Lying on the operating table, my naked body is covered with a white sheet. I’m startled when the surgeon approaches me, flips up the sheet, grabs the black Sharpie out of his white coat pocket and signs his name in cursive on my left side. I can smell the stink of the marker, feel the cold tip, and wince from the firm pressure into my soft belly. The chemical smells of the marker and the pre-op room fill my nose. At this point I realize that things are totally out of my control. I am marked for life. Will I come out of this alive and save my Stanley’s life? And as I start to count backward from 100, the blinding, radiant light of the operating room lamp takes me into the unknown.
———————————————————————————————————————
Living kidney donation is a common form of medical remediation. Since 1954, there have been over 75,000 living donors. Today over 6,000 people a year are living organ donors. A former work colleague suffered from diabetes and his kidneys failed in 2002. Years before I had joked with him about giving him a kidney if he ever needed one, now I made a serious offer to give him one of my healthy kidneys. After many heart to heart conversations, he accepted my offer to be tested, though not believing that we were compatible as he’s Native American and I’m from Swedish and Austrian descent. After careful screening through the transplant center, it was determined we were a good match. Transplantation surgeries were scheduled for December, 2003. I researched everything available on transplantation.
The medical websites and blogs all offered rosy outcomes for the recipients. The publicized donor risks were blood clots, pneumonia, and rare cases of deaths. One doctor mentioned depression after voluntary nephrectomy. There was a paucity of literature about living kidney donors’ experiences. On the day before surgery, we completed our pre-admission medical exams. Unfortunately, that evening the transplantation was cancelled because my recipient had heart blockage. It was the biggest disappointment of our lives. The medical team was blunt. With my recipient’s poor circulation, he would have rejected the kidney or died during surgery. I was in silent shock, then bawling. Despite attempts to comfort and calm me, I was furious and scared. The stress had ramifications on us and our families. Going back to dialysis was horrible for my recipient. Thankfully, he had a successful angioplasty. We prayed for good health for the transplantation.
Finally, in March, 2004, we received a new surgery date. My recipient offered to let me back out of this, but I was going to give him a healthy kidney. Finally, on April 28, 2004, the transplantation was a success! In the hospital, as my body awareness returned, my left thigh was numb and cold with uncontrollable muscle spasms and shooting pain. Told that numbness was normal for six months after surgery, I awaited a return to normal sensations. I was depressed, in pain, confused, and left with a terrible sense of loss. Anti-depressants were the “cure.” After six months, nothing was back to normal. At my next medical exam, it was disclosed that several of this hospital’s 70 laparoscopic kidney donors had postoperative nerve pain. My tests revealed femoral nerve damage, neuropathy, and paresthesias.
My life changed so much I shifted my academic research to organ donation. Unfortunately, there were no long-term studies of living kidney donors. I interviewed 12 other living donors. Most had never met or talked to another living kidney donor. Though these donors did not regret their donation, they all had unexpected emotional, social, cultural, and family challenges afterwards, including depression and post-surgical areas of numbness. I didn’t realize the voluntary donation would cause medical trauma to my body and spirit. My health deteriorated. My left leg continues to be numb and painful. I am divorced. My blood pressure was becoming too high so now I’m on medication.
And in 2008, I was classified as having Stage II: Chronic Kidney Disease, so I’m potentially at risk for kidney failure in the future. It was my personal choice to help my recipient. Notwithstanding, his life is still in an hourglass with the sand’s visibility funneling down and out of the top glass bubble. We tipped the timer over to improve and extend his life, but we didn’t cure his diabetes. Maybe for some people it was possible to detach from their donated organs, mentally and physically, however, for me I can’t detach from the relationships with the person who received my kidney. We connected emotionally and physically through the kidney and our experiences.
However, even with that said, I have further healing to complete from the phenomenon of being a living kidney donor. By allowing a invasion to my healthy body to take a healthy kidney for my friend, many old wounds were opened as well. They permeated my consciousness and festered until I had to embrace physical and emotional healing strategies for all my traumas, past and present. Today it is very hard to go back and analyze what happened several years ago. All the emotions flood my memory. Some might even call it posttraumatic stress.
The hopes, fears, disappointment, high stress, optimism, and pain. It was a difficult pathway for me with a very steep learning curve; I tried to understand the medical world of kidney transplantation. And I had to save my friend’s life. There are always two sides to living kidney transplantation. I don’t regret my decision to donate. How can you regret saving someone’s life? I rejoice every time I see my recipient. His quality of life has significantly improved these past five years as he is back to working and traveling. He was able to participate in his grandmother’s 100th birthday celebration. A couple years ago his son got married and now my recipient has a precious grandson. Living donors can help others who face challenges, before, during, and after donation. Empathetic health care professionals, trained in all the unique elements of living kidney donation, can also support the social, emotional, and physical needs of living donors. Individuals, and their families, who face the unique phenomenon of living kidney donation, desire and deserve diligent physical and emotional care, before, during, and after donation.
