As I start sharing the results of the survey and my observations, I think the best way to make sure the perspectives of other donors, in particular the ones who took the time to complete the survey, are represented is to share some direct quotes submitted anonymously in response to the final open ended questions.
Down the road, I may figure out a way to incorporate them alongside the results, but for now I think it’s important to get them all in one place so that other’s can read and take what they want from them. As with any open ended feedback, the people who take the time to write in often represent the extremes. I think that’s healthy — prospective donors, recipients and advocates should hear a variety of perspectives.
In some cases I’ve split a long quote into several entries. To provide a little bit of context about where the quote is coming from, I’ve included a note about how the person rated their experience overall and whether they think they would do it again.
I was blown away by how many people took the time to write in their thoughts. There are a lot of direct quotes below. To help keep them organized, I tried to group them into rough themes:
- General Reflections and Advice
- Informed Consent
- Standardization of Care
- Support and Care After Kidney Donation
- Financial Impacts
- Long Term Outcomes
- Awareness Campaigns
General Reflections and Advice
“Donating a kidney is a bit like having a child. At first, you are really excited and can’t wait. In the middle of the surgery and hospitalization (like childbirth) you think ‘what the hell did I do?’, but you are glad to see the difference you made. In a few months you think, ‘that wasn’t so bad, I could do it again in a few years…too bad I don’t have another kidney!'” (overall experience: 5 of 5; would do it again)
“It is a life changing experience for you as a donor. The emotions you feel are amazing knowing you saved someone’s life. I know not everyone will have the same experience I had, but this is right up there with my children being born.” (overall experience: 5 of 5; would do it again)
“Don’t let your relationship with a recipient dictate your donation. If you have a secondary gain in mind through your donation, you will be disappointed. Consider the WHY of donation carefully and be mindful of the feelings of those who will support and care for you before and after. Finally, it’s major surgery and there are risks and complications which can occur. Consider carefully.” (overall experience: 5 of 5; would do it again)
“One definitely needs to consider all the pros and cons because you never know what may happen. You have to be ready for a worst case scenario, but hope for the best!” (overall experience: 4 of 5; would do it again)
“Facebook group is very helpful to donors/potential donors. Donate if you’re healthy and know the risks. Don’t expect a lot from medical people, there are caring ones and indifferent ones. You’re someone’s hero, yes, but just don’t expect donation to change your life. You’ll be back to normal soon and life will probably go on as usual. Satisfaction is personal and everyone has problems to deal with. You did a good thing and thank God you did.” (overall experience: 4 of 5; would do it again)
“I will say that it was one of the best decisions I ever made. When my sister proved to be quite difficult to match we didn’t give up and neither did our teams. We became part of a three way chain. So honestly, while I was a bit bummed that my kidney didn’t go directly to her, in this process 3 people got what they needed and it was the best way to get my beautiful sister what she needed!” (overall experience: 5 of 5; would do it again)
“bionic kidneys will replace the need for donors at some point in the future.” (overall experience: 5 of 5; would do it again)
“UK donor so some things are different here eg confidentiality – I don’t know where my kidney went and would not be able to find out unless the recipient contacted me. This doesn’t bother me at all as the person I was donating for got their kidney which is working really well but could be a problem for others.” (overall experience: 5 of 5; would do it again)
“I donated 30+ years ago, no regrets, I was happy that my recipient got an extra 12 years on my kidney before her underlying health issues (diabetes & heart disease) caught up with her. Her kidney was still working just fine when she lost her battle due to a heart attack. The transplant team was very honest with me, they told me that a transplant for my sister would not extend her life, but that it could improve the quality of her life. I was willing to accept that and was happy to keep her dialysis free for her remaining years.” (overall experience: 4 of 5; would do it again)
“Even though I’m a strong advocate for living organ donation, because it’s such an important decision, it’s very important that everyone do their research and think it through thoroughly before proceeding.” (overall experience: 5 of 5; would do it again)
