I’m always appreciative when people spread the word about this website and related issues that are important to me: organ donation, living kidney donation, chronic kidney disease, and, most recently, our book, The Insider’s Guide to Living Kidney Donation. There are lots of ways you can do that.
#1. Whether you buy the book on Amazon or any other site (see below), please consider posting a review of the book on Amazon.
What a kick it was for Betsy and me to celebrate the launch of our new book, The Insider’s Guide to Living Kidney Donation,with our contributors, supporters, families, and friends this weekend. A book launch COVID-style, that is. The official publication date is next week, on September 23, but after waiting roughly seven years, we couldn’t wait a minute longer.
These were the first pictures we’ve taken together since COVID and certainly since Betsy’s dual transplant in late May. It was small and low key but exciting and very gratifying to sell and sign books in person.
Now we get back to work promoting the book and spreading the word about living kidney donation. You can order the paperback or Kindle on Amazon, through BookBaby–or ask your local bookstore to order it.
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
microscope.
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.
Paul and my husband, Neil, with me at the 2016 Triangle Kidney Walk in Durham, NC.
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
As you may know, some of the information for this site comes from the book The Greatest Gift: The Insider’s Guide to Living Kidney Donation, which I am writing with Betsy Crais, a live-donor kidney recipient. As we come into the final lap of the book’s marathon preparation, I thought it was time to share its origins with you.
Betsy and I met nearly two decades ago when our daughters were in the same Girl Scout troop (we bonded when we shared a pup tent during a camping trip). Some years later we discovered that we also shared a passion for encouraging living organ donation, which has resulted in this book.
Elizabeth (“Betsy”) Crais, left, and me at the University of North Carolina’s Live Donor Champion program, Chapel Hill, NC, on March 24, 2019.
How did we go from tent-mates to co-authors? I’m glad you asked. Read on.
When Betsy first faced declining kidney function and had to consider dialysis and ultimately a transplant about 15 years ago, the only books she found to inform her were renal-focused cookbooks or medical texts about kidney diseases, with short chapters about her condition (polycystic kidney disease, or PKD). There was little available on what to expect before and after dialysis or transplant, and certainly nothing that delved into topics related to emotions or family relationships.
Fortunately for
Betsy, she at least could talk about her disease with her mother and two of her
siblings, who also had PKD. Through them, she could at least get some of her
personal questions answered. Later her sisters also came to help her when she
had her surgeries. Although her siblings’ care was a great blessing, the best
part was having someone there who had been through the experience and could
guide her expectations.
In contrast, when I faced the opposite situation a couple of years later—contemplating being a living donor for my 25-year-old son, Paul—I knew no one who had donated a kidney. I had dozens of questions and could ask the professionals some of them but had no one to advise me who’d been through the experience. For Paul’s questions, fortunately our family could call on Betsy, who talked to Paul to help allay his and the rest of the family’s concerns. Most important, Betsy shared some encouraging examples of how her quality of life had improved post transplant compared with her time on dialysis.
Not long after Betsy’s transplant and recovery, she began thinking about her difficult experiences and the silver lining of having family members with PKD who could be her own invaluable support group. The awareness that most people, like me, do not have that critical support prompted us both to want to write a book that could help others be more informed about what to expect in the donation and transplantation processes. Both of us had been surprised and frustrated to find so little practical, nontechnical information and support in those pre-Google days.
Early on Betsy drafted an outline and started thinking of people who might contribute various chapters, and Carol wrote an occasional op-ed piece on being a living donor. But because of day-to-day obligations it would be several more years before Carol reached out to Betsy to talk concretely about an idea for this book.
Neither of us knew that the other had already been thinking along the same lines.
Next time I’ll provide some specifics about The Greatest Gift: The Insider’s Guide to Living Kidney Donation and share with you our goals for the book.