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 process... - Kidney Transplant
You are 100% right.
You can call your transplant center/coordinator where you are registered and ask where you are on the cadaver list? Ask how long people on the transplant list, with your blood type, had to wait in 2017?
My transplant was 18 years ago, but I had called and asked those very questions. Found out I was at the point where patients with my blood type were getting transplants the year before. I am not kidding, I got the call for my transplant 2 weeks later.
I think you are wrong about being a POOL. A center in your state gets first "dibs" on cadaver organs from that state. You can be put on the transplant list when in CKD and are moved up on the list when you start dialysis. The whole idea of being multiple listed at more than one transplant center is to increase your chances for a cadaver transplant. Different centers receive their organs from different medical centers - even those in the same state.
I would like let let everyone know that the term cadaver is not used anymore it is “Deceased”. I learned the hard way I was lecturing on transplants and used the term cadaver. After the lecture a lady came to me and said that she was offened that I had used Cadavar and told me I should use Deceased. She was the mother of a 17 year old boy who drowned. She donated his organs and 16 people benefitted. I was stunned and told her I would never use the term again. Just information for everyone to learn from. I learned my lesson and it still haunts me. I was transplanted 31 years and trust me feelings of others are of paramount importance.
I called the UNOS and talked to the representative for them about how the deceased transplant works.
I didn't mean for you to call UNOS, but your local transplant center where you are listed. I lived in WI when I had ckd and was listed at a transplant center in Milwaukee and one at U of WI Madison. I called those centers to see where I was on the list and wait time. Both had told me pretty much the same thing.....that if it was the year before I would be getting my transplant soon. 2 weeks later I got the call from UW,
When I asked the deceased coordinator were I was on the list and how I could check she said "O, it does not work like a list people just call it a list" so I called UNOS and asked them how it worked. Well atlleast your story gives me hope but I am trying to get this transplant pre-emptive to avoid being back on dialysis
Geez, (nice username tho) that sounds beyond rough. I guess I consider myself lucky that I have a living donor to donate to me. (That would be my mother). I can kinda see that this whole procedure would be a pain in ass when it’s just you.
Another thing, when tou do get your transplant, they monitor you for a very long time to the age of 21 (with UCLA they do)
I understand your frustration, but there are some things to consider. If people were to pay for a kidney it leaves people with less access to money to “purchase” a kidney. If you want the hospital to help in locating and paying for kidney, that creates more cost for us the patients. It’s hard to suggest purchasing a kidney when complaining about poor people on dialysis not having funds. Hospitals are not in the business of supporting you and finding you a living donor, that is the job of the patient. The hospital doesn’t know your friend, family situation and their time is devoted to patient management not hitting the streets to find a kidney. At some hospitals I’ve gone to have been lucky enough to have altruistic donors. I’ve also met people that don’t want to ask, are afraid to ask, and even people that have asked and had people get tested while they themselves have not gotten tested to see if friends willing to donate are a match. The other problem with kidney disease is when friends and family see you out they don’t consider you sick. For two years, almost every three months I sent an email to everyone I knew to please get tested. It wasn’t until friends of ours (that had received that email many times before) asked my wife how I was at a 4th of July picnic. She told them this is the best you’re seeing him since he wants to be here and he’s doing a lot of faking. It wasn’t until that conversation that they understood the severity, and both got tested (my best friend and his wife). His wife ended up being my donor. Now if that conversation never happened, my friends would see me as “normal” since I put on a show a lot so people didn’t see me as sick and I didn’t want to be seen as sick. I think this dichotomy makes it hard for those you ask understand the severity. You as a person in need doesn’t want to come across as being in need by pretending to be normal, and your friends see you as normal because they don’t want to see you as sick. Therefore people don’t consider getting tested earlier. I agree the cost of healthcare is ridiculous, but the cost isn’t just to pay doctors, some hospitals do research, there is the cost of training, upkeep of devices, purchasing of devices, and maintaining and expanding their facilities to accommodate growing populations. Granted there is a financial incentive to have people on dialysis for companies such as DaVita, but I would disagree with you that “games” are being played. America needs to consider the model of organ donation like European countries where everyone is a donor, you don’t get to choose. That would increase the deceased donor pool. Unfortunately that will never happen since we as Americans are too deeply rooted in “you can’t tell me what to do”, no matter how much it’s for the greater good. To also say there is no research is incorrect. Prograf is the gold standard in immunosuppressant medicine, but a newer drug is out due to research. While availability of this drug is ramping up, it doesn’t damage the kidney while protecting it from your own immune system. There is also research and testing of a bionic, implantable kidney. meddeviceonline.com/doc/upd...
