Kidney Transplant Patient Story – with Kevin Howell

In the second episode of the podcast series, “Understanding Organ Transplant,” Dr. Ron Falk welcomes Kevin Howell, who is a kidney transplant recipient. Kevin shares his story about getting sick and the challenges he had accepting reality. He talks about being on dialysis while working full-time, finding an unexpected kidney donor, and his recovery to health.

 

 

Ron Falk: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients focused on organ transplant, and today we will get to hear from a patient who has had a kidney transplant, and what that experience was like.

We welcome Kevin Howell. Kevin received a kidney transplant in 2016. Kevin is a UNC employee, and you might be interested to know that he holds a very esteemed position in the UNC system, as senior vice president for external affairs. So today I’ll get to ask him about what it was like to get sick, what it was like to get a transplant, what recovery was like, and how things are going today. Welcome, Kevin.

Kevin Howell: Thank you, Dr. Falk.

A State of Denial

Falk: Let’s start by reliving what it was like when you were really a healthy human who had no clue you had any kind of disease whatsoever. How long ago was that?

Howell: It was October 30, 2015 when my kidneys began to fail. I was with a friend and I made a phone call to you, Dr. Falk. The best counsel that I received was to drive to UNC Chapel Hill hospital as soon as possible. I never believed that my kidneys would actually go out. I’ve always been very active, working out, doing hot yoga, running around the General Assembly—it never really dawned upon me that this could actually happen to me.

Falk: In reality though, Kevin, you had been ill before October of 2015. It was just that at that point in time, that you really were getting ill.

Howell: Yes, sir, that is correct. I was in a state of denial. I thought because I was eating right, going to church, working out, I thought that whatever was going on in my body, that I could actually defeat it, and I was wrong. It took me a while to get around to the point to admitting I was wrong, even though I was informed that this would happen.

Falk: What’s interesting is that kidney disease is such a silent disease. It’s measured by a blood test and you can’t feel your kidneys failing because they can’t scream. If your heart’s not getting blood, it’s sending pain signals. If the kidney isn’t doing well, there are no messages at all except for a blood test. It comes as no surprise that you thought you were doing well.

Howell: Yes, and the symptoms began to come, and again, being the worst patient probably ever, I ignored those until the end. In fact, I had symptoms like regurgitating, being tired, I would often say, “What did I eat today? Did I eat something wrong?” I was looking for those excuses to say that I was going to be all right. I think that brings me back to anytime that a patient or someone is experiencing pain or your body is doing something differently, the best counsel or advice I could give someone is get it checked out as soon as possible. But I really thought that somehow, I could defeat it or it was just going to change around, which is ignorance, a big ignorance on my part that could have cost my life.

Falk: Is there a stigma of having a kidney disease? Does one feel embarrassed about saying, “I have kidney disease”? People aren’t embarrassed to say they have breast cancer.

Howell: By all means, Dr. Falk, and I think that was part of what I was experiencing. Often times you look internal, and you ask yourself the question, “What did I do wrong? Why is this happening to me?” Whether it’s your liver, your kidney, or whatever organ, perhaps you’re portrayed as a drug addict, an alcoholic, or just you feel the blame that, “Perhaps I did something terribly wrong,” that this is the perception people have of you, which is not the case at all.

Falk: It’s not the case, it’s completely inaccurate. The vast majority of kidney diseases are from high blood pressure, diabetes, or an autoimmune condition, and if we knew how to stop those diseases from hurting the kidney, we wouldn’t have the huge number of patients with chronic kidney disease. There’s nothing one can do, but still there is this stigma that has never really completely vanished.

Howell: It’s amazing, because when you look at kidneys, it’s what you said, exactly. Is there any difference from having cancer—breast cancer or prostate? We look at those somewhat differently and I don’t know why that is, but I do think that for me, maybe I just felt invincible. I felt like nothing could happen to me. Everything in my life—I just celebrated a birthday, everything in my life was just going perfectly, and I just knew this was something I would get over or surely, it’s not happening to me.

Falk: So, in October of 2015, finally you did come to the hospital because a good friend of yours, almost tied you down to make you come, and even then, it was in the hall of the hospital, not in some other organized place. You and your friend had this interesting discussion of, “Hey, Kevin, you have to wake up.”

Howell: Yes, I will never forget that part of my journey in life. My good friend, Andy Willis, and yourself, we were at the hospital and you had reviewed my tests, and I will remember that you said my kidneys have failed. I immediately looked at you and said, “Both of them?” and you said, “Yes.” That’s when reality totally set in for me. I began to think about my family, my two girls, my wife, what my life would look like, what I would do now. I love what I did in terms of lobbying the members of the General Assembly. It was a wake-up call indeed.

