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Scrub nurse Imelda Macatangay, center, assists in a surgery harvesting a healthy kidney from donor Tom Otten, at Georgetown University Hospital in Washington, Friday, Dec. 4, 2009. Others are medical student June Chanyasulkit, right, and Dr. Lee Cummings, left, transplant surgery fellow. (Manuel Balce Ceneta/AP)

“It’s what we learned in kindergarten. If you have two of something and you only need one, share it,” said Barbara Thorp, my father’s living kidney donor.

Could saving a life really be as simple as that?

It was 24 hours post-transplant, and I’d just helped my father make the steady, miraculous walk down the hall from his inpatient room to Barbara’s.

I’d watched my father deteriorate for months; his muscles weakened, his complexion turned ashen. I could measure his life slipping away by the way he sounded when he answered the phone.

Now, Barbara’s kidney was already doing its job mightily — producing urine, restoring his complexion, giving him his voice back. The man we had nicknamed Lazarus because he overcame serious illnesses so many times would, for now, rise up again.

Why do some decide to give a kidney, bone marrow, a portion of a liver, or sign up to be an organ donor?

Nationally, more than 118,000 people currently await an organ transplant; nearly 100,000 of them are waiting for a kidney transplant. So far in 2013, nearly 1,400 living donor kidney transplants, also called altruistic donations, which typically yield better outcomes than deceased donor transplants, have occurred.

Why do some decide to give a kidney, bone marrow, a portion of a liver, or sign up to be an organ donor?

It is an honor and a privilege to help,” Barbara said almost as if she were the lucky one. She is a family friend who got the call that she was a match for my father two years to the day after her own husband’s passing, a twist of fate and timing. As a deeply spiritual and religious woman, she saw this as God’s sign this was meant to be.

I can’t help but wonder if part of her sacrifice was to try and spare us the loss she had recently experienced, or if it was a way to reaffirm how precious life is. Perhaps, as with many Good Samaritans, the potential risks simply paled in comparison to the possibility of saving a life. Research suggests that living kidney donation has an overall positive impact on donors, and the ability to contribute to a better life for another person was a predominant feature of their choices to donate.

None of his close relatives were eligible to donate for medical reasons, but my father is one of the fortunate ones in a system that does not guarantee happy endings. A kidney cancer survivor, he’d lived with one remaining kidney and with moderate kidney failure for years, but his progression to total renal failure and then transplantation were comparatively quick, a matter of months. Some live on dialysis for years as they wait for a match; some never find one.

He was fortunate to have had a long waiting list of people willing to go through the screening process for him. From his position of extreme vulnerability, this was one of the most humbling facets of his journey.

Since the first kidney transplant in 1954, the field of transplantation has raised questions we continue to grapple with today. Recently, the story of 10-year-old cystic fibrosis patient Sarah Murnaghan’s fight for lungs prompted many questions about transplantation ethics and allocation. Her parents successfully sued for her right to be eligible for adult lungs, citing the arbitrary nature of the rule that required patients to be 12 years of age, and the lack of pediatric donor lungs. She underwent two separate double lung transplants.

Beneath the politics, the bureaucracy, and all the challenges, I fear we sometimes overlook our most precious resource of all — the incredible human capacity to help, when given the opportunity.

The Murnaghan case highlights what scarce and valuable resources donor organs are, and the complexity involved in these life and death decisions. At the same time, I can’t help but think about Barbara’s response when faced with the possibility of saving a life. Once the transplant team determined she was a good match, that she would not put herself at undue risk, and that she had the social support necessary to recover, the decision was ultimately a simple one for her.

Four months after the surgery, Barbara says she is feeling great. My father celebrated his birthday last week, and I raised my glass in her name, mindful of fact that from here on, all birthdays, holidays, and our family’s collective memories will be inextricably linked to her decision. Beneath the politics, the bureaucracy, and all the challenges, I fear we sometimes overlook our most precious resource of all — the incredible human capacity to help, when given the opportunity.

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Tags: Family

The views and opinions expressed in this piece are solely those of the writer and do not in any way reflect the views of WBUR management or its employees.

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  • Past donor

    Unfortunately, there are serious drawbacks for the donor. In many cases, the donor (and the donors family, if he or she is the primary insured) will lose insurance coverage. Read the following New York Times article:

    http://well.blogs.nytimes.com/2012/06/11/the-reward-for-donating-a-kidney-no-insurance/

    The real scandal here is that the National Kidney Foundation will NOT tell you this before they gladly harvest your kidney. You will find out the old fashioned way… SURPRISE!!

    Don’t believe me? Try calling the National Kidney Foundation and pose as a potential donor. Ask them if they know about any insurance issues associated with Kidney donation. They know all about it, but they won’t divulge a thing because some shifty staff lawyer probably counseled them that they’re not legally obligated to do so. But hey, you’re just the sap giving up a body part…

  • livingdonor101

    I relish this phrase ‘undue risk’. Who determines that, the doctors who don’t have to live with the consequences, pay for future health care costs, or treat the living donor after surgery?

    A kidney is not a pint of blood. 4.4 living kidney donors die every year in the US within 12 months of surgery. 20% experience complications: hernia, chylous ascites, nerve damage, intestinal blockage, pancreatitis, testicular swelling and sensitivity, etc.

