So glad that ABC News (WTVD) did a piece on Betsy Crais’s need for a second transplant (see the video), as I described in a post about my book’s co-author last month.
Betsy initially thought she had four possible kidney donors in her immediate family. A few weeks ago she received a call from the transplant center saying that one by one, all of them had been eliminated. Potential donors have to be in excellent health and can be disqualified not only if they have a condition that could potentially harm the recipient–but also if donating might jeopardize their own health.
Fortunately, Betsy has never been one to be discouraged for long. She took a deep breath and sat down to send off an email to friends, family, and colleagues, letting them know about her kidney failure after 15 years of a successful transplant. Within minutes of hitting SEND, Betsy was heartened to receive not only messages of concern and support but even several inquiries about how to be tested to be a donor.
Because the transplant center will consider and test only one candidate at a time, Betsy and her family now have to wait impatiently for word from the transplant coordinators. Although Betsy is on the waiting list for a deceased donor, that wait is often several years long. A transplant from a live donor might be just months away, typically has a better chance of success, and can last up to twice as long. Naturally, Betsy is fervently hoping for a live donor.
In the meantime, she had an access port surgically created in her arm in readiness for dialysis. Betsy’s condition is stable, so there’s a chance she may never need it–if a donor is approved in time, she could have a preemptive kidney transplant (that is, before she needs dialysis).
Thirteen years ago this week, my son and I went into UNC transplant center with four kidneys between us. When we left a few days later, we still had four, but he had most of them. He still does. I’ve written here and elsewhere about “our” story, so this is his chance to share his perspective on this momentous experience, which had begun 2 years earlier.
Thirteen years ago I received a kidney transplant from my mother. I appreciate this kind act, but knew she would not disappoint. I also am glad to know that she has benefited from this act, and has become an activist for living kidney donation.
Here’s some background: when I was in college, I was diagnosed with IgA nephropathy. It was discovered in lab work after I had gotten sick with strep. Years later I learned that that was often a trigger for my type of kidney condition. I had no symptoms, though, and was otherwise healthy—I didn’t have diabetes or high blood pressure, which are common causes of kidney failure—and I was thin, with no family history, so the nephrologist said it was something to monitor and take seriously, but wasn’t expected to get much worse, at least not in the foreseeable future. I had regular lab work throughout college.
At my first post-college
appointment, the blood test results showed that my kidneys were failing; I
learned I would soon need dialysis and then would have to be on it until I
could receive a kidney transplant. The doctor first told me I might have to
start dialysis in a year, but it ended up being only 3 months. I had just
graduated college, and I was nervous but hopeful about the future. Before that
appointment I had no idea I had kidney failure, let alone that I’d be on
dialysis in 3 months.
Dialysis was the worst
experience of my life. It began with two painful insertions of needles into my
arm, followed by being connected to a dialysis machine 3 hours at a time 3 days
a week. With prep time and post-time, plus another hour for transportation, it
was more than half a day. When I got home I just didn’t feel like doing much of
anything. I didn’t feel like myself and couldn’t relax. I had time for little
else. I felt like my life was under a
My parents began the
process of applying to be donors. My dad was eliminated for having had a kidney
stone and my sister was too young at the time. My mom made it through the first
round, but the hospital wouldn’t allow her to begin the actual testing because
I did not have health insurance that would cover the donor, which is usually
part of the recipient’s insurance. Because I was no longer a full-time student,
I wasn’t covered by my parents’ health insurance. Had the Affordable Care Act
been in effect then, since I was under 26 I could have remained on my parents’
plan. Medicare has an ESRD category for kidney failure patients, but it required
a certain amount of “work quarters” to qualify. This was particularly upsetting
because having just been in college and now with my health suddenly failing, I
didn’t yet qualify. I then had to earn work quarters while on dialysis, which
limited how much I could work.
I felt horrible about the
awful luck that put me in this situation. I was angry at a health care system
that puts such policies in place. I believe I have a right to health care. Had
insurance not been an issue, I could have spent 1 year less on dialysis and
gotten my transplant a year earlier. And if, instead, my kidneys had failed a
year later, this policy might have been moot because I probably would have earned
enough work quarters by then.
Meanwhile, for more than a year my family made countless phone calls and wrote pleading letters to the hospital and anywhere we could, hoping I could somehow get a transplant soon. After a lot of advocacy, the hospital finally agreed to take on the costs and allowed my mom to begin the testing. It even agreed to pay for the donation surgery itself if Medicare did not come through, but I accumulated enough work quarters by then.
I knew that if my mom couldn’t donate to me, there were no other potential donors at the time. So I was really crossing my fingers after each of her tests, knowing that she could be disqualified at any point.
I checked into the
hospital the day before the transplant and had dialysis there. When I prepped that
night I was mistakenly told I could use the special soap for my hair, and it
got in my eyes. They were still stinging the next morning, which naturally increased
my nervousness about the transplant.
Transplant day finally
came after 1 year and 8 months of dialysis. I vaguely remember being wheeled into
intensive care after the surgery. From what I could tell, the doctors thought
it had gone successfully. When my dad and sister came in to see me and asked me
how I was, my response was “could be worse.”
I recovered at my
parents’ house for more than a month. I still had several things attached to my
body. I had frequent doctor’s appointments and usually would have something
removed/disconnected each time: a stent one day, a catheter another. Slowly, I
began to regain my life and at a point feel like I did before the transplant
and then, eventually, feel better than I had on dialysis.
By no means is being a transplant
recipient easy—there are a lot of things to keep track of, like medicines,
appointments, protection from getting sick. There will always be potential
hazards, and I’ll always need to take extra precautions. I check expiration dates
a lot more closely than before and cancel get-togethers with family and friends
if one of them is sick even with a cold. My immune system will always be
suppressed to keep it from rejecting my mom’s kidney.
But life as a transplant patient is so much better than the traumatic experience I went through as a dialysis patient. –Paul Offen, Chapel Hill, NC
1-People with kidney failure have dialysis every few weeks.
hemodialysis at a dialysis center, the standard is 3 times a week; patients who
have some form of dialysis at home may do it 4 to 7 times a week.
2-Dialysis sessions usually last 3 to 4 hours at a time.
True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.
3-Dialysis can approximate about half of kidney
advanced as it is, dialysis accomplishes only about 20% of normal kidney
4-People on dialysis can skip a few sessions if they’re
busy or go on vacation.
a session very occasionally is not usually a problem, but skipping several
sessions is extremely dangerous and can be fatal as toxins build up in the
blood. Patients who go out of town can try to arrange in advance to have
sessions at a dialysis center at their destination.
5-Dialysis is an equally effective alternative to
transplant for someone with kidney failure.
possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25%
mortality rate, with a 5-year survival rate of 35%. People who receive transplants
have a 3% mortality rate after 5 years.*
Between us, my son and I have four kidneys—not very remarkable, except that he has three of them. I gave him one of mine about twelve years ago. The reason was simple: after spending nearly two years on dialysis, he clearly needed the kidney and I didn’t. I still had another that worked just fine so it was a perfect opportunity to share resources within the family. Today even unrelated people in different parts of the country can do the same, thanks to sophisticated computer algorithms. But this was more than twelve years ago.
My son, Paul, had the extraordinarily bad luck to develop chronic
kidney disease—which can gradually lead to kidney failure—when he was in
college. He was otherwise healthy, we had no family history of it, and
he didn’t have diabetes or hypertension. Plus he was skinny.
This post is excerpted from an article I wrote for the Fall 2018 issue of South Writ Large, a quarterly online magazine published since 2007. The theme of the issue was sharing resources, so living kidney donation was a natural fit.