Divorce and the Single Kidney

Divorce may be the end of many things, but not living kidney donation. Teresa Messick, living-kidney-donor coordinator at Baylor University Medical Center in Dallas, has seen two cases of an ex-wife donating one of her kidneys to her ex-husband. And once, a former mother-in-law donated a kidney to her former son-in-law.

Just because these marriages had ended in divorce didn’t mean these people didn’t still care about each other. There are a lot of people out there with good hearts, Messick says.

Donations by exes are the exceptions.

While friends, workmates, club buddies, sorority sisters, fellow parishoners and the guy next door do donate, most frequently, the living kidney donor is a biological relative, Messick says. Records for Baylor from the Organ Procurement and Transplantation Network (OPTN), a private nonprofit under federal contract, show that 11 of the 29 living kidney donors this year through mid-October were biological relatives of the recipient.

The next largest group of living donors were spouses. (For the record: My wife, Monica Reeves, was the first to apply to be my kidney donor, and the first rejected — in her case, for medical reasons.)

My point is pretty much anyone can make a direct donation of one of their kidneys to me as long as they are healthy and a blood match, which involves a little more than just the blood type. Even if there’s no blood match, I could benefit through a pairing with other mismatched donor-recipients. In another blog post, I’ll explain how this would work.

So what do potential donors worry about, what are their concerns when debating if they should donate? Sometimes they know someone else who may need a kidney, and wrestle with the question of whether to save it for later. There’s the time off work, as minimal as it may be. Then there’s the No. 1 concern that Messick hears all the time from potential donors: the risk of surgery. Completely understandable.

To reduce the risk, there’s a rigorous screening process to ensure the overall health of the donor. About half of the people who apply to donate a kidney are rejected, frequently for diabetes, high blood pressure or weight problems.

“It’s tough to tell them they can’t donate,” Messick says, because by the time they actually apply they are emotionally committed to making the gift.

At least those divorced couples worked out OK, in a manner of speaking, giving a new dimension to the traditional marriage vow: What therefore God hath joined together, let no man put asunder.

Here’s the site to apply to be a donor: Living Donor Online Application. And here’s a site for kidney donor information: Living Kidney Donor Information.

Happy anniversary, Gordon

It’s my anniversary! Not that I’m particularly happy about it, but it was five years ago this month that I was diagnosed with chronic kidney disease. The diagnosis came out of the blue during some blood tests to determine why I was feeling sluggish. Well, they sure found out. The disease was wreaking havoc with my body.

I finally got it under control and out of the danger zone, and in the last five years I’ve adjusted my diet and lifestyle to generally keep the monster at bay. I’m now on the waiting list for a transplant and searching for a live donor.

Five years. My kidney doctor says that number of years without dialysis is unusual. I tell him it’s the Newcastle Brown Ale I favor.

In looking for a hook on which to hang this blog entry, without ruminating, I found that the number five is woven throughout stories and reports on the web. Following is a selection:

Hope and Disappointment in Dallas (with apologies to Hunter S. Thompson)

Wednesday was very, very good — for a while. Late that afternoon, the New York Times published a story headlined New Procedure Allows Kidney Transplants From Any Donor.
The story reported on a revolutionary procedure to alter the immune system of those with kidney disease so they could accept a kidney from an incompatible donor. No more blood matching required, one of the biggest hurdles to finding organs for the tens of thousands in need of them.
Needless to say, I was pumped. Now, all I needed was a healthy donor. Better yet, I had one in the pipeline. Or so I thought.
Two hours after the NYT story broke, a relative in Canada who’s been undergoing donor testing for about six weeks called to say she’d just received some bad news from the folks at Baylor hospital, which is handling my case.
One of the last tests before inviting her to Dallas for a final round of interviews and yet more tests showed that her kidney function was just below the normal threshold. She was rejected as a donor for me, the third to be turned down for medical reasons.
So now I don’t have a potential donor on the horizon, unless someone has stepped forward that I don’t know about.
For information on donating, here’s a link to Baylor’s informative site:  Living Kidney Donor Information.
Here’s the link to begin the donation process: Living Donor Online Application.