I’m sure you will also see stem cell research in the future to grow a kidney from your own cells to get people off immunosuppressants. You can also ask while you wait where you are in the process. As I mentioned earlier, I understand your frustration as I was there, and I’m not going to make assumptions of what you’ve done outside of what you mentioned, but we have to take ownership of our care. That means being a pest to your transplant coordinator. When a transplant coordinator is assigned 300+ patients, as in the case at my hospital, you have to call and email them religiously. It may not be the best system, but it’s the system we have. If people think well they need more pre and post transplant nurses, that will cost money. I truly wish you the best, and I hope you find a living donor. I hope you don’t take this as being harsh, and please know I’m pulling for you.
No, I understand what you are saying this is my second kidney transplant and I have been left in the dark about my care so many times that I have to basically become a *icth at the transplant center because no one will tell me what is going on about my care. Since, I become such a *icth they have set more evaluations for me to complete to become listed as a deceased donor, example now MUSC has made it a requirement that I have to see a psychiatrist for anxiety before I can be approved for the deceased transplant list although this is my second transplant and I had the first and still do for 19 years. The universities know you need this organ and they can set any obstacles that want you to complete to get it regardless of cost to you. I have been so involved in my care and have caught so many mistakes from MUSC it has back fired in my face that MUSC has labeled me as a difficult patient. And the new drug Belacept I know is out and I am ready to become a patient on it at Emory. I was approved for their deceased transplant list with no problem but this drug is currently on back order.
Sorry to hear that your care takers don’t provide you with answers. That shouldn’t be the case.
Also, with getting money involed with donation if there was a legal contrat binding these people thru money then people could not back out last minute. Right, now I feel that the sick is basically asking for a miracle from people who never even had a tooth pulled. Why would someone want to donate a kidney with all the risks involved FOR NOTHING? I can see family members but strangers want incentives
I understand your frustration. Finding a living donor is very stressful. I had four people that were a match for me. My sister went forward with the testing but was knocked out pretty early on due to borderline HBP and pre-diabetes. Two other people just chose to not move forward after finding out they were a match. The fourth one did all the testing was approved but just stopped at that point. A friend of mine did not have my blood type but was willing to go into the swap program but she was also knocked out due to borderline HBP. I multi-listed as well and received a deceased kidney at UVMC in 3 years and 9 months. I was told Boston would be 7-8 years. My husband and I lived in a hotel in Burlington, VT for seven weeks fortunately we were able to do that but I know not everyone can.
Colorado just passed legislation that will allow for paid leave for employees who want to be living donors so perhaps other states will follow. It's not much but it is something.
There is a book I read a while ago that you may be interested in; Kidney Sellers: A Journey of Discovery in Iran by Sigrid Fry-Revere. Controversial but an interesting read.
You are correct with many of your points. —- But as difficult as it is, you have to work with what you got and in doing so introduce/influence change to “the system” as it stands now. I am a caregiver for my son, now 28 years old and just about 2 1/2 years post transplant. I found him a living non-related donor who resides in a different state. My son was a student athlete on the Penn State baseball team. Just 2 weeks after he graduated he became extremely ill with high blood pressure. Totally unexplained and to this day we don’t know what caused it to go so high and destroy both kidneys so fast. He was 22 years old then. From May to October he went from stage 0 to stage 5 and by December that year began dialysis. It took 2 1/2 years on dialysis by the time I found a donor for him. It was harder than hard. I would like very much to share with you how “WE” did it. One person cannot do it alone. If you message me on Facebook with your email address I can give you the details and steps that led to our success in finding a donor. You can find me there as Roberta Reed, Wexford PA. I really do want to help you. All you need to do is ask.
MindShift: From Victim to Warrior
While no one would argue that this process is challenging and takes a lot of hard work, that's what makes the gift-of-life so gosh darn deserving! When we take ownership of our disease and find the courage (and will) to fight for our best life possible, we not only help ourselves, we also help our fellow kidney patients standing beside us and behind us.
