On the generous gift of life
Bird: Take each day at a time and you always end up stronger on the other side of things.
Narrator: In this episode of Mayo Clinic Employee Experiences, you will hear Heather, a nurse transplant coordinator, share her journey of needing a liver transplant due to a rare blood disorder. Mollie, a clinical research coordinator, shares her perspective of being a kidney donor to help a friend in need.
Bird: My transplant journey began when I was 15. I was diagnosed with a rare blood disorder — hepatic porphyria — that could eventually lead to liver failure and the potential need for a liver transplant. At 23, I was diagnosed with stage 4 cirrhosis of the liver and told that a liver transplant would be necessary. Fast forward a year, I was in and out of the local hospitals and was eventually airlifted to Mayo Clinic Transplant Center. I underwent a liver transplant evaluation. I met with different hepatologists, social workers, therapists and dietitians, and had a full workup just to make sure that I would be a good liver transplant candidate. After a brief wait on the liver transplant list, I received the phone call that a liver was found for me and that I'd be receiving a liver transplant.
Luhman: My journey to being a living kidney donor started about 20 years ago when I took a job in the Transplant Center with the Kidney and Pancreas Program. I became fascinated with all aspects of the transplant journey our donors and recipients go on. I felt a natural feeling that if the opportunity ever came for me to be a kidney donor, I would certainly step forward to become one. That journey transpired when I had a friend who posted on Facebook that he was in need of a kidney. I filled out a simple form and began the process, which was probably about a month's process from start to finish. I found out that I was an approved donor.
All my friends and colleagues in the Transplant Center walked me through the process. They were heavily involved in answering all my questions and guiding me through the event. It was a really neat experience because I didn't tell my friend that I had stepped up to be a kidney donor. Five people had stepped forward. He knew four of the five people who were going to be potential donors, but he didn't know I was one of them. I believe three of them got denied right away. Ultimately, I was chosen to be his kidney donor. It was a great process. It was in November. Our anniversary is coming up, and we usually celebrate together.
Bird: During my transplant journey, I learned how resilient I could be. It's not something that many 24-year-olds have to face. It was a difficult journey. I felt really sick at times. There were times when I wanted to give up prior to receiving the liver transplant — the gift that I was given. Following the transplant, I felt so much better. It did take some time for me to feel 100%, building up strength, building up nutrition that was lacking for so many months prior to the transplant. Just all the education, all the learning that takes place when you receive a transplant.
I found out through the whole process how strong the support system was that I had. I had friends. I had family. My mom and dad and my fiance at the time — now my husband —were my caregivers. I had friends who completed a fundraiser on my behalf and were able to help raise some money for the medical bills that proceeded or followed the transplant. Being young, you think you're a strong person who can take on anything. I don't know that I realized how truly sick and ill I was until I was airlifted here, and the doctors told me that I would need a transplant.
I feel emotional looking back after everything that I've gone through. Now I'm 13 1/2 years out from transplant, and it's quite the journey to have gone through. But I enjoy being able to share with patients who are going through a transplant and have had to go through a transplant to take each day at a time. You always end up stronger on the other side of things.
Luhman: I learned about myself that when I make a decision, I make a decision. I felt incredibly comfortable through the entire evaluation process, right up to the operating room, that I was super comfortable about my decision. Other people were kind of questioning whether I was making the right decision. Some of the questions that came up were, "What if your girls need a kidney? You're not going to be able to donate a kidney to them." Or, I had people say, "Let one of his family members step up." Those weren't even considerations I had. I just knew that I wanted to help someone if I could. And with all of the medical care that I had been receiving, it was going to be a healthy decision for the recipient and a healthy decision for me.
I've never looked back on the decision of being a donor. I hear a lot of cool things that people say, "That's amazing. That's so cool that you did it." But I think most people, if they had the opportunity to help someone in this capacity, would do it without a second thought. I also think that people who are put into these opportunities to become kidney donors frequently have a long list of other opportunities that they have taken advantage of to do good in society, like being blood donors and volunteering frequently. This was a natural progression to keep doing good for someone else.
Bird: Receiving a liver transplant played a part in my current career choice. When I had my transplant, I decided to go to nursing school. Throughout that journey, I wanted to quit many times. But, through perseverance, I was able to complete my nursing degree. While I was in school, I would come back to Mayo Clinic for annual transplant evaluations. My primary hepatologist encouraged me to come work at Mayo Clinic. It was something that I always had thought about for the future. I didn't think it would be something I'd be able to do right out of college. During the spring semester of my senior year, I applied for a position at Mayo Clinic on the Eisenberg 10-2 inpatient Liver, Kidney and Pancreas unit. I was offered a position and gladly accepted it. I got to take care of patients who were undergoing transplant evaluations, had liver transplants, were there for post-op care, or those who had a transplant previously and needed to come back for more care.
I remember the first patient who broke down and became quite tearful when I shared my story with him. He told me that I was an angel sent here to help him through this process. That really warmed my heart and made it clear I was where I needed to be in my career, helping others who were undergoing a transplant process.
After a little over a year of working on the inpatient side, I decided I want to transition over to the clinic. I was curious about patients who received organ transplants — what they did in their lives moving forward, what opportunities they had because they received this second lease on life. I transitioned to the inpatient side of Transplant. I'm a post-liver nurse transplant care coordinator. I'm able to help other patients who had liver transplants.
Luhman: Being a member of the Transplant Center previous to donating a kidney, I knew that I was in the absolute best hands. I knew everyone who was a part of my care team. I trusted everybody. They made the process immensely easy. They rolled out the red carpet in a way that I know they do for all patients. I never felt like I was being treated differently than anyone else, and I absolutely love that. Everyone from the outpatient clinic to the inpatient hospital service to everyone in the operating room — so many of those people were my friends and colleagues. Besides just being one of their co-workers, suddenly I was at the mercy of their care. I felt a huge sense of peace and relief that I was going to be in the best of hands through the journey, and I absolutely enjoyed that part of it.
Bird: I want people to know that anyone can sign up to be an organ donor. It's a great gift that you're able to give others once you are no longer here — to give them a second chance. It's an easy check when you go to get your driver's license. You never know whose life you might change by that act of becoming an organ donor.
Luhman: Certainly, registering to be an organ donor is as easy as going to registerme.org and designating your wish. Also, just being aware through a variety of tools — whether it's social media, your friend circles — if someone is in need, there are a lot of tools and resources available to help you make an informed decision if donating a kidney or part of your liver is right for you. It's not for everyone. It's a major surgery. It does take several weeks to recover. And while the recovery for being an organ donor is relatively easy, it does take some time for your body to heal.
Bird: I wouldn't be where I am in life right now if it wasn't for the gift that I was given 13 years ago from my organ donor and his family. I try to take each day as a gift. And to help others do what I can to spread the word about organ donation and what it can bring to someone's life — that second chance.
Luhman: I've loved watching the renewed health of my recipient. I loved seeing his family reunite and not have to worry about being on dialysis or attending dialysis every few days. I think it's a small gesture I was able to do to help him and his family. It's something I'll always look back on as a positive experience.
Narrator: Reflect on this conversation and consider if organ, blood, bone marrow or another type of donation is right for you to help someone in need.