Written by Lisa and Michael Hehenberger

We have both donated a kidney to our sister / daughter Karin, in the years 2023 and 2009, respectively. Having donated and successfully recovered, we’d like to share our experience as well as proposing ways to increase the number of “live donors”, willing to help other patients in need. 

Background

Karin has struggled for many years with the dire consequences of Type I diabetes. She was diagnosed before her 17^th birthday and her diagnosis affected our family in significant ways. Karin and Lisa were very close growing up, playing together, traveling, playing tennis, and sharing an active family life. Little sister Anna, being 11 years younger than Karin (and 8 years younger than Lisa), was perhaps less affected, but still experienced that the mood had changed at home. Suddenly, Karin was no longer the person whose sisters and parents Ulla and Michael considered “invincible”. The diagnosis also coincided with a move to Paris where the family spent four years, from 1989 to 1993. Karin graduated from high school in Paris in 1991 and moved to Stockholm to study medicine. In 1993, Lisa joined her to study Economics. Karin & Lisa lived together and successfully earned their respective degrees. Karin’s goal was to get a deep understanding of the molecular mechanisms responsible for Type I Diabetes. She completed her MD Ph.D. at Karolinska, Stockholm. While her parents and little sister had moved to California, the two older sisters lived together in Sweden for a few years until they went their separate ways due to work, study, and eventually start their own families. Lisa got a Ph.D. in Venture Philanthropy and is now a Professor at ESADE, a Spanish business school. Karin & Lisa stayed connected and visited each other at least once a year although they lived in different countries, in the United States and Spain, respectively.

Karin’s Kidney Failure

In 2009, when Karin’s kidneys stopped functioning properly and she required dialysis or a transplant, her father Michael stepped up and volunteered to donate a kidney. Lisa was pregnant with her second child and living in Spain, but came over to New York to support the family for the surgery. Being pregnant, Lisa couldn’t be a donor but told Karin that if she ever needed a kidney again, she would be a candidate for another live donation.

Father Michael’s Donation in 2009

Being 63 years old, rigorous tests were needed to qualify father Michael for his kidney donation. As two complicated parallel surgeries are required, to extract a kidney and to transplant it into the recipient’s body, it is important to minimize all risks and to make sure the donor is healthy and that the kidney is in good enough shape to survive for many years in the recipient’s body. Two highly qualified surgeons have to team up to achieve this goal. Both patients recovered quickly. In fact, less than 2 months after his donation, father Michael participated in a hike to the Himalayan foothills at the border of India and Nepal, close to Darjeeling. As an avid runner, he measured his performance before and after his surgery: The decline in speed and endurance was about 9% about one month after surgery, not serious enough to give up his plan to see four of the world’s five highest peaks! He did the hike with four friends, all highly supportive. A highlight was his lighting of a candle in a Buddhist monastery. It was a memorable spiritual experience.

Sister Lisa’s Donation in 2023

While father Michael’s sole kidney was functioning very well, Karin’s transplanted kidney had suffered from the negative side effects caused by immunosuppressant drugs that have to be taken daily to avoid organ rejection. As a consequence, Karin was in need of a second transplant, 14 years after her first.  Lisa donated a kidney to her sister in April 2023. In what follows she has tried to provide as much detail as possible so that others can understand what it felt like (although each experience will be different). Donating a kidney is not easy, but it is a unique and wonderful opportunity to save someone’s life – with relatively low risks for the donor. Lisa’s bond to her big sister has grown stronger through this shared experience, but also by the fact that Karin has a part of her sister inside her body. Donating a kidney is an act of love that generates more and stronger love. That is how Lisa feels.

Pre-Screening, Tests, Planning, and Surgery (as told by Lisa)

In 2022, Karin told me that her kidney values were alarmingly poor and that she had to start preparing for a new transplant. What I had once promised was suddenly a reality. I knew her health had deteriorated over the past years but I think I was too scared to start informing myself properly about the process. I decided to come over from Barcelona (where I live) to New York in the summer of 2022 to help Karin get through a hip replacement surgery and take care of Karin’s daughter Liv. It was also a good opportunity to undergo all the screening tests to become a donor.

At this time, I was put in touch with the kidney transplant team at Columbia Presbyterian Hospital in New York City. I was assigned a coordinator who took care of booking all my appointments and informing me of the general process. Apart from a number of blood tests, urine tests, a CT-scan, EKG and X-rays I also met with a psychiatrist, a financial advisor, a social worker, my surgeon and a nephrologist. All the tests and meetings took almost a week. It was a tiring experience but it felt important to be fully informed – and of course the hospital needed all the information about me to assess my suitability as a donor and the match with my sister. My children (then 15 and 12 years old) were worried for me and I wanted to feel confident that I could provide them with all the information they needed so that I could reassure them.