The key to finding potential donors comes from impassioned communications and a desire to help all those in need. As we highlight the great need of our nation and the extraordinary "living" opportunity to improve and prolong lives, humanitarian heartstrings become more palpable.
Our communications need to focus on educating the general public to learn more and do more. The first step is to invite an army of advocates to share our stories and invite others to do the same. Education is power, and when individuals take a deeper dive into learning more about this process, testing curiosities increase exponentially.
If you want to shift your fate, you'll need to shift your perspective first. Remember, all good things flow through love and gratitude. Despite how unfair this process can seem, take a leap inside a brighter and wider field-of-view.
You are not a victim here. You are a warrior fighting in one of the biggest fights of your life. It's time to take back the wheel on this journey. It's time to dismantle the wall between your heart and the hearts of your potential donors who await you. It's time to let the good stuff flow.
I am educating, I am educating my followers everywhere what a unfair process this is and there is no good about being in this situation for the SECOND time. How is there love and gratitude for system that the end of the day really does not care about you. What is the first question that is asked when you see a doctor " What type of insurance do you have?" there is no love and gratitude without money in this world. I am a warrior to get the word out about how unfairly CKD patients are treated and how so much money goes to other causes and I feel kidney disease is left in the dark.
The Big Ask. The Big Give.
I received my transplant from a deceased donor, so I do not have experience with finding a living donor. But the National Kidney Foundation has a campaign called The Big Ask/The Big Give. kidney.org/transplantation/...
In addition to providing videos where living donors and kidney recipients tell their stories, the website offers resources with tips on how to go about finding a living donor. One fact sheet is titled "How to Make the Big Ask." kidney.org/transplantation/...
The National Kidney Foundation is also working to promote legislation that protects kidney donor from issues like job discrimination and refusal of insurance coverage.
I am sorry to hear about all the hassles you are going through. I hope you find a suitable donor soon. Stay strong!
Hi. I am one of the people featured in the Big Ask Big Give campaign. I designed/contributed several components to the program. You should check with the NKK Cares Hotline (toll free) and ask if this program is being delivered any where near where you live. It was rolled our throughout the country a few months ago. Here in Pittsburgh, the UPMC Hospital Transplantcenter brought the NKF in to present it to kidney patients and their caregivers about 2 months ago. It was received well and a lot of people attended. That was the first time I saw the program in its entirety and I also was a presenter.
I understand. You know what is upsetting me? My fiance has had six potential donors evaluated and every single one was denied, including me. The latest denial was a tiny little thing and I dont understand it. I am demanding answers. My fiance feels like its all about the money because he has been on dialysis one year and they make lots of $$ off him. Does each kidney transplant center do the same evaluation? They told him that he could try again in 6 months. Due to privacy, I wont say what the reason is they denied the potential donor. OH MY GOSH! Can one complain to the NKF or can one complain to anyone about this? IT's extortion and they have the power to accept or deny the donors. Does anyone know what percentage are actually approved to donate?
Yes each transplant center does the same evaluation process because they are the assuming the resonsibility of your health. It is stupid you have to go to mutiple centers for the same tests. I asked MUSC if they could use Emory's lab results so I would not have to fill up 12 vials again and they said no. Of course they said no they want to bill you insurance and get the money.I know with the living donor side they inform them on everything and all the risk but I feel like they almost are working against the donors you send their way. If there was a legal contract with these donors and they agreed with a lawyer then they could not back out last min.
I was told to expect a wait of 7-10 years (common blood type) and had multiple potential donors ( family and friends) getting checked when i got "the call" from Mayo that they had the perfect deceased donor match within a year of getting approved. It is not a "list" where you move steadily to the top, you are right. The match quality, ages, length of time waiting, stage of disease etc. factor . In my case the match was so close that I was first offer despite it being from a much younger person and my relatively short wait. The centers want success, for their patients foremost. Fewer rejections should help make the wait shorter for all, as good matches that last translates to a need for fewer transplants. I certainly hope its the only one I need. As I understand it theres no advantage to listing at more thna one place in the same region, and listing in more regions you have to be sure you could get there quicly enough.
You are right, it is hard. You don't know how long you will wait, but in cases like mine that turned out to mean it was much shorter wait than expected. That could happen for you too. Good luck
Thank you so much those are very good words of encouragement
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