The disenfranchisement of living kidney donors could be reduced with new and refined care practices as recommend by other living donors. Stated risks from living donation now include kidney failure, hypertension, and negative psychological consequences. I’m working as an advocate to ensure that living kidney donors receive diligent and comprehensive mental health and medical care. Life is very precious and should be lived to the fullest with no regrets. This is my view from the other side of living donation.
Prescott College faculty member, Vicky Young, Ph.D., serves on the Navajo Nation Teacher Education Consortium and completed a project with the Indonesian Ministry of Education. As a social change agent, she donated her kidney in 2004. She serves on the United Network for Organ Sharing Living Donor Committee.
I had no idea that donating an organ could have such long term effects. I have never heard the donors side of the operation. It was always portrayed as having no real effect on the donor.
Very eye opening, thank you for the insight.
Janet
Wow, I agree. Very eye-opening. I never knew organ donors could deal with anything like this either. My question throughout was if she regretted the decision. It’s nice that she didn’t. It was obviously meant to be. Although there were so many negative impacts on Vicky and her life, her life probably would have taken such a different path, as this experience seems to have lead her to much of what she does now, including raising awareness like this. Thanks for this post.
Vicky,
As a fellow kidney donor, I appreciate that you are telling your story and joining us other advocates to make it better for all living donors.
Donna
Thanks Vicky for being brave enough to tell the world your story. Hopefully it will inspire other living donors to do the same.
As for ‘regret’; what an unfair question. Despite any and all negative consequences, how can one regret caring about another person so much they want to extend their life? However, that doesn’t minimize what happened to Vicky or any other living donor. In fact, it makes these sorts of stories even more tragic.
You are an angel – and an intelligent one. Thank you for sharing this information.
I, too, am one of many who consider organ donation an excellent idea, but treat it very cavallierly…I mean, what can happen to us? We’re the healthy ones! I guess not. Thank you for this essay and the chance to make a much more informed decision should I ever have to.
Erica
I had never thought about health issues for living donors, and I am sorry.
This is because a major part of my life has been blessed with a donated kidney.
My best friend’s son (who is my son’s best friend) is alive today because of a donated kidney. The donor was a road traffic accident victim and we are all eternally grateful to his family.
You made me cry. What an amazing, strong person you are! The world needs more people like you. I’m so glad you get satisfaction from knowing that your recipient is happier because of your choice. I’m inspired after reading this- thank you for writing it.
[…] Vicky posted this photo on her blog, then she begins with these creative words of a short story: “Lying on the operating table, my naked body is covered with a white sheet. I’m startled when the surgeon approaches me, flips up the sheet, grabs the black Sharpie out of his white coat pocket and signs his name in cursive on my left side. I can smell the stink of the marker, feel the cold tip, and wince from the firm pressure into my soft belly. The chemical smells of the marker and the pre-op room fill my nose. At this point I realize that things are totally out of my control. I am marked for life. Will I come out of this alive and save my Stanley’s life? And as I start to count backward from 100, the blinding, radiant light of the operating room lamp takes me into the unknown.” To read the story’s ending, go here. […]
You made quite a sacrifice. I hope it works out for you.
Wow, this was very interesting! I’ve never thought about it from this prespective. I am almost speechless, thank you for your story and for the helpful information.
I never knew the affects being a living donor could have…You should write a book on your experience. It is a very heartbreaking and uplifting story at the same time. It is a story that needs to be told in even greater detail that will allow for even greater awareness. The journey you have been through as a result of your brave act fills me with a strong sense of respect for you. It is the definition of selfless. Honestly…you need to write a book…I will be the first to buy it!! You have the synopsis down already. Thank you for the story…
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I’m so glad that you are doing something to connect other live kidney donors. Those of us who haven’t had the opportunity to be kidney donors just ‘have no clue’ – and it sounds like even those who do decide to become kidney donors aren’t given full disclosure, either. It reminds me of childbirth – if we knew what we were really in for – from pregnancy, to birth, and all those years afterwards – many women would probably just not go through with it. We never ‘regret’ having our children (ok, there are times…. ). So – just like those who have donated their organs – they don’t really, truly, regret it …
As Cristy says above – it doesn’t minimize what happened to Vicky or any other living donor – and it does make the stories more tragic – because ultimately even tho all concerned benefit (Vicky was able to have her friend around for many more years than was expected, and he got to see his son get married, and a precious grandchild be brought into the world) – there were/are serious medical issues that have to be dealt with.
