Photo by Kara Thorpe
After donating a kidney to help a CKD patient, Marianne Clyde urges others to consider organ donation
December and the holidays are times when we think about, and give thanks for, all our blessings. This December, Chronic Kidney Disease patient Lake Lester of Warrenton is thankful for his health and thankful for the generosity and kindness of local businesswoman and therapist Marianne Clyde, which enabled him to have a kidney transplant after a year of dialysis.
A year ago, the two were acquainted but didn’t know each other very well. That changed this past summer when Lake, 76, needed a kidney transplant, and Marianne became involved. Although she wasn’t a match for Lake, by donating a kidney through the Alliance for Paired Kidney Donation she enabled him to move to the top of the transplant list in what is called a “paired exchange.” Within two weeks of her commiting to donate a kidney, Marianne and Lake were scheduled for their surgeries, a lightning fast result for something that can otherwise take years, even decades. Their mission now is to educate people about Chronic Kidney Disease and kidney donation by telling others about their experience. They took the time to sit down with Warrenton Lifestyle and tell us about it.
Lake, tell me about your illness. When were you diagnosed with Chronic Kidney Disease?
Lake: My primary care doctor caught it at stage 3 in 2015. CKD is such a “secret disease”; you hear a lot about cancer and heart disease, but not a lot about CKD. First couple of checks I didn’t pay much attention to it. I didn’t feel very different, I just didn’t have quite as much energy. But when it progresses to stage 4, you need to start dialysis. I did dialysis for almost a year before I connected with Marianne. Dialysis really affects your life, you have to do it three times a week, and it takes three and a half hours of just sitting in a lounge chair each time. It’s hard to maintain a normal schedule, to go to work, lead a normal life.
What are the statistics for CKD in the U.S.?
Lake: There are more than 600,000 cases of kidney disease in the nation. There are well over 100,000 people on the transplant waiting list, and some have been on there for years.
When did you start looking for a kidney transplant? What happened then?
Lake: Once you go on dialysis, you start looking for a kidney. My wife and other members of my family were not eligible to donate. The hardest part about this is that you have to be proactive, you can’t sit back and wait for a kidney to come to you. You have to get out there and advocate for yourself. It’s hard; you don’t really look any different, people don’t know you’re sick unless you tell them. I posted on social media, networked, and handed out flyers about my need for a kidney. You essentially have to go out and ask people “Hey, do you have an extra kidney I could use?” It’s very hard to be your own advocate. Then, through online research, I found Alliance for Paired Kidney Donation, an independent organization that uses a computer algorithm to pair kidney donors and recipients. That’s where Marianne came in.
Marianne, how did you become involved?
Marianne: I knew Lake from a couple of networking groups in Warrenton, and I saw his post on social media. I thought I wasn’t eligible for donating because I was on high blood pressure medication, and then a year later when I wasn’t taking it anymore, I saw another post, and emailed him. He gave me the contact information for MedStar Georgetown Transplant Institute. So I looked into it. The decision to donate a kidney was relatively easy for me. You can be perfectly healthy with a normal life expectancy with only one kidney. The risk of death by donating a kidney is 3 in 10,000, and I was willing to do that. I talked to the surgeons about that, and they said, “We’ve never had a death at this hospital.” There are other possible complications, but honestly, I don’t even remember them because I considered them so minimal.
So you were a match for Lake?
Marianne: No, I wasn’t. When I registered to become a donor with the Alliance for Paired Kidney Donation with Lake as my partner, it made him eligible to move to the top of the list for available kidneys through that organization. They have a computer algorithm that matches donors and recipients. A live donor kidney is preferable; it is much healthier and will last longer than a deceased donation.
How long did it take for you both to be paired with matches through this organization?
Lake: They told me it could take about three months, and I thought, “Well, that’s a lot better than waiting years,” but within a couple weeks of Marianne committing to donate, I was contacted with a match. We had our surgeries on the same day, August 2. I’ll never forget that day.
What happened then?
Marianne: Well, the first thing they do is put you through extensive medical testing. The medical team needs to be sure that your kidney is healthy, and they need to be sure that you are healthy enough so that donating a kidney is not any risk to you. They put you through every kind of test: blood tests, MRIs, chest x-rays, they check your surrounding organs, they check and see if you have any trace of cancer anywhere in your body which could impose a risk to both you and the recipient. If you do have any problem that will put you, or the recipient, at risk for any future health issue, they will rule you out. They have you talk to a social worker, to make sure you’re mentally ok and you know why you’re donating and there’s no outside pressure or financial incentive (it is illegal to be reimbursed for an organ donation). The surgeons come in and talk to you, and they’re very clear about what the process is and what the risks are. The kidney exchange coordinator is always there to answer any questions, and gets back to you right away. They are absolutely amazing. I was never afraid even once through the whole process.
