The whole finding a living donor proc... - Kidney Transplant...

Kidney Transplant Patient Support

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The whole finding a living donor process is a JOKE!!!

RUKIDNEYME profile image
6 Replies

What I guess aggravates me the most about being in the position that I am in, is that when you are looking for a donor it is all up to the PATIENT to find a person to donate to you and there is absolutely NOOO incentive to the donor to donate. For example, everyone in healthcare is making money off you. The doctors that you meet with to be evaluated to be a potential donor they are making money off you which I would like to let you know this process cost around 60,000 dollars, the people who do the HLA cross matching for your blood type they are making money, the surgeons are making money off the transplant surgery. You know the only person who is giving the greatest gift and I feel is not being reimbursed is the donor. Currently it is illegal to pay for someone to donate to you, but the healthcare system can get paid off the expenses of your illness and the loving gift of the donor. The whole transplant procedure would not happen if it was not FOR THE DONOR. Instead of the hospital stepping in and saying "Hey we realize you are sick so we are going to collect a pool of people that we will pay so much money for kidney and have them pre-screened and ready to roll when you are in need" but instead these hospitals push how much BETTER a living donor is and the only thing they give you are tools to help YOU find a living donor and make you do all the work of finding one. So not only do you have to try to maintain working a full-time job to keep your good insurance and have money to spend on advertising yourself for a living donor (which I have spent close to 1,000) but you also have to go to MUTIPLE universities to be listed on deceased transplant list. So currently Emory has a 3-6 year wait list for a deceased kidney unless you are on death's door you do not move to the top for this kidney. I have already went down to Medical University of South Carolina and now they are fighting to approve me, that I am still on pending status. So instead of just going to ONE university and being approved for a national database for an organ you a have to travel to MUTIPLE universities and go thru the same test which keep in mind are very expensive. So, to go to different universities you have to spend money on travel, food, lodging and gas and you ALSO have to bring a care taker with you. Meaning someone else has the burden of having to come with you and you taking a day away from them because go you being sick. My last visit to MUSC and Emory cost me a total of 500.00 dollars with having a caretaker with me. So, think about the poor people who are sitting on dialysis on limited funds and who are not good at advertising themselves or feel unsure about telling their stories because they may still be struggling with it. The hospital puts all the responsibility on these sick patients. Also, the deceased transplant is not a list at all but a POOL of people who need an organ and when some dies they look at the pool and see who the best match for this organ is and then make a list of people who are and who is the sickest and been waiting the longest. The government has control over all the organs in UNOS (United Network of Organ Sharing where the deceased pool is located) so you really have no idea where you are in terms of receiving a deceased kidney or how much longer you will be waiting. There is really no support for people with kidney disease and with so many people dying each year waiting you would think more effort/ money would be directed towards helping patients who are in need of kidney or on dialysis. Dialysis is 20-year-old medical technique and the healthcare system is telling me that they cannot figure out anything new? There are games being played and there are people out here dying and the only thing that matters in healthcare is cost. It is cheaper to make the patient find donors then having the hospital take a cut from their wallets to help sick people out. I tell you one thing if and when I get a kidney I am going to be out there hustling my butt off for my friends that are sitting on dialysis waiting for a miracle to come thru, because I have been there and trying to find hope is very hard when your doctors, hospital staff are giving you none and no help to find a donor so when someone is willing to be your voice while you’re sick it can really change the life/mental state on someone on dialysis. it is all about HOPE!!!! Which I think these doctors needs a crash course in. My doctors just said that your kidney is failing you will have to get a new one. And I am thinking to myself "Ok let me just pull that kidney out of my back pocket because it is not you that has to go out here to fight to find one"

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RUKIDNEYME
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6 Replies
sharonm271 profile image
sharonm271

Wow. That's really different to here in the UK. Thank goodness for our NHS. I'm currently going through testing to be living kidney donor and the NHS will recompense any travel/loss of earnings. They will also be matching my test results to patients ready for donation. Good Luck and hope u find someone to donate.

RUKIDNEYME profile image
RUKIDNEYME in reply to sharonm271

Another reason why US healthcare SUCKS!!!

manbreak profile image
manbreak

It shows how lucky we are to have our NHS......I have had 3 transplants 2 live donors, I have had brilliant care. They paid my last donors wages for 3 mths as his work place wouldnt......hope things work out for you.

RUKIDNEYME profile image
RUKIDNEYME in reply to manbreak

Might need to leave the US

I lean very libertarian (small "l") when it comes to organ donation. We should be able to do private transactions to incentivise living donation in the US. I don't know if healthcare funds from the government should go towards incentivising. I haven't thought that through enough. My first reaction would be "no, not at all" because the government has no money and all the funds they spend on government programs comes from taxpayers. I don't see a subsidized program to incentivise living donation as a good thing.

The current system could definitely be improved. Some people would say, "That wouldn't be fair to the poor who can't afford to "incentivise."" But the poor could have all of the current system's pool and waiting list for cadavers while still seeking their own living donor who wanted to donate "out of the kindness of their heart." I think the people who were incentivising would have to opt out of the waiting list/pool system though.

I know some college students who used to joke about "I wonder how much I could sell a kidney for?" There are already very rich people who go out of the country and buy organs for pennies of what they would be worth in a free market.

RUKIDNEYME profile image
RUKIDNEYME

I would for sure go out of the country and find a kidney but I would have to make sure their hospital is top notch. And good point out taking the people out who want to pay they could have all the deceased kidneys to themselves, while someone who is going to pay needs to opt out.

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