And yet – they still wouldn’t change a thing 🙂 That’s the beauty of friendship.
And now, what of the Stage II Chronic Kidney Disease? Is this something that happens eventually to all kidney donors because their own kidney has to work twice as hard? I would be interested in finding more articles on the subject – for my own personal knowledge.
I had no idea of the after effects of donating an organ. Thank you for sharing your experience and informing the world.
Thank you for the Honesty…
Thank you for Sharing…
Thank you for the Empowering Knowledge…
Now it’s our turn to educate ourselves and others…
i had no idea the effects of diabetes
wow never even thought of this. So thankful that you shared this and are bringing it to light. And congrats on being a donor… what a very selfless act.
I believe that organ donation is very important
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Your story is an amazing perspective. I was blessed to be scrubbed in for the first time for a kidney transplant with my supervisor this week.
Seeing with my own eyes the magical moment the recipient’s renal arteries are unclamped- the kidney becomes alive again and it is made their own (urine is made at that exact moment!)
I know where I am based, donors and recipients receive psychologist or psychiatrist input before the surgery happens.
However from the notes, I had no idea that you could have challenging emotional responses post surgery. I mean it is a life changing event…
Good luck and thanks for your entry 🙂
wow thats amazing that you would donate a kidney. thats really admirable
It appears some people are not emotionally equiped to donate. It would be interesting to know how many other donaters are affected in this way too.
Still, we admire what you did. Every action has good or bad consequencies. But we are not soothsayers, so must take the ride for what it is worth at the time, like taking an untrodden path.
You saved somebodies life. Why not dwell on that, instead ?
Colin.
This is a great, great, great post. Thank you for shedding light “on the other side”. This is the one post I will keep reiterating and sharing. You are brave.
someone died and his testament was: give my eyes to a young blind man down the street, he had helped me to smile when i was so sad.
i think, the dead never dead since then. touching post
The power of blogging.
I hope that this writing will somehow make it into the internet investigation by others who are considering becoming doners.
A powerful and significant message. Thanks so much.
i admire your courage – you have shown real compassion. We were made to have 2 kidneys and living with 1 is not easy. It sounds easy for people when they say, yeh I’d give you my kidney but the reality is much tougher. Well done on living up to your convictions. I lost a kidney to a rare cancer and life has never been the same since. In chinese medicine kidneys regulate bodily energy – take 1 out and the energy harmonies of the body go out of wack and it can take quite a while to readjust.
I feel loosing a kidney through cancer and I imagine loosing a kidney through a choice of compassion, helps you to appreciate life and the preciousness of each moment. We all have that gift – the opportunity to both embrace life and give life to another.
Another wonderfull, shall we call it side effect of losing any organ – is that part of you is allready dead. From that moment onwards you have a life long connection to death and life after death. And ultimately it leads you to the process of self enquiry – what am I ? And the only answer is emptiness. But that’s not the emptiness of nihilism, it’s the emptiness that comes as pure awareness.
Very interesting and also enlightening. Thank you. And I think you are right to be advocating for mental health care for living donors, as it seems to have become the reason for a lot of different ills in your life. As a psychotherapist it hurts me to see that a choice has turned into a curse for you. I wish you all the best.
Your act was heroic even without knowing what the consequences could be. Thank you for this post. I wish you good health and happiness.
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i feel sorry for the pains you still have to endure, and i am happy to read you made the best out of you with these sufferings.
You’re quite somebody, and I wish you get along well with the paradoxal story of yours. I was quite upset reading your post. I’ll keep you in my mind forever, since life is a matter of choices and yours is the real case.
Love from Kermal (from France)
You have done a marvelous thing, thank you for sharing us your story.
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I am a medico myself,& though Alhamdulillah I never had to face major surgeries myself,I never thought about this aspect of organ transplant….of life of the donor after organ donation.
We were never taught that in medical school.
And somehow,it just slipped me ( as other doctors),as we focus on the life of the recipient after organ transplant .
I know of only person closely,who donated a kidney to her diabetic husband,but never complained of anything.
Or maybe ,now it seems ,she chose not to.
So this part of the whole operation never occured to me,till today !
Thanks,for making me more aware,of what else doctors should be focussing on ,in their effort to help humanity.