So tell me about the surgeries and the recoveries.
Mariane: My surgery took about three hours. It was laparoscopic, and I’ve got four little puncture wounds. They removed the kidney through my old hysterectomy scar. Honestly, in my experience, it was never painful…it was uncomfortable, but not painful. They keep you in the hospital for 24 hours afterward, just because they want to watch you.
Lake: My surgery took about two and a half hours. They actually didn’t remove either of my kidneys, so they had to create a space for the extra kidney. It was pretty major surgery. My doctor said, “We had to open you up like a manhole cover and make room for another kidney in there.” Really, they just stuffed the new kidney in there and hooked it up and it started working right away. But I wasn’t in pain, they prescribed pain meds and I may have taken them a couple of times in the hospital, but not afterward. It was just sore, it wasn’t painful. We had surgery on Thursday, and I got out on Tuesday. I would have been released earlier, but they were trying to get all the medications approved through Medicare.
What about after the surgeries?
Lake: Right after the surgery, I went twice a week to Georgetown for a check, now I’m going once a week, and it will be less frequent as time goes on providing everything works out right. I take anti-rejection drugs, and I will for as long as I have the kidney. The main thing for me is to eat healthily, exercise, and drink water. I have to drink 3 litres of water a day. For the first few weeks, I couldn’t lift anything over 10 pounds. But they encouraged me to be up and to walk, so soon I was walking a couple miles a day. I felt better than I had in years. When you’re going through life in stage 4 CKD, it’s very taxing on your body. But now I do everything I was doing before the surgery and then some. But it’s so important to follow up with your doctors so you take the best care you can of the healthy kidney that someone was willing to give you.
Marianne: I was told to expect four to six weeks of recovery time, but it really didn’t take that long, I felt pretty good. I went back to work after a couple of weeks, but after a week or so I was in the office doing paperwork. It was a week before I could drive. There’s no indication that I have only one kidney, my prognosis and life expectancy are normal. My thought before the surgery was to be as healthy as I could so I could give the healthiest kidney I could give, and I’ve just maintained that lifestyle afterward, to keep my one kidney healthy. I eat well, exercise, and drink a lot of water.
So you would recommend Georgetown Transplant Institute?
Lake: I have to recommend Georgetown Transplant very highly. They are the fifth ranked transplant center in the country. That’s a pretty good rating. They do over 200 kidney transplants a year, as well as other organ transplants.
Marianne: Honestly, when you are going through the process, they are absolutely amazing there, the surgeons are very personable and warm. They’ll answer all your questions, address all your concerns, and they know you by name. The whole experience was incredible.
What was the cost of the procedures?
Lake: My Medicare and supplemental insurance covered the whole thing for both of us, except for copays for medication and that sort of thing.
Marianne: It didn’t cost me a thing. I think the most expensive thing for me was $5 a day for parking in Georgetown.
Marianne, are you glad you donated a kidney?
The thrill of being able to look someone in the face and know they’re the beneficiary of your donation, I mean, really, it’s so amazing and rewarding.
What do you hope that people learn from this article?
Lake: What we are trying to do is educate people about being a donor and about the paired exchange. There’s lots of people out there who need a kidney. You’ve got two, you only need one, and the risks of donating are minimal.
Marianne: And don’t rule yourself out as a donor if you have a history of some medical problems or are on medication. I actually didn’t need to wait until I was off blood pressure medication to donate…if I’d known that I could have saved Lake a year of dialysis. If you’re thinking about donating, go in for testing, and ask some questions. They will rule you out if you’re not healthy enough. What we want to do is remove the fear of donating organs in the hope that more people will choose to give. In my experience, it was not difficult; it was short, quick, and there wasn’t much pain. Honestly, it’s just a few weeks out of your life when you’re not as active as you usually are, so it’s worthwhile to take that time to help someone else.
What are the long-term risks of donation?
You will have a scar from the donor operation- the size and location of the scar will depend on the type of operation you have.
Some donors have reported long-term problems with pain, nerve damage, hernia or intestinal obstruction. These risks seem to be rare, but there are currently no national statistics on the frequency of these problems.
In addition, people with one kidney may be at a greater risk of high blood pressure, proteinuria, and reduced kidney function
You should discuss these risks with your transplant team, and ask for center-specific statistics related to these problems.
National Kidney Foundation, kidney.org