The Almost-Donor

The following was written by my friend Mark Obbie, the would-be donor I described in this previous post:

 
When Gordon first announced his need for a kidney and encouraged friends to get tested to see if they’re a match, I confess my first reaction was a selfish one: I hoped someone else would do this for him. Then I imagined my reaction at hearing that inevitable future announcement, that he has gone on dialysis. Or something even worse. Could I just shrug off the shame and regret I would feel for not having at least checked?

No, I couldn’t. So that was my rationale at first. I would get checked, probably fail, but feel relief for having acted. Then a funny thing happened. I was deemed a match. Then the more I learned about being a living donor, the more I realized the rewards far outweighed the risks and inconveniences of sharing a kidney with a friend who needs it — and who richly deserves this help.

I’ve known Gordon for more than 30 years, at first just casually when we worked for competing Houston newspapers; later as friends and colleagues for seven years in Dallas. Our young families socialized — my two children were just a little younger than his son Ian — and he and I spent (a few too many) memorable evenings at an infamous dive bar figuring out how to fix the world. After I moved back to New York almost 22 years ago, our contacts became much less frequent. I wasn’t there for him and Monica when they lost Ian to a tragic and senseless act of violence. I saw them on a couple of my business trips to Dallas and we talked or emailed a few times a year. My wife and I were thrilled to have Gordon and Monica as houseguests two summers ago as they toured our scenic part of New York. That’s when I learned more about Gordon’s kidney disease and the likely outcome if he didn’t get a transplant. It was only months later, though, when he started this blog, that I started to consider donating one of my kidneys.

After the results of the first round of blood and urine tests came back as a match, I had to think harder about what I had gotten myself into. Deeper research reinforced my early reactions. The downside to the operation and to living with one kidney was surprisingly slight. I would have to stay in Dallas for up to 10 days — a few days in the hospital, and then for a post-surgical checkup — and I would have to lie low for some weeks more. I’m self-employed, so that might mean an extended, unpaid vacation. But that was the worst of it. Long term, the only real negative is that if I ever suffered from renal failure or an injury that happened to damage my remaining kidney, I would be in more trouble than if I still had my backup kidney. That theoretical risk seemed to me so remote that it felt ridiculous to back out based on that. Driving to the airport, I figured, was a bigger actual risk (I was proved right about that, as it happens, after wrecking my car in a collision with a deer in the first moments of my trip to Dallas for more tests).

When I got to Dallas for the next and probably last battery of tests, it was clear to me that the process had shifted. Where the tests and conversations previously had been geared to finding any reason to keep me on the list, now the medical team was looking for any reason to exclude me. The most reassuring aspects of this were that I had my own doctors and advocates assigned to me (all paid for by Gordon’s insurance), and they saw it as their job to caution me and slow me down rather than sell me on this. They even let me know that if I suddenly got cold feet, not even Gordon would have to know my reasons for being rejected.

But nothing by this point dissuaded me. I was convinced the inconveniences were far outweighed by the prospect of giving my friend a far better quality of life than he otherwise will have without a transplant.

In my lengthy meeting with the donor nephrologist, he told me bluntly that his job is to make sure that someone trying to do good by donating a kidney will suffer no harm or unnecessary risks. At the end of his exam and counseling session with me, he put his verdict plainly: “I see no reason to stop this.” I hurried out of the meeting and told Gordon over coffee what he said. We tried, fairly unsuccessfully, to keep our enthusiasm in check.

After more tests, exams, counseling, and education sessions, my final meeting of the day was with the donor surgeon. We were barely a minute into her exam when she stopped short. “You had a pulmonary embolism?” she asked, stunned. Yes, I confirmed. I’d disclosed this on the initial questionnaire and in every relevant communication with the transplant team since. My nephrologist and I had discussed it at length that morning. But the surgeon clearly disagreed with his thumb’s up. This, she said firmly, was an automatic disqualifier. Now it was my turn to be stunned. I couldn’t challenge her medical judgment, but why were we just now discovering that she believed my rare condition poses an unnecessary risk?

I was crushed. By now, I was fully vested in the idea that this was happening. I felt a sense of pride and satisfaction that had brought me to tears when my assigned social worker had asked me why I was doing this and I tried to describe to her my motivation to help Gordon live out his remaining days in comfort and good health. To have that yanked away from me — more important, from him — at the last minute was devastating. As I stood outside the hospital waiting for Gordon to arrive, rehearsing how I would break the news to him, I grieved for my friend. And for myself. My good deed — maybe the best thing I might ever do — was dead.