“Go into it fully prepared, as complications *do* happen for some. Know whether you can live with your decision if you’re one of the unlucky ones. If all answers point to yes, then proceed. That said, it’s one of the most selfless, brave acts someone can do. And it will enrich your life knowing the sacrifice you’ve made for someone else’s life. I have no regrets!” (overall experience: 5 of 5; would do it again)
“I had a wonderful experience on many levels and if I could do it again I would. I am glad my transplant coordinator and team did a good job mentally preparing me for the entire experience. I think if that hadn’t happen, I would have had more anxiety and other issues. But any person/donor can own that – do your homework and be confident you are making a good decision for yourself.” (overall experience: 5 of 5; would do it again)
“I am an altruistic donor and two years later I met my recipient. He is an amazing human being, sadly my kidney only lasted 6 months for him. Although I did not save his life I changed his life. I would absolutely do it again.” (overall experience: 5 of 5; would do it again)
“It’s a very personal decision. There’s no shame is declining. But there are few opportunities in life to make such a beautiful gift to someone.” (overall experience: 5 of 5; would do it again)
“I think raising the age for undirected donations would be good. But, at 18 donating for a direct family member still is reasonable.” (overall experience: 4 of 5; would do it again)
“My husband was super supportive but other family members were not. I think that’s normal but I think it’s good to know that within a normally supportive group there will be dissent. The other thing to know is that for the immediate six months after, the most asked question was why? I’m 99% sure this is because I was a non-directed donor but my mom, four years later, still asks me why I did it.” (overall experience: 5 of 5; would do it again)
“Although I am honored to have donated my kidney to someone I did not know before the donation I wish I had waited to be personally involved with my recipient. I know it sounds terrible to say that but there have been requests for money and a kind of attitude as if I owe her something. I’m happy she has a healthy kidney but I should have held back on getting to know her.” (overall experience: 4 of 5; would do it again)
“My experience was very good. There were a few times during the process, I had to go off the list due to being unable to take time off from work. They were very understanding. I wish I was able to meet my recipient. I don’t know how he’s doing. The hospital never really gave me any follow up on how many people were in my chain. But my overall experience was good. My health is very good. Not sure if the weight gain is due to the donation or getting older.” (overall experience: 5 of 5; would do it again)
“I think the informed consent protocol throughout the kidney donation process should be more heavily regulated. I am highly educated (not to sound obnoxious) and I generally think that a lot of the reasons as to why I knew so much about the process was because I, and my other family members in the medical field, knew what to ask. I feel that had I not asked many of these questions, I would not have known much ahead of time and, to me, it is genuinely concerning that others may not be fully informed as they are going through the donation process.” (overall experience: 5 of 5; would do it again)
“Wasn’t warned about adrenal gland problems when the left kidney is donated. I believe the loss of this adrenal gland has resulted in long term problems with depression, fatigue, and weight gain/difficulties losing weight.” (overall experience: 5 of 5; would do it again)
“For women of child-bearing age, data about pregnancy outcomes/birth complications are largely overlooked. I would not recommend donation for a woman who has not yet has children, but plans to in the future. Kidney function is effected by pregnancy” (overall experience: 5 of 5; would do it again)
“Make sure the donor clearly understands that there is the potential that the he/she may experience renal failure after donation and have to go on dialysis or receive a transplant themselves.” (overall experience: 5 of 5; would do it again)
“I believe my poor outcome is directly related to a positive halo regarding donation. The nephrologist, who was also the nephrologist assigned to the recipients, repeatedly told me that donors ‘all do well.’ The transplant center never looked at my pre-donation history – available through my PCP – and decided that the poor pre-surgery labs were contradicted by one set of good labwork.” (overall experience: 1 of 5; would not do it again)
“Recovery is different for every donor. I believe the information given to donor should be generalized more. Recovery times quoted to me by my team were very optimistic in my case, which led to unrealistic expectations on my part.” (overall experience: 5 of 5; would do it again)
“My recovery process was long and arduous. I was told consistently, from the program and from other living donors that I would be back to normal” after a few weeks. I was not, and it made me think I was abnormal and something was wrong. Turns out, it was not unusual. Many of us have longer recovery times.
