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"
The whole finding a living donor proc... - Power2Save Transp...
Power2Save Transplant Community
The whole finding a living donor process is a JOKE!!!
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We are sorry to hear about your frustrations and I apologize for my delayed response. Everyone on this forum has had different experiences - some positive and unfortunately, some negative. We agree the system isn't perfect and in many cases unfair. However, paying someone for their organ could pose some ethical problems as well. You are right in that it is illegal to pay someone for their kidney, but in your messaging to recruit a living donor, you may wish to take that opportunity to educate them on the process. One resource you could use to help you during the process of educating a potential living donor is the new toolkit the AST (American Society of Transplantation) created for that specific purpose. You can access that here: livedonortoolkit.com/. It includes information regarding the medical and financial aspects of living donation.
The current system is not perfect, but know that transplant professionals and others are working to address these concerns. There is current legislation on Capitol Hill meant to address removal of financial disincentives to living donation, the Living Donor Protection Act. You can find more information about that here: congress.gov/bill/115th-con.... A number of transplant professional groups and transplant advocacy organizations are working hard to build support for this bill to hopefully get it passed in Congress and into law.
If I can provide further assistance or information, please don't to hesitate to email me directly at: rmassi@myast.org
Warmest regards and best wishes,
Rae Massi
I see that the bill helps living donors to not be discriminated against when dealing insurance companies and it also allows them to have a leave of absence, but what is the real incentive for a person to want to step up and donate? Why is there not a tax break for people who donate their kidneys or why is there not free or reduced insurance offered to people who decide to donate. All I am saying is us transplant/ dialysis patients are fighting a up hill battle when trying to find people to donate. Us sick patients are basically turning to the public and asking for a miracle with no incentive to offer on our part, and in the real skim of things everyone is a making a profit off this donor. No one wants to take a cut out of their pocket but the donor is expected to take the fill "cut" physically, emotionally and financially.