Out of that came my decision to write this. I had not wanted to go public, especially now that my efforts were for naught. But I realized that by telling my story, I might inspire another friend to step up.

My Facebook feed regularly churns out posts by friends concerned with this disease or that. We wear bracelets and brightly colored T-shirts, run races and give money. But serving as a live kidney donor takes those pink-ribbon gestures to a far higher level. This is direct, targeted action. And it requires so little, really — discomfort and inconvenience that will slow you down for a small portion of one year — that I am surprised no one else outside of Gordon’s family has taken that first step, to find out if they’re a match.

If you don’t, maybe no one else will either.

Gobsmacked

Monday’s marathon of seven interviews and three additional tests for a very promising potential donor did not work out well. He was disqualified during the last interview because of a one-time medical event five years ago, an event that he disclosed in his initial application. And he disclosed it to Baylor hospital officials every chance since then.

It was not a secret, but it didn’t set off any alarm bells until we were so close.

Both my donor and I were gobsmacked, shocked because all the signals were so positive. One surgeon who interviewed him earlier Monday discussed the medical event at length, and in the end said he saw no reason not to continue the donation process. At that point we were pretty pumped.

The disqualification was a major bummer. Nobody slept well that night. But it was the right decision because this medical event, if repeated, could kill my friend. I wouldn’t want that to happen and obviously he wouldn’t either. We only wished he’d been disqualified earlier in the process, before he traveled hundreds of miles to get here.

I plan to pursue this with the Baylor University Medical Center, hopefully to ensure no one else gets so far into the process with a disclosed medical event that should have triggered a disqualification much earlier.

So I still need a living donor. I do believe this mistake was an aberration. Or at least I hope it was. And I don’t want his experience to dissuade any one else from considering to be a donor.

After all, what are the chances of getting struck by lightning more than once?

New Year, New Hope

2016 is just underway, but already it may be the luckiest year ever for me.

No, I didn’t win the Powerball lottery. But I do have two potential living donors, one a friend, the other a relative. No names yet as it’s too early in the process. Both could end up as unsuitable donors. I’ve already had three people who wanted to donate but were rejected for various medical reasons.

One of the potential donors is a positive match for my blood type and antigens; the other is awaiting word on what blood tests to have done. Later this month, the former potential donor is undergoing a day-long marathon of additional tests and interviews at Baylor hospital. The results will be evaluated by the same selection committee that decided I am a fit candidate to receive a kidney. (Something I found out after the committee gave me the green light: More than half the people who apply to receive a replacement kidney are rejected, many for medical reasons, others because they lack a sufficient post-op support system.)

This is fantastic news. And I certainly hope it all works out. But I have to temper my excitement over the prospect of getting a healthy kidney from a living donor with the reality that it’s not a fait accompli. There are still the tests and interviews in the one case, and the initial blood work in the other.

And just looking at one of the statistics on Baylor’s kidney transplant program, one of the busiest in the state, makes me guarded. The hospital performed only 42 living donor transplants in 2015. But I’ve always been an optimist. And even my veteran nephrologist, who’s pretty much seen it all, is excited about my prospects. Stay tuned.

And The Decision Is…

“Congratulations,” said the women on the other end of the line after telling me the Baylor Hospital selection committee had given me the green light for kidney transplant surgery. Now I can join the more than 9,000 people in Texas, and 90,000-plus nationwide, waiting for a replacement kidney.

Hopefully, the wait won’t be too long. My hope is that I can find a healthy, living donor who matches my blood type and several other blood markers. This is a much quicker process than the alternative, waiting for years for the less healthy cadaver donor. The selection committee’s decision on Friday paves the way for a transplant from either a living donor or cadaver.

You may find in it odd that Friday’s decision leaves me with mixed emotions. On one hand, it’s great to have the transplant option on the table. Many don’t. But the green light also forces me to recognize the full measure of my situation, something I now know I’ve kept at bay by focusing on doing everything I can to stay healthy. And while I’ve succeeded at being as healthy as I can, the larger reality of my situation has eluded me. Until today.

