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Advocacy Living Donor Protections

From a Living Donor’s Perspective – Choosing a Transplant Center

By the time a would-be recipient is listed for transplant (or told by their specialist they should start looking for a living donor because they’ll never obtain a deceased donor transplant – scare tactics 101), they’ve been dealing with their chronic illness long enough to have a legion of doctors, specialists and probably an affiliation with a transplant program already in place.

Because of this, and the fact that living donors are an accomodating, giving lot, the person who presents themselves as the prospective living donor will immediately decide to have their evaluation and surgery conducted at the same facility as the recipient, even if that means great inconvenience and traveling thousands of miles away from home.

I’m here to say this is a profoungly bad idea.

Most people, especially women, won’t see a hairstylist unless s/he comes with recommendations and most people won’t hire a contractor to tile their bathroom floor without researching them first. So why do living donors blindly choose a transplant center based on what’s good for the recipient* and then take whatever surgeon they’re handed?

I cannot stress this enough – THE TRANSPLANT INDUSTRY IS STRUCTURED TO CATER TO THE NEEDS OF THE RECIPIENT. THE LIVING DONOR IS A MEANS TO THE END GOAL OF GETTING THE RECIPIENT A TRANSPLANT.

Sounds harsh, doesn’t it? Maybe so, but it’s also the only philosophy that will fully protect the (propsective) living donor from the sometimes ignorant, sometimes misinformed, sometimes naive, sometimes profit-driven, sometimes arrogant, sometimes well-intended-but-misguided attitudes of everyone connected to a hospital’s transplant program. In other words, the only true and best advocate a prospective living donor can have is themselves**.

A prospective living donor has the right to choose their surgeon and surgical facility like any other patient, independent of the recipient.

Here are the practical reasons for a living donor to have their procedure close to their home:

1. This is a person’s life and health we’re talking about. A living donor is already undergoing a needless, major surgery with untold risks; having the best (most trustworthy, lowest mortality/morbidity rate, high level of expertise, etc) surgeon and facility only makes sense.

2. A living donor is often discharged after two days, but complications can and do arise. The transplant program who performed the surgery is legally and ethically responsible for treating and resolving any complications. That would be impossible if the living donor returned home, hundreds or thousands of miles away.

3. Continuity of care is important in any patient’s treatment. If a living donor does experience a complication and seeks treatment at a different facility, s/he will be under the care of different practitioners who may or may not have access to the treatment records at the other hospital.

4. The recipient’s insurance is responsible for any expenses related to the living donor evaluation or surgery. Any facility other than the transplant center where the surgery was performed won’t have the recipient’s insurance information. They will demand the living donor’s insurance information and most likely, the living donor will be billed for the treatment (and imagine if the living donor doesn’t have insurance). There have been media stories of such things; real occurrances are much higher.

“But, but, but,” I’ve heard folks argue, “such-n-such transplant program wouldn’t allow me to have my surgery at a different center [insert reason here].”

In short – fuck ’em. There is no reason why a living donor can’t be at a different center than the recipient. Donated organs are transported all the time, every day. All those swaps and chains that keep making the newspapers, compliments of the transplant center’s PR machines – those exist because we have the technology to take an organ from point A to B (they’re called cars, planes and traines), and keep an organ viable for many, many hours, sometimes days. Any statement to the contrary is simply hooey.

If a surgeon/program’s true priority is the care of the would-be recipient, they won’t let something like geography stand in the way of a transplant. To do otherwise is putting the center’s ego and profits first. And the last thing anyone should do is put their literal lives and well-being in the hands of an organization like that.

*Yes, I know; because that’s why people become living donors in the first place – to do what they think is best for the recipient.

**Or a real independent donor advocate, someone not affiliated with a transplant center in any way, but that will put your best interests first.

One reply on “From a Living Donor’s Perspective – Choosing a Transplant Center”

Thank you many times over for this website! I just discovered it this past week. I am sending you a post I recently made on a blog of mine at http://type1d.blogspot.com/. By the way, as the donor for my husband, I was hospitalized for several days . . . just as long as he was. Had I not insisted on the hospital more carefully evaluating my brachial plexus injury, and providing me therapy while I was there, they would have actually released me much earlier! This was even though they weren't sure whether or not I would regain use of my hand and arm. After my nephrectomy, it was totally "dead" from the shoulder down. Here is the entry:

As a living kidney donor, how much do I need to worry about complications down the road?
Please see:

http://www.livingdonor101.com/

Have included a link here for living kidney donors. The website tells about possible complications from only having one kidney. Some of it is pretty scary stuff, and I am wondering how much of it I really need to worry about. When I asked about later problems for donors before I donated my kidney to my husband who had been on dialysis for many months, I was told only: "Sometimes, donors are prone to high blood pressure later." That was it, end of story! As a person who has always had low blood pressure, I figured I would be fine.

Oh . . . there was also something said by an "advocate" about some donors who had temporary partial numbness in their arm, but that was made light of by the surgeon later when I asked about it. After waking up with a totally paralyzed arm from a brachial plexus/nerve injury because of the way I was positioned during the laparoscopic surgery, months of painful therapy and many months of painful recuperation, I would tell anyone who is thinking of doing this: Do lots of research, and then when you think you know it all, do more! If I had it to do over again, I would go for an "open" surgery instead of the laparoscopic procedure. What's a big scar on your midsection compared to not being able to use one of your arms/hands? When I asked her, the advocate had told me that was the way she would go, and then her opinion was dismissed by the surgeon when I asked him about it. Had I only known! What a scary experience, as it was not known at first if I would regain use of my hand and arm or not.

Thank God, I regained most of the use and feeling back in my arm and hand, but it will never be at 100% again. Yes, my kidney saved my husband's life, as he was ready to quit dialysis, rather than live with being hooked to a machine for 4 to 5 hours, every other day . . . but we also did not fully appreciate all the side effects that all the medicines he now has to take would have on him. That is, not until later.

What really angers me is that the hospitals and doctors who do the transplants have no protocols or follow-ups for the donors after they harvest the kidney. When I told one of them later that I thought this was crazy, they had little to say on the matter! In the meantime, I found a personal doctor/physician's assistant who appreciates my concerns and does a yearly work-up for me, also including anything that might show problems with my remaining kidney. So far, so good.

I would love to hear from anyone who has had a similar experience . . . anyone out there?

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