Waiting for a lung transplant: One CF patient’s experience

Lung transplantation can be the last hope and treatment option for cystic fibrosis (CF) patients who would otherwise die after their lungs have been destroyed by disease and bacteria. Each patient must decide for or against transplantation based on their individual situation. In this interview, a person living with CF, Reiner Heske, describes his experience coming to a decision and then waiting for a lung transplant.

PARI-Blog: Reiner, you received a new lung in 2013. Why?

Reiner Heske: I live with the hereditary disease cystic fibrosis (CF). It is the most common hereditary metabolic disorder. Most severely affected are the lungs, where mucus builds up and which are damaged over time by lung infections. So, by the time I turned 18, playing sports or doing similar activities were out of the question. My stamina steadily worsened. Starting when I was 31 years old, I needed oxygen at night. In 2012, I had to undergo four difficult operations on my pancreas and intestines and there were complications. Mentally and physically I felt it was the end. It was pretty much a miracle that I survived it. And then at the end of 2012 I got two bad lung infections on top of everything else. That knocked out the last area of my lungs that was still functioning. From then on I needed 6 litres of supplemental oxygen, which is a lot, 24 hours a day. I couldn't even take a shower without supplemental oxygen. My FEV1 had been only around 35% for years, and leading up to the transplant it was below 30%. It was time for me to decide for or against a lung transplant.

PARI-Blog: Was it difficult for you to decide to get a transplant? After all, lung transplantation is major surgery. And on top of that, the survival rates are quite sobering when one considers that, for example, only 53% of people receiving lung transplants are still alive after 5 years and only 32% after 10 years.

Reiner Heske: It was not a difficult decision for me. Even as a teenager it was clear to me that I would do it, if it came to that. I have always wanted to know what it feels like to be able to breathe normally. 2012 was the hardest year of my life. My quality of life before the transplant was extremely restricted and naturally I didn’t know how long I would even be able to stay alive in that state. Maybe a year? Another argument for getting a lung transplant was wanting to outlive my parents and to be able to be there for them when they get older and are not as physically able. I have also been quite happy to be alive in general. At the time, I just wanted to keep on living. The transplant was my only chance. I am very grateful to my donor that he or she decided to be an organ donor while alive.

PARI-Blog: How did you prepare yourself for the lung transplant?

Reiner Heske: I didn’t actually do very much. I went to the informed consent consultation