Thank you all for your good thoughts, vibes and prayers. Keep up the good work.

Fate Unknown, For Now

My fate as a kidney transplant recipient was decided yesterday by a selection committee at Baylor Hospital in Dallas. But I won’t know what the committee decided until Monday, resulting in a mildly anxious, but optimistic, weekend. The selection committee decides if an individual is healthy enough for a transplant, whether from a living donor or cadaver.

Yesterday was actually the second time the selection committee reviewed my case, which is based on months of tests, interviews and examinations. They first reviewed it December 4 and decided I needed a heart stress test because of my age and a heart valve repair surgery seven years ago. Luckily, I had the results of a recent stress test on hand, a test I passed with flying colors. That’s what they reviewed yesterday and that’s why I’m optimistic.

So now all I have to do is wait until Monday.

The Difficult Diner

“I’m the difficult one” is something I’ve said to countless waitstaff in countless restaurants across two continents. It’s a kind of mantra for those with chronic kidney disease intent on maintaining a low sodium diet.

And for the most part, it’s worked during the four years I’ve been battling the disease. My daily goal is 1500 mg. of sodium, slightly less than the content of a regular-sized order of french fries at Dairy Queen. Put another way, 1500 mg. of sodium equals about 0.75 teaspoons of salt.

I’ll usually wait until everyone else at the table has ordered before I launch into my sodium grilling. It can take a few minutes, but my fellow diners are invariably gracious about the process. Often times, I’ll have consulted with the restaurant’s chef or manager in advance to ensure the kitchen can be flexible.

I get enormous support from family, friends and others when it comes to maintaining my diet.

When the Red Tie Book Club meets at a restaurant each month, I get particular support from fellow-member Marilyn. “He can’t have salt. It’ll kill ‘em,” she sometimes tells the waitstaff in her distinctive East Texas voice.
Our longtime friends from the old neighborhood, Beth and Craig, have tailored their elegant Thanksgiving dinners to include low-sodium options. People are surprised that even celery has relatively high levels of sodium. Our new neighbors and friends, Judy and Bill, took a pork tenderloin recipe that would have provided me several days worth of sodium, and tinkered with the ingredients. The result was a marvelous — and healthy — dinner I could enjoy with impunity. And San Diego friends Jon and Peggy go out of their way to ensure that the 1500 mg. level is maintained. When Jon smoked ribs on our last trip to the coast — smoking chemically changes meats and fish to raise sodium levels — I had a juicy grilled steak and asparagus. Even the mashed potatoes had no salt.

When my wife, Monica, and I visited longtime friends Mark and Nancy at their log home in upstate New York, they, too, tailored meals with my limitations in mind. The grilled steak and salmon were perfect, as was the farm fresh corn with unsalted butter. Luckily, we didn’t have to worry about the superb red wine we had on the porch after one meal. It’s all but sodium-free.

My former co-worker from long ago in Houston, Olive, let’s me pick the restaurant even when she pays. Friends Danna and Jim prepared a marvelous chicken piccata dish at their new place, using unsalted chicken broth and serving the high-sodium capers on the side. Anne and Charles are mindful, too, of my sodium mantra when we go out to dinner. Sevan G & G on Greenville Ave., probably Anne and Charles’ favorite place, has a Mediterranean menu that seriously challenges my dietary restrictions. So the last time we dined together, it was at a new seafood restaurant across the river, AmberJax, where the fish are prepared to order. Easy pickings for a guy like me.

Friends from Santa Fe, Gary and Sherry, have sometimes turned over their home with its first-rate kitchen and incredible views when they go on vacation. Beau, whom we dogsit while they’re away, doesn’t seem bothered by my dietary requirements so long as he gets his regular food and treats, and reassurance when storms roll in over the mountains. Santa Fe can be a challenging place for me because many New Mexican dishes are enhanced with salt. But Gary and Sherry introduced me to one restaurant near them that was heaven to me. I cornered the chef to find out how she did the potatoes. I can still taste them.