The first meetings were with the coordinator, social worker, financial advisor and psychiatrist. They asked a lot of questions about my motivation for donating a kidney, informed me about the risks and wanted to understand if I was mentally stable and fit to be a donor. They highlighted the potential health problems that could result from the surgery in the short term and from complications over time, as well as financial risks if I would lose income as a consequence. They wanted to make sure that no one had pressured me into becoming a donor. I was not fully prepared for all these negative aspects and I felt quite down after these meetings. The meetings with the surgeon and the nephrologist were much more positive. They explained how being a donor of course involves risks, but that most donors live long and healthy lives. They also explained how I was an ideal donor because of my healthy lifestyle, my health condition and my age (47). By the time you reach my age most people have developed habits and routines that normally are life-lasting. Seemingly healthy younger donors might still change and become smokers, alcoholics, etc.  I felt more confident about the donation after these meetings. I also spoke to my dad about his experience and to another kidney donor who had donated her kidney to a stranger. I am in awe of people who decide to donate a kidney to someone they don’t know.

I also had an interesting conversation with a Jesuit priest who I consider to be a wise man and who has counseled me before. I told him about how I worried about my children. He said two things that stayed with me and were important in the process: He said that donating a kidney may involve risks but it is also an incredible opportunity to do good, to save my sister’s life. He also said that doing this act of kindness and generosity would be a wonderful example for my children. As a parent one tries to be a role model – by donating a kidney I could demonstrate my love for my sister and this could help bring my children closer together too. I think I was already convinced to go ahead with the donation, but this conversation and the subsequent reflection really changed my attitude towards the donation from sacrifice to gratitude.

A few weeks after the tests (in September 2022) we received the green light that the donation could proceed. We were a good match and I had fulfilled the necessary screening conditions. I would need to stay in the United States for a month for the procedure as I needed to be there at least a week before for additional tests and then at least two weeks after the surgery to heal and not to risk blood clots on the plane. Karin and I discussed potential timings considering her recovery from the hip replacement and my work schedule (I am a professor at a business school) and the children’s school holidays.

In February 2023, we finally were able to plan the transplant for April 2023. I had to prepare everything at home, cancel a class I was teaching and prepare the logistics at home so that the children would be well taken care of. I am divorced with full custody and my ex-husband agreed to be responsible for the children during my absence. Unfortunately, my son had surgery on his ankle in March so when I left him, he was still recovering from that.

I arrived in New York at the beginning of April and my sister was in very poor shape. She was admitted to hospital and had started dialysis. I wondered if we had waited too long. I had some additional blood and urine tests to do during the first few days. I caught a slight cold during those first days and it turned out to be COVID! I had avoided COVID during the pandemic so it felt like very unfortunate timing. My parents also got sick and we were confined in their house for a few days. We had to postpone the surgery another week to allow me to test negative. On the positive side, my sister was getting dialysis every other day and was starting to feel stronger.

When the date of the transplant finally arrived, we were all eager to put it behind us, but also worried. The psychiatrist had told me that I needed to separate the act of donating the kidney from the outcome (that the kidney would work for my sister). I found this difficult to do. My parents drove us to the hospital early in the morning and we were all nervous in anticipation of the event. I imagine that it must have been tough for my parents to send two of their (three) daughters off to surgery at the same time. At the hospital we registered and waited in the waiting hall. I was called first and went to the pre-operatory room with my dad. The nurses prepared me by taking my vitals and asking many questions. The surgeon and the anesthesiologists also stopped by to explain the procedure and prepare me. I then went to the operating room and I don’t remember anything else. I woke up about four hours later in the recovery room. The nurse told me that the first thing I said was: “Now I only have one kidney!”. As I was waking up, Dr. Mark Hardy who had founded the Columbia Presbyterian transplant unit, came to check on me. He told me that the kidney was already working for my sister – on the operating table! I was so happy I started crying and he cried too. It was a beautiful moment.