I was in perfect health before surgery, so my body was shocked by the removal of an organ. I am glad that I listened to my gut instead of doctors and the online donors, because if I had gone back to lifting and working out too soon, I certainly would have gotten a hernia. I had to wait six months for my abs to heal completely. It took a year for my creatinine to level out.
I am in good health now, but wonder what the future holds. My Mother had cancer last year, and had chemo that was so damaging to the kidneys they would flush her for 8 hours afterword. Could someone with one kidney tolerate such treatment? Will we ever know? Absolutely no legitimate follow up is done on donors. That has to change. We need to make sure people have the facts. As I have said before, I may have made the same decision, but at least it would have been an educated one.” (overall experience: 3 of 5; not sure if they would do it again)
Standardization of Care
Only 50% of 263 survey respondents who answered the question said they agree or strongly agree that there is not enough standardization in protocols and evaluation criteria across transplant centers. 42% said they neither agree or disagree — it’s hard for us know which parts of our experience are standard and which are specific to our transplant center so it’s difficult to have too strong an opinion here.
“In my talking with other donors, I have found that transplant centers and their requirements vary widely. I was lucky to have one of the top in my city.” (overall experience: 5 of 5; would do it again)
“Since donation experience varies from center to center, would like to have a way for donors to “rate my transplant center” and publish. would like to see more support for family donors; all donors are altruistic regardless of relationship. have more psychosocial support for family donation. and of course more long term follow up, perhaps even Medicare to cover donor check ups considering how much money we save them on dialysis.” (overall experience: 3 of 5; would do it again)
“I left the hospital before having a BM. Everyone knew and was ok with that. I went back a week later with severely impacted bowels and shit hasn’t been right since. It’s been 18 months.” (overall experience: 2 of 5; would not do it again)
“I was disappointed in the follow-up by the hospital. My doctor had to prompt them to gather my data.” (overall experience: 4 of 5; would do it again)
“In the UK you are given kidney checks every year. The first two years and key years such as five and ten, are with the living donor coordinators and transplant team/nephrologists and the other years are just with your GP.” (overall experience: 5 of 5; would do it again)
“The worst part of my donation was working with the coordinators and lack of communication by them.” (overall experience: 3 of 5; would do it again)
“The relationship with the Living Donor Coordinator plays a crucial part in the experience.” (overall experience: 5 of 5; would do it again)
“There should be more advice on physical preparation such as nutritional advice, probiotics, etc. Also my donor coordinator was largely MIA once I developed cdiff, and did not advocate for me well in hospital. I was also very dissatisfied with my surgeon, who dismissed many of my concerns when I developed complications.” (overall experience: 4 of 5; would do it again)
“Having been my partners advocate for 20 years in his journey with ESRD, I was well practiced at advocating for myself during my donation evaluation and surgery. The most important factor for me was that I trust my medical team, surgeon and center.” (overall experience: 5 of 5; would do it again)
“All hospitals should do paired donations, chains, and have the voucher program.” (overall experience: 5 of 5; would not do it again)
Support and Care After Kidney Donation
92% of 264 living kidney donors who answered the question said they agree or strongly agree that tracking donor health and long term outcomes should be required beyond the current two year mandate.
“Both donor and recipient mental health needs to be a bigger priority.” (overall experience: 5 of 5; would do it again)
“Seriously consider the effects of being a donor on not just your physical health but your mental health.” (overall experience: 3 of 5; would not do it again)
“Be prepared that the attention you receive from the transplant center BEFORE the donation, may not be the same AFTER the donation. If you are aware of all the risks, have a good Primary Care doctor that is supportive and family support, you should be fine.” (overall experience: 4 of 5; would do it again)
“I am very blessed that I was considered healthy enough to donate. The evaluation process went very well. Quick and thorough responses to all of my questions. Once the surgery was done, the lack of concern or even just communication was very disheartening.