My family has been very supportive on our trips to Canada. Sister Sheila is always asking if this food or that ingredient falls within the boundaries. Sister Patricia, who loves to cook and bake Croatian dishes, is the same. Both of them also have good stocks of Canadian beer. (Beer, like wine, is almost sodium-free.) And when my sisters’ kids got married, Hannah this year and Tim a couple of years back, special meals were prepared for me. Pretty good, eh? Tim, who loves to cook, has also done more than his share to accommodate me. Cousin Karen, a gourmet cook, made sure I could eat almost everything at a dinner she hosted for all the cousins and spouses.

On a river cruise in Europe this summer, the matre d’ came to me each morning at the breakfast table and went over the day’s menu, what I needed and how I wanted it prepared. The head chef even brought out my dinner on a couple of occasions.

But my biggest supporter has been Monica, without whom I would never have maintained such a strict diet. One part nag, one part suggester, she’s been with me from the start. She puts up with all the low-sodium dishes I’ve prepared at home. Luckily, she can get out with friends to feast on the delights I have to forego, like pizza, gourmet grilled sandwiches and Thai food. And while her watchful eye is sometimes a nuisance, I know she does it out of love. So thank you, Monica, for everything.

I’m not sure how long I’ll need to be vigilant about my diet. Even after a transplant, I doubt there will be pizza and pastrami in my future. So after years of explaining that as benign as some food items may seem — mustard, mayo and bread are off the table — I figure the inscription on the tiny condo door where my ashes are kept will read: “He was the difficult one.”

Grading, the Bucket List and Swapping

Grading the Candidate
Getting in line for a donor kidney is somewhat akin to a performance review, only it’s your life, not a promotion, that’s at stake. You just don’t walk into the local hospital and say, “Put me on the list.”

First — no surprise here — the hospital checks insurance to figure out coverage for me and my donor. The price tag for the transplant and related costs is $260,000 by one estimate. No problem there for me. I’m lucky, with coverage from Medicare and a great secondary policy. For others, it may be Medicaid, special Social Security programs for those with low incomes or even fundraising.

I then filled out reams of detailed forms about medical and family history. I enlisted and identified for my transplant team four people who would drive me to and from post-transplant appointments — of which there will be many.

I was interviewed separately by a social worker, a transplant surgeon and a transplant nurse. During some of the interviews, I felt like I was being graded. I watched films and slideshows about the transplant process and what to expect afterwards. The social worker went over the high cost of drugs I’ll be taking for the rest of my life. My blood was drawn (12 viles in one sitting) and my kidneys, heart and bladder were sonogrammed. The final step in the process is a colonoscopy scheduled for November 23.

Ultimately, all this information will be presented to a hospital panel that will determine if I’m a good candidate for a transplant, whether from a cadaver or a living donor. I certainly expect to be. Obviously, a living donor is preferable, not only because the wait for a cadaver kidney could stretch over several years, but because it’s a much healthier option.

Ah, Yes. The Bucket List
During my misspent youth, I lived in Australia and worked for the Sydney Morning Herald. I’ve often thought about returning, if only to visit, but never have. My health has given me a new perspective. Yeah, I know. It’s such a cliché.

My condition is stable right now after a recent slide. And I’m not on dialysis. I’m hopeful of getting a thumbs-up from the hospital panel evaluating my case and being added to the waiting list, the long waiting list. I’m also hopeful of finding a living donor.

Meanwhile, Monica and I are planning a trip to Australia and New Zealand early in the new year. A trip that includes a bundle of travel insurance.

I’ve contacted friends from my Sydney days and a reunion is in the works. I’m looking forward to the trip, even those 16 hours in the air to get there.
Swap Meet
I said in the last posting that I’d explain pairing, which is like going to the dance with one person but leaving with another, while remaining friends with the first. Paired donation is an option for transplant candidates who have a willing but incompatible donor.

For example, if you wanted to donate a kidney to me but were incompatible, the Organ Procurement and Transplantation Network would find another pair with which my donor would be compatible. The donor in that pair would, in turn, be compatible with me. Two transplants would follow.

Pairing, also known as a kidney swap, can be effective on a larger scale. Much, much larger. In early 2012, the New York Times ran an inspiring front-page story 60 Lives, 30 Kidneys, All Linked that drives home the power of pairing. Check it out. Planes whizzing all over the US and Canada carried kidneys to the intended, and compatible, recipients.

Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said.

Learn about kidney paired donations here.

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