A few hours later I was sent up to my hospital room and my parents came to see me. I was tired but happy and did not experience pain yet. The day after was the worst – I had intense pain in my left shoulder and my stomach was bloated and full of gas. I felt terrible. It helped to start walking around and when they removed my catheter after 24 hours, I was more mobile. My sister and I were able to see each other and hang out. As we both felt better, we ended up having a positive bonding experience in hospital. The hospital staff was truly remarkable. The nurse team (especially nurse Annie) was very attentive and I felt totally cared for. I must admit I was a bit scared of leaving hospital and having to manage everything on my own. There was a comfort in the hospital routines and even the controlled food. When my dad picked me up from hospital on the third day I cried in the car and couldn’t stop crying when I came back to my parents’ house. Maybe it was just the relief that it was over.

Recovery Period

The surgery was laparoscopic meaning that the incision is small (just big enough to remove the kidney) with three other small incisions for the instruments they insert. They blow up your belly with gas so that they can operate without making a bigger cut. This means that it takes a while afterwards for all the gas to go away. It helps to walk around. I understood that the procedure also causes the lungs to compress which is why I found it difficult to breathe for at least a couple of weeks after the surgery. The shoulder pain was also due to the procedure. However, the advantage is that the surgical healing is faster.

After the surgery of course the donor feels much worse than before the surgery – while the transplant patient generally feels much better than before. Karin had a lot of energy and Lisa had very little. This may sound strange but makes sense since the donor has lost a kidney while the recipient has gained one. Walking a little more each day is very helpful. It helps to have a device that tracks your steps to keep your motivation going. Later, at home, the sisters had a pleasant recovery period at Karin’s house with her daughter Liv. It felt important to share the experience and to support each other. The sisters also received support from their parents. It helped to stay closely connected with family at home and speaking to them every day. Younger sister Anna also came to visit during the recovery, along with her baby boy Freddie. Supportive messages and calls from friends were helpful.

Once back home in Barcelona Lisa felt tired but also euphoric about the experience. She could walk around and felt like crying out of joy: Lisa felt grateful that everything went well and it somehow made her appreciate her loved ones and everything around her. Then it was tough to get back into a work routine as there was a pile of things to get on with, with somehow limited energy levels. In addition, the children also needed extra attention and care. The first two months went by in a haze and Lisa hardly had time to catch her breath. However, after two months, everything was starting to feel normal again. Lisa is back into her exercise routine. As her father, she measured her performance before and after the kidney donation: after a drop of about 10%, it took her 9 months to get back to her pre-op fitness level. Her renal parameters are also coming back to levels almost as strong as before.

Final Words About Kidney Donations

Donating a kidney is a big decision, but ultimately an incredibly positive experience. Both Michael and Lisa felt good about their donations. They have recovered nicely and do not experience a diminished quality of life. By sharing their respective stories, they hope that their experience will be helpful for others who are considering a donation. Donating a kidney to a family member should not be a very difficult decision: the Pros dominate the Cons.

Donating a kidney altruistically, to a stranger, is a much bigger deal. We believe that society should consider some kind of compensation for such an act, to increase the number of live donors. There are important ethical arguments that are made in such situations, but the benefits for society should outweigh arguments against. If financial compensations are unacceptable, there may be other ways to reward donors, perhaps by means of free healthcare benefits and free life insurance. Since survival rates are statistically unchanged after donation of a kidney, a free life insurance as guaranteed by government should not be an extra burden to other tax payers. Still, it would reassure donors.

As to deceased donors, Spain seems to have created a system that should be emulated by other countries. Kidneys received from live donors will be generally healthier and have a better chance to last a long time, but, compared to dialysis, organs from deceased donors are still a better choice.

As Easter passes, I reflect upon the concept of rebirth, as fantastic as it may seem, but today of all days it seems possible.

Is organ transplantation rebirth, a do-over, or is it simply the continuation of many years of battling chronic kidney disease with a degree of improvement?

The moment of the transplant, when the kidney starts working inside the body of the recipient, is nothing less than a miracle, only comparable to birth in medical terms. Based on my experience with three transplants, that euphoria continues for a time period after the procedure where gratitude and happiness are dominant while fear for the future is suppressed.

The recipient and the donor recover together in many cases, as it was in two of mine (father and sister) and create a bond stronger than they had before. That bond of course also includes complex feelings of fear for the donor’s future health, and fear of messing up the gifted kidney.

Over time, the new kidney settles in, and much of what the recipient could not do before is possible. In my case, I was able to work full time, travel, do sports, eat and drink freely and be happy since I was not so tired or in pain anymore.

However, over the long term, due to the lack of new and better immune suppressants to preserve the organ safely, the side effects and the complications become more serious and impact life in a major way. Headaches, tremors, hypertension, diabetes, gastrointestinal issues, infections, cancers, mental health problems such as anxiety and depression, as well as the decline of kidney function lead back to the situation prior to the transplant.