    20-30% suffer from depression, anxiety, anger, grief and/or PTSD. Transplant centers do not have structured aftercare or support services for their living donors, and recipient’s health insurance does not pay for mental health treatment.

    Since 2000, transplant centers have been legally obligated to report one year of follow-up on all living donors. Yet as of last year, 1/3 were still reported ‘lost’, with no evidence follow-up was attempted. OPTN’s own data task force called the database ‘woefully incomplete’ and ‘useless’. Forget about any data long-term; we have no idea what happens to living kidney donors at all.

    The Swiss living donor registry reveals that after 10 years 49% of LKDs have cardiovascular issues, 47% are hypertensive and 45% have kidney function low enough to be diagnosed with chronic kidney disease stage 3 or 4. In the US, more than 300 living kidney donor have been wait listed in need of a transplant since 1994, a number that increased 13% in the past year.

    As the sister of a kidney transplant recipient, I understand the need for more donor organs. But as a living kidney donor and advocate, I find this constant minimizing of the risks of living donation to be manipulative and unethical. The public should never be viewed as medical supply. Living donors are people too.

    http://www.livingdonor101.com

    • hilary v. greene

      As a living donor- a lobe of my lung, not a kidney- i can tell you that I was told the dangers of the surgery over and over again and told I could change my mind at ANY time, even as they were wheeling me into the operating room. Though I cannot speak for kidney donors, at Mass. General where we had our surgery both of the donors were handled very carefully and always made aware of any dangers that were a part of the double lung transplant. I think unless you are a living donor yourself you shouldn’t think that we didn’t know what we were getting into or that we were guilted into donating. There is NO way anyone can force you to donate an organ. Speaking for myself, I would do it again in a heartbeat, it was one of the best experiences of my life.

      • bone marrow

        I’m glad that your particular surgery worked out – you should be commended for your selfless gift. Unfortunately, donor complications routinely occur in all living donor fields.

        In my case, it was a bone marrow donation a few years ago. I was matched to an anonymous recipient and agreed to submit to the surgical harvest. I became very ill shortly thereafter. My doctors subsequently diagnosed me with a serious medical condition that they believe I contracted as a result of the surgery.

        I was repeatedly assured before the operation that in the “unlikely” event that I became ill, their organization was fully insured and they would take care of me. That was a complete lie. I have been fighting them for insurance coverage ever since. I lost my job as a result of my illness, and just recently, my house.

        To make matters worse, I find out after the surgery that, according to their own internal statistics, the medical community is fully aware that bone marrow donation is not completely safe. Roughly 1 of every 70 bone marrow donors suffers a serious medical complication as a result of the donation: palsy and convulsions, ulcerative colitis, hypothyroidism, complete alopecia (that’s complete loss of all your hair), serious infections. And those are only a few of the ones they know about – the longer term effects (how it affects aging, lifespan, etc..) are “still under review”. Of course, these statistics were not shared with me before I agreed to the operation. Unlike your experience, I was repeatedly told how safe and routine the operation was.

        And so, my good deed is repaid in a novel way – I have to submit to an IV drip of medicine every 3 days for the rest of my life – but hey, at least I get to self-administer! :)

        • hilary v. greene

          I am so sorry to hear about your problems. I guess I am thinking if you are told of the risks you have to make your own decision. Yes, they have to be upfront and honest about it all and again I was told to contact my insurance company to find out if I would be covered should anything go wrong and they said no. The surgery and follow up was all covered by the recipient’s insurance but it was made clear to me that since this was elective surgery, my company pretty much told me I was on my own. So all in all I feel I was well warned about all the possible bad outcomes, but decided to do it. Would you have mad ea different decision if you had been told the honest truth?

          • bone marrow

            I certainly don’t like to have the truth hidden from me. You can not ask anyone to submit to such a procedure without giving them an honest assessment of the risks involved. It’s simply immoral.

            But the real violation in my case was that the organization that arranged for the bone marrow donation simply lied to me about their insurance coverage. By their deception, they have placed me and my entire family in a terrible predicament.

  • Guest

    I also

  • Hillary Rettig

    First, I love this article. I donated a kidney to a stranger a few years back from the same motives. A bit of inconvenience to save a life? Sweet deal.

    Here is an article I wrote about my donation:
    http://www.hillaryrettig.com/2011/03/28/vegankidneydonation/

    Similar to the other commenting Hilary, donating was one of the best things I’ve ever done and I would do it again in a heartbeat. The doctors vet donors closely to ensure a good outcome – the below article I wrote about my process talks about that – and I do feel I was very well informed about the risks, up to the very last minute as the other Hilary notes.

    I also did my own research and learned that kidney donors are just as healthy and live just as long as the general population. These are statistical aggregates and of course individual outcomes can differ. But overall donors do very well.

    re health insurance i have limited experience here but it wasn’t an issue. My insurer didn’t change my status or rates or anything. (Remember: the recipient’s insurance pays for everything.) I am switching insurers later this year so we will see if I have trouble for having a “pre-existing condition.” However, I think I won’t – thank you Obamacare .

    And thanks to Laurie Edwards and WBUR for doing such a great piece on such an important topic, and to Barbara for saving Laurie’s dad’s life. (Of course the ultimate solution is for the US to adopt an opt-out donor system where you’re automatically an organ donor unless you explicitly say you don’t want to be. Then we would have an abundance of organs instead of a scarcity.)

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