Falk: What’s interesting still, in 2017, there are so many people who arrive and need emergent dialysis because either they’d never been told they had kidney disease, or in fact they’d been told and never really wanted to accept that blood test reality. What advice would you give to someone listening, don’t get to the point of really becoming ill?

Howell: I would simply say, it’s not worth it. If you are sick, go to the doctor ASAP. I would also advise make sure that you also feel comfortable with the medical attention you are receiving. I would say that for me, after my kidney transplant, I’ve advised many people to come to Chapel Hill. You want to make sure that you take care of it as soon as possible. Your life is too valuable, too precious, to do what I did. I also said about dialysis, it was a word I really didn’t know. I made a lot of mistakes with my medical attention—that’s what makes me pretty good at this now, because I can tell people what not to do.

I’m blessed, I’m lucky, I’m glad that I really did get a second chance, when I think about it. Coming over today, walking through the hospital, creatinine at 28, and been told you have kidney failure, that’s pretty harsh to hear. Even though the warning signs, you had shared with me beforehand that exactly this would happen, but you really learn tremendously much about the next steps, paying attention once that message is delivered to you. It’s amazing, the whole process—going from where I went, healthy one day to knowing that I need help. It’s a stage that I’ve never been in in my life. I’m always the person to solve issues, solve problems for so many other people, and now the situation is reversed: it’s me calling out for help.

Falk: So, where you got a lot of help also was from your family, especially from your wonderful wife.

Howell: Aleta is awesome, and I did get a lot of assistance even when I heard those words that my kidneys had failed me, I didn’t know what to do. I didn’t know exactly what that meant. Hearing the word “dialysis” instead of “live-alysis” is what I’d like to change it to.

When I was first told of the possibility of going on dialysis, I frowned at that. I didn’t want to be that person who would always be hooked up to a machine, and I actually told my wife and my family that if it was time for me to go, it was time for me to go. But I really didn’t know what I was talking about at all. I think back at that. Sometimes you have to take self out of the equation and actually listen to what your doctors, and the nurses, and experts are saying.

Falk: Or your wife…

Howell: And my wife, that’s exactly right!

Juggling Dialysis & Career

Falk: You worked though, straight through this whole transition from being told you needed to have kidney replacement therapy, starting some dialysis, and then working on getting a transplant. How’d you pull that off?

Howell: That’s actually part of what was the best thing that happened to me, was going to dialysis—one of the best things, and I say this for a reason. Five o’clock in the morning—I was blessed to be able to be near my dialysis center—it was about five minutes from my house. About four-thirty every morning I would wake up, and five o’clock I’d be at the dialysis center and I wanted to something differently. I wanted to go into dialysis and not just go back to bed and sleep. I would start working early on, I would read, I read a lot of information. I looked at this as a job. I would journal and would talk about all of these different experiences—things that I did in the hospital, all of the individuals who were coming in and out of the hospital room, and how they were helping me and assisting me. They were people who I never knew, people if I walked by them on the street wouldn’t even speak to them perhaps, but now I’m depending on them for every single thing—for my existence. I did the same thing while I was on dialysis. My days were Tuesdays, Thursdays, Saturdays, from about five o’clock in the morning until about eight-thirty, nine o’clock. Then I would go to work every day.

You look around the room and see so many other patients. You feel like you’re not alone, because everyone else in the room, they’re going through the same things that you’re going through.

Falk: It’s a community of fellow travelers.

Howell: It is, and we need to actually talk about kidney failure, renal failure a lot more than we have in the past. I’ve been surprised at the number of people, after they found out what happened to me, I received a number of phone calls, I received from friends and others that they too are going through the same things, and I would hate for them to make the same mistakes I made previously.

Finding a Kidney Donor

Falk: Talk to me about the process of finding a kidney donor. You’re on dialysis, we needed to get you a donor—there are two types, as we talked about in a previous podcast. Deceased donors, and living donors. You were lucky to find a living donor. How did you find that person, or did they find you?

Howell: I think they found me! From day one, it’s a faith walk. When you think about it you’re actually asking someone for part of their body. You’re asking someone,“This is my blood type, can I have your kidney?” Now that’s a tall order to ask someone! I was blessed, again, with my wife Aleta and my friend Andy Willis. This is the part where my goal was to concentrate on recovery and doing what I was supposed to do. Aleta and Andy, who I’ve known for a number of years, they began with the Internet, sending out emails and updating people. I think a lot of people inquired about it, they gave them an opportunity to learn more about kidney disease. I was very fortunate to have someone right in my office, Lindsay Recchie, who came forward and said, “I think I’m going to give you my kidney.”

Falk: It’s the most wonderful gift anybody can possibly give.