I have no illusions of living forever and even less of living without pain or suffering. It is part of life’s cycle to start healthy and new, and end old and broken.

All I am seeking is a little longer to enjoy the freedom and happiness. I savor the time before I have to go back to that broken state from where I was saved – not just once but twice.

Thank you Pappa and Lisa. And thank you to the family who decided to donate their daughter’s pancreas to me.

Welcome to LyfeTalks, a podcast that intimately explores the experiences of transplant recipients. Join us for raw and real discussions about getting a new organ and life afterward. Featuring a new guest each episode, this is your go-to podcast on everything transplant-related.

Alisha sits down with LaVise to discuss how she never lost hope even when life looked dim. LaVise received a kidney transplant in March 2023. She has faced many challenges throughout her journey. In 2023 she was told she wasn’t going to live to see 2024. It’s 2024 and she is thriving! Listen to her incredible story about how she persevered through the challenges and never gave up.

Jeanmarie sits down with Gabriel, a kidney/pancreas recipient and psychotherapist to discuss how to manage anxiety while waiting for a life-saving organ. Gabriel recently went through the process, waiting on the list himself for 2 years. Jeanmarie was diagnosed at 16 with Lupus. She had a kidney transplant at 24 years old. Although Jeanmarie has had 18 successful years with her living donor kidney, she is now on the wait list waiting for her second kidney. Listen to the conversation between Jeanmarie and Gabriel about the best ways to manage the rollercoaster of feelings that come with waiting on the transplant list.

As they transitioned into the transplant world, Alisha and Taiylor discovered a newfound purpose in their experiences. Rather than allowing their pain to define them, they transformed it into a driving force for positive change. Both recognized the importance of peer support and advocacy in helping others navigate the complex transplant journey.

Meet Alisha, who received back-to-back liver transplants in 2020.

Meet Alex who is navigating life as a one-time kidney transplant recipient.

 By Jeanmarie Ferguson

Without our medications, we cannot have a successful transplant journey. According to CVS Specialty Pharmacy, up to 20 percent of Kidney recipients are non-adherent to immunosuppressants. Once we have a transplant, anti-rejection medications are our new besties. We leave the hospital with so many new medications. How in the world can we possibly keep all of them organized? It can seem so overwhelming. 

I put together a few tips that will help you get and stay organized. Transplant centers generally give you a game plan when you leave the hospital. My transplant center even set up all my prescriptions with a specialty pharmacy after surgery. Although all that worked out really well in the beginning, and initially it is all you think about. But as you start to heal from the surgery and feel better with more energy, life really begins. You begin living a fantastic life. After all, that is the whole point of receiving a transplant. Work, family, and friends take over your life. Your quality of life is now the best it’s been in years. You are consumed with going out to restaurants, seeing friends, going on trips, work, and family. The transplant can become a distant memory.

However, your medications cannot take a backseat to your newfound freedom. You cannot ever forget to take your medications. They will forever be the most important thing you can do to ensure your transplant is successful. When I first started out with my transplant in 2006, apps weren’t a thing. With apps, I have found, things can be so much easier to keep track of—especially keeping our medications organized. 

I really love the Medisafe app. There are so many others available for free. Apple even has a health app. Sometimes it might seem silly to have an app to remind you to do something that you do every single day at the same time. But there are so many times that I am distracted with doing an activity. So, for me, it is beneficial. The apps are nice in also keeping a nice list of medications and doses. It’s easy to have an updated medication list for your doctor appointments. 

Another use of apps that I have found to be extremely useful is the apps for the pharmacy that are available. I have my personal favorite pharmacy where I live. The app allows me to order medications or ask them to submit to the doctor for a refill. It’s convenient to be able to see all my prescriptions in one app. I like to use just one pharmacy for everything because they can keep track of interactions. The pharmacist caught an interaction of medications once that my doctor did not. It’s always good to have checks and balances.

I personally love to use pill organizers. I have tried all sorts of them over the years. Amazon has so many great ones to choose from. You can find one that will fit exactly what will work for your needs the best.

Something I have learned over the years that cannot be stressed enough is if you need help with your medications, ask. Ask your doctor. Ask anyone on the transplant team for help. Ask the Social Worker. Ask your Coordinator. They have lots of resources to be able to help you. We all can go through hard times. We can lose a job and lose our health insurance or we can switch insurance and there is a gap in coverage. Lots of life challenges can hinder getting your medications. Many of the pharmaceutical companies offer copay cards that assist in the payment of the copay. Never be afraid or embarrassed to ask for help. The medications are so important to the success of the transplant and your life.  

