thought the bone marrow disqualification was because I told them I was on SSI due to depression. But i called them today on request of my grandma to be sure if that was the reason. In reality it was because im on SSI period not because I'm depressed and on it. Kidney donation has different rules then bone marrow so we will see.
 

VoidCat

Pronouns: he/they/it/neopronouns
They have assigned me a donor mentor. I just got off the phone with them. She pointed out about the tests they do regarding matching and health is not only to make sure you are healthy enough but to make sure you are low risk enough to not need one later on in life.

She also pointed out at any time I can back out.
 

VoidCat

Pronouns: he/they/it/neopronouns
They have assigned me a donor mentor. I just got off the phone with them. She pointed out about the tests they do regarding matching and health is not only to make sure you are healthy enough but to make sure you are low risk enough to not need one later on in life.

She also pointed out at any time I can back out.


Regarding me being in a group home and on SSI she said she didnt know if it's a problem or not because of how different transplant centers are. She did say with how independent I am I should be ok but that She dont know. She was surprised to find out that I was considered as a potiental match with bone marrow. Said its easier to find matches with kidneys and that it's really rare finding a match with bone marrow.
 

VoidCat

Pronouns: he/they/it/neopronouns
The scheduler person called me. I told them that i have the pre workup lab kit and that they'd need to delay scheduling cuz of two residents having covid. They now have me on a two week hold.
 
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