Howell: It is an awesome gift. I often tease with Lindsay, “If I would have known that you were going to give me your kidney, I would at least have taken you out to lunch or sent you flowers!”—but you best believe that I’ve done those things now. You have to ask the question, for yourself, are you willing to help someone else in need? You ought to be willing to help someone else in need if you’re going to on the receiving end. When Lindsay first started talking about it, I didn’t know she was going to be a match. All of this is done in a confidential way. When other individuals were talking about, saying, “I’m going to at least try,” I was blown away. I was just blown away by kindness, love, of people just willing to do something in order to save my life.

I call Lindsay every Tuesday still, every week. When I started that, Lindsay asked, “Well, how long are we going to do this?” I said, “However long I’m living, you can expect a call.” Tuesday was the day of my surgery. When you think about that someone is willing to take a part of their body to have an operation to go through that process for you, that’s a lot.

Falk: She’s doing well now.

Howell: She’s doing great. I think she’s enjoyed telling others about what it means to be a donor, and I think that’s so important.

Falk: Otherwise people wait for a long time on lists for a deceased organ. A living donor, especially what’s called an altruistic donor like Lindsay, is just fantastic.

Howell: Almost every time someone asks me about this, it brings tears to my eyes. You’re left with this feeling of being grateful, being thankful, because there are a lot of people on dialysis today. Perhaps if someone would step forward and at least get checked. You lose nothing by getting checked for a loved one or for a friend. To have someone I didn’t expect—she doesn’t look like me, she’s a woman—so somebody in your office but you never would have expected that person would be the one to offer their kidney is amazing to me. It just goes to show that you never know the people around you, how you might be an asset or they might be an asset to help save their life. It behooves us to treat everyone with respect and kindness, really because you don’t know.

Recovering and Returning to Health

Falk: So, your health right now is spectacular. You’re working out, you’re on the treadmill, yoga, and you’re working full-bore. How long did it take to get back to actually better health than when you started?

Howell: It did not take long at all. I’m reminded that I have more energy today than I did before kidney failure. I’m in better shape, I have more energy, I have a purpose in living now. When you’ve been given a second chance at life, when so many other people could have been given that chance, but it’s you now.

I think the important thing is to always follow doctor’s orders. They give you a list of things of what you should do, how much you can lift. You really have to pay attention. I was telling a friend of mine that those who do kidney transplants and work in this field, they’ve been doing this for a reason. They are the experts. Try not to deviate from what they suggest. If you stay on track and listen to the directions, it’s a lot better than not doing that. I’ve been pretty blessed and lucky with my treatment plan.

Falk: What message would you share with somebody who is facing the possibility of needing a transplant?

Howell: Not to be afraid. If you don’t feel comfortable in asking someone for a kidney, to have people around you who can do that job for you. You would be surprised of just the energy, the surgery, the expertise that they do have here at UNC Chapel Hill hospitals.

If you’re on dialysis, I would say pay attention. They say, “Here are the foods you can’t eat, here’s how much liquid you should have”—don’t deviate, it’s not worth it.

And don’t give up. So many times, it’s easy with kidney failure for people, for myself, to give up. I had one of the best pity parties I could have, until my wife sent an email to me that said that she didn’t think she married a quitter. Often times you find yourselves in a situation like this that you would never have imagined in your life, but when you do, you have to keep people around you to encourage you, and life you up when you have nothing left on the inside. But it’s a journey. Once you receive a kidney transplant, our job now is what we’re doing today, to tell people about your experience to encourage them. We are a community of those who have gone through something similar, and it’s important we bring along others who are experiencing the same thing.

Falk: It’s really important, all of the things you just said. I just want to stress the message that sometimes it’s very important for loved ones and friends to help ask that question, because it is very hard to ask, “Will you please give me your right kidney?” It’s easier if your spouse or your loved one or colleague can reach out for you.

Howell: You’d be surprised—I would say don’t just look in your circle. If there’s one takeaway, it’s easy to look at your group of friends, your family members, but I think the amazing thing about this is there are so many people who know you every day, you’d be surprised what they’re willing to do—to risk their bodies and injury to them. It leaves me with a feeling that I cannot even express with words, but I do believe it’s something that once you receive it, it’s important that you deliver the message to other people. It leaves you grateful and thankful for the second chance at life.

Falk: Kevin, you are such an inspiring figure. Thank you for sharing your story with us.

Howell: Thank you, Dr. Falk for having me, and thank you for saving my life, my friend.

Falk: Thanks.

Thanks so much to our listeners for tuning in. In our next episode, we’ll discuss liver transplant with Dr. Skip Hayashi and Dr. David Gerber. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook.

 

 

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