I had a previous abdominal surgery so I knew to expect things that were not explained. The 1 phone call I made to my after care nurse was not returned. I waited 4 days and was able to talk with the coordinator and get answers. That makes it very hard to advocate for kidney donation, but I would volunteer again to help my daughter.” (overall experience: 5 of 5; would do it again)
“Lack of care/concern from transplant center after donation is astonishing. Also they need to address the fatigue issue instead of denying it.” (overall experience: 4 of 5; would do it again)
“Standard operations and guidelines as well as post monitoring that is not at the cost of the donor.” (overall experience: 5 of 5; would do it again)
“As a donor with complications who has been ignored by the transplant clinic and forced to go private for basic health care I am disappointed and disgusted by the transplant industry. Until every doctor and nurse and coordinator in the hospital has already donated a kidney or liver, I don’t think they should be allowed to perform the surgery on others.” (overall experience: 1 of 5; would not do it again)
“Testing for kidney function should always be covered. Donors should not have to pay for these testing.” (overall experience: 3 of 5; would do it again)
“I think there needs to be more intensive follow up. I was seen 6 weeks after my surgery, called and had labs at 6 months and called at one year!” (overall experience: 5 of 5; would do it again)
“At 8 years out, my GFR is 38-41. I have required 3 series of IV iron infusions for anemia. GI tests were normal. Recipient’s GFR is 60-70 . My donation led to 3 people getting kidneys. I did not anticipate my health deteriorating. My transplant team was indifferent..documented my issues as a “myriad of diffuse complaints.” I am on SSDI and have not been able to return to work as a nurse. Donors need more information and follow up and health care coverage.” (overall experience: 2 of 5; not sure they would do it again)
“Transplant centers often forget about the donor once the surgery is done. Getting them to respond or pay attention to inquiries was really hard. I had to often get my recipient involved!” (overall experience: 4 of 5; would do it again)
“I would do it over in a heartbeat but I feel the aftercare post op.after discharge is not very good most things that trouble you are minimized.Sometimes even after having blood pressure issues my blood pressure wasnt checked….at a few check ups” (overall experience: 5 of 5; would do it again)
“Support groups for questions of potential donors. Knowledge to donors that long term insurance may be denied” (overall experience: 5 of 5; would do it again)
“At the time of my donation there was no tracking of donor’s health after donation. 2 years is an improvement.” (overall experience: 4 of 5; would do it again)
88% of the 264 survey respondents who answered the question said they agree or strongly agree that financial support to help donors with costs associated with complications should be mandated.
“I have not tried to calculate the current losses, due to a reduced work schedule. I really do not care to know, because for me, even though I have had a very difficult time financially, it was and never will be about the money for me. In fact my brother who benefited from my donation is having financial difficulties too, so I told him to keep any and all proceeds from his ‘Go Fund Me’ account. Lucky for me, my husband has a new and much better paid job, Karma? I think maybe, yes!!!” (overall experience: 5 of 5; would do it again)
“Would like to see the tax benefits of donating to be standard across all states.” (overall experience: 5 of 5; would do it again)
“The donation cost me my health, careers, and financial security. I also found out there is no help for damaged donors. I’m fighting for my life now. My dreams and plans that my husband and I had will not happen unless God does a miracle. I can handle this because I loved my niece and wanted her to live. I’m not sure how I’d feel if I had donated to a stranger and ended up this sick and broke.” (overall experience: 1 of 5; would do it again)
“It was a profound experience that was very empowering to me. While I would choose to do it again in a heartbeat, I am concerned about the limited follow-up given to donors. I am also concerned about the limited financial support during the recovery period.
I work at an occupation where I had to take 12 weeks of unpaid leave. In preparation for the lost wages, I had to save for months before the transplant to cover the lost wages from work. While I was happy to do this for my husband, it did impose a financial hardship on our family.