I never know organ donations could have such a phycological effect on the mind. You did a great thing and you should be proud. Thanks for sharing your story.
Great Story!
My brother was also a live kidney donor back 2 years ago. The guy would have died had he not been a match and said yes. He is very close friends with him now and his entire family. At first i was hesitant when he told me what he wanted to do, but after the surgery was over and realized what a brave and awesome thing he did i am very very proud of him.
Thanks for sharing your story.
Tara
You did a real amazing thing that i believe many might not have done so willingly as you did. This post was an eye- opener. Thank you and may God bless you =D
Thank you for posting this. I have, as others have said, learned more about the experience, as a result of you posting. Your story is heartwarming and humbling. I wish you best of luck in your health, thank you again for sharing part of your journey with us.
Organ donors wow. I am one too. I better take this much more seriously. The thought can becomes someone’s life.
You have inspired me to consider giving something of value to help save anothers persons life. But you didn’t say weather you have recovered fully? Did the feeling in your leg recover? Will this shorten your life expectancy? Do you have to continue to stay on medication? Do you feel a certain ownership over the other persons life, like, similar feelings to an open adoption? If you needed a kidney donation would you have feelings of wanting yours back? Did the pains of past memories get resolved? Do you see the similarities of what you gave up for a persons life, and that of what Jesus gave up for us? If you are needing more healing, I think you will find that peace through Jesus. I hope you are able to enjoy your life to the fullest.
God Bless you 🙂
Very informative blog. The donor’s side of the story was real eye-opening. Thanks for sharing such vakuable information. Hats off to your courage for being living organ-donor !!
You must be a great humane person. I’ve always thought to donate my organs after I die, but never to be a living donor.
Thank you for sharing this with us.
Regards from Saudi Arabia.
Wow, very interesting read. Thank you so much. Good luck! 🙂
I honestly never considered the potential risks of being a donor- sort of like being an unsung hero? Utmost respect for you!
This again shows that body/soul/emotion are one. It is not possible to separate them. When the body undergoes an operation there is massive emotional trauma; when a “piece” is taken out, there is trauma connected with loss. As a therapist I work with, among others, breast-cancer women who loose a breast, and I have seen what this does to a person.
Thank you for sharing your story, and fighting for a more humane treatment of individuals.
This post has certainly opened my eyes to issues regarding living donation not revealed in any official materials being distributed. It seems very clear that unless you know the person you are donating to, and you have a strong personal connection and motivation that far outweighs all of your risk factors, then it would be better not to participate in this program.
Excellent post! Just ill be checking your blog more often 🙂
When I was a child My dad received a cadaver donor. Is that what you call when you harvest from the dead?
In retrospect, I did not understand his kidney disease, and perhaps I still don’t. One thing I do know, my dad’s kidney came from a Mexican boy who died in a car accident.
In all the details that my Mother and Father spared me; the kidney donor’s story was NOT one of them.
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Excellent beginning to the post. Wishing you the best of health.
You are such a strong and brave person to make the desicion to be a living donor, and for donating your kidney. People never seem to think about what the long term effects might be. And I am sorry to hear that you are suffering through those effects.
I have only been effected through blood transfusions, platlets and elctrolite transfusions when I was battling through Leukemia. Not as serious as a kidney or heart transplant. I will always be thankful to the donors that donated their blood and such. I had always wanted to donate my organs and such, but due to my cancer history I am not allowed in fear of passing on any remaining cancer cells that may be in my organs.
Kudos to you despite your hardships.
[…] autor: FreshlyPressed […]
One suggestion for the generous donors is to follow a diet with food that naturally supports kidney function. Okra, has been traditionally used to maintain/improve renal function in India and Africa. I am researching the scientific material behind this traditional claim on my site. Our thoughts are with you.
[…] essential for the generous donors who are left with a single kidney to ensure renal function (Click here to read a story about one such donor, written by the […]
[…] From the other side Explores the life and adverse effects experienced by a kidney donor. […]
O, my God! Good luck for you!
Hi Vicky,
I’m a living organ donor (2007) and experienced some of the same issues you’ve written about here. I have a friend who donated a portion of his liver just last year and is now, amazingly, being evaluated as a kidney donor. There often seems to be reluctance on the part of potential donors to give serious consideration to the documented negatives, or even the personal stories of those who found heroism a little more traumatic than they’d bargained for.
I hold no bitterness about my donation. But I wish I’d had better follow up and support from the medical teams involved. I felt rather abandoned. There are several things that seem kind of appalling where donor treatment is concerned. Thanks for your writing and research.
Christine Robinson