“Don’t be afraid to lean on others when the weight of the world feels too heavy.” -Unknown

By Jeanmarie Ferguson

One of my favorite things to do is travel. I love experiencing new places and people. I made the mistake of being afraid to travel initially after my transplant in 2006. However, I realized that with a little planning and paying attention to important details, I could and should travel. Traveling sparks a light in me and I feel more alive than ever. After being given a beautiful gift of life, I should get out into the world and explore.

In the last 10 years, I have traveled to different states and cities throughout the United States. There are so many beautiful places here. But now I am ready to embark on my very first international trip. This is by far the most significant goal and dream I have ever had. I have been in love with Italy and Italian art since I was 15 years old. I am so excited and nervous. I have been waiting for years for the right time. I decided there was no better time than now. 

I started planning this trip years ago and then the pandemic happened. I postponed my dream once again. I allowed self-doubt to take over my thoughts, feeling that it wasn’t realistic to combine international travel and a transplant. The self-doubt was strong. 

While scrolling through Instagram, I found an account called TravelsWithTransplant.  I was so inspired by the tips Vanessa was providing for traveling with a transplant. It gave me a confidence boost to see all the magnificent places she has traveled with a transplant. That is when I decided I was going to make my dream a reality. 

I reached out to Vanessa and discussed the trip I was about to take. And I shared my plans to write about it on Transplantlyfe. I had so many questions for her to help ease my thoughts about traveling.

Vanessa is such an amazing transplant recipient with an inspiring story herself. 

Vanessa received her kidney transplant over 5 years ago, at age 33, as a result of progressive autosomal dominant polycystic kidney disease. As a career pilot, she has traveled extensively both pre and post-transplant. She credits a great deal of her success to budgeting extra time for her health, keeping plans flexible, and maintaining a positive attitude. She loves advocating travel solutions to the transplant and chronic illness communities who inspire her daily through their own life and travel journeys.

I asked her to share some of her top tips while traveling. She was so gracious in her response. I learned so many great things to make my trip go so much smoother and remove some of the anxiety about traveling so far from home. 

My biggest concern with traveling internationally is knowing when to take my medications once I am in a completely different country. Vanessa recommended using the Medisafe app. I have been using it for a few months now. I like the daily reminders to take my meds. Without our anti-rejection medications, we can’t be successful with our transplant. Of course, talk to your transplant team for advice on how to handle the medications if traveling to a different country or time zone. My team recommends if I take my anti-rejection medications at 9 am and 9 pm Pacific Time, I will take them at 6 pm and 6 am in say Italy. They are 9 hours ahead of us. So the time I would take the anti-rejection pills will be 9 am and 9 pm Pacific time no matter where I am in the world. 

Since our medications are the most important item that we take on our travels, they must always go in your carry-on bag. I also take an extra week of medications with me in case of any delays with getting back home.  

Another important tip is that we must drink plenty of water. I noticed through some of my travels, that travelers don’t realize you can take an empty water bottle with you through TSA. Almost every airport I have been in has an area where you can fill your water bottle for free. I usually do it right away and one more time before I board the plane. 

When I create my itinerary, I always allow for rest days. Sometimes after being on an airplane for a long period of time, with a time zone change, my body gets a bit upset. That is why I schedule those days to just rest at the hotel or wherever my accommodations are. It gives me a chance to enjoy the days that I have something awesome planned. And if I happen to feel just fine on a scheduled rest day, I will get out and explore. I think it’s important that we are gentle with our bodies. They’ve been through a lot. 

I hope these tips have been helpful. And I hope they give you the courage to get out and live your life as you want. With a transplant, we have been given a beautiful gift of freedom from constant wires and hospitals. It is always best to partner with your care teams before going on a trip. The care team is always there to answer any questions that you may have about any travel plans. 

Vanessa continues to inspire me with her wonderful travels! I asked her what her favorite places are that she’s traveled. She said: Cinque Terre, Italy, New Zealand (South Island), and Kyoto Japan. How cool are all those destinations? It opens up so many possibilities for us as transplant patients to get out into the world, taking safe precautions, of course. 

I have shared many tips throughout this article. If you have any questions for Vanessa as you decide if you might take a vacation soon, feel free to reach out to Vanessa with any questions. Make sure to give her a follow on Instagram @TravelsWithTransplant for more travel tips.

“Jobs fill your pocket, but adventures fill your soul.” – Jamie Lyn Beatty