I hope legislators will take note of such concerns, since in the long run, I have helped to defray the costs associated with dialysis therapy for him. Thank you for conducting this survey.” (overall experience: skipped; would do it again)
“This was the very best thing I have ever done in my whole life! I wish more people understood the process, i think more people would donate, especially if they had job security after and maybe some financial support.” (overall experience: 5 of 5; would do it again)
“I had an excellent experience. My donation happened in January and lot of my financial concerns were covered by a grant from the federal government (nhhs) that the transplant center helped to get. The funds are not always available due to first come/first served protocol. As a voluntary donor, funds should not be a big concern. I was lucky that the funds were available or it would have made a financial strain on my family, but I still would have done it!” (overall experience: 5 of 5; would do it again)
Long Term Outcomes
“Thank you for making this survey! My biggest concern prior to surgery was there not being enough research out there about outcomes after surgery. I’m happy to take part in it!” (overall experience: 5 of 5; would do it again)
“That last question about ‘unknowns with living donation’ isn’t true. There are a couple of long term significant studies. The U of Minn released the first of its kind back around 2008. It even included information for women donating who would later become pregnant and start a family. All the results were good. Maybe the widespread knowledge is the problem – word isn’t getting out.” (overall experience: 5 of 5; would do it again)
“Thanks for doing this survey. I think it’s really important to gather long term outcome data to be able to better advise younger donors. I worry a lot about younger donors who have no idea what chronic diseases they might develop in middle age. I think there’s a huge difference between a 22 year old who wants to donate to a sibling vs. a non-directed 22 year-old donor. Risk vs. Benefit” (overall experience: 5 of 5; would do it again)
“I think that there should be more research into how kidney donation affects the menstrual cycle including endometriosis.” (overall experience: 5 of 5; would do it again)
“I think Living Donation is something that should be talked about more…so many people ask us what a Living Donor is, because they thought that you could only donate after you had died. Many had out it on their drivers license, but didn’t realize until we talked to them that they could do it now. I think ‘Donate Life’ should be campaign that, while you can designate it on your license that you can donate some organs now while you are still alive.” (overall experience: 5 of 5; would do it again)
“God gave us two kidneys for a reason. If a Person is in excellent health, He or She should know that the saving of a life is like saving the World.” (overall experience: 5 of 5; would do it again)
“Complications should be taken seriously. All you ever hear is share your spare. Was told that I would have no changes in diet. After surgery I was told to have a low protein diet. So that was a huge diet change. More research needs to be done on the causes of fatigue after donation.” (overall experience: 4 of 5; would do it again)
“It is the most rewarding and amazing journey of my life. Share a spare!!!!” (overall experience: 5 of 5; would do it again)
“Understand that there will be consequences…your kidney is NOT just a spare!” (overall experience: skipped question; would do it again)
“There is not enough evidence based research that proves a person has “a spare kidney”. It is wrong for any clinic or organization to advertise to get living donors unless they are willing to take care of the donor who has complications the rest of their life.” (overall experience: 1 of 5; would do it again)
“This is the best thing in my life that I was able to do. I encourage everyone to become a donor if they can. No regrets for me!” (overall experience: 5 of 5; would do it again)
“One doesn’t often have the opportunity to save a life. It is worthwhile to consider living kidney donation.” (overall experience: 5 of 5; would do it again)
“Do it! You’re saving a life!” (overall experience: 5 of 5; would do it again)
“More people should become living Donors! But need the education to know the difference between living and after death donations” (overall experience: 5 of 5; would do it again)
“I no longer support living donation. The nephrologist in my hometown looked at my labs and then said, ‘Those guys at [the transplant center] are really smart. You will be fine.’ and he patted my hand. The care I received due to my poor kidney function has been so bad, I cannot recommend anyone else repeat this experience. First, do no harm.” (overall experience: 1 of 5; would not do it again)
A few people wrote in to give me direct feedback on the survey itself, to request a copy of the final report, and to simply say thank you. I took it all to heart. So many living kidney donors are hungry for better information and for their stories to be heard.
I’ve done and will continue to do my best to call out the specific issues with some my word choice and variations in how a question might be interpreted. I knew it wouldn’t be perfect but I also believed it will be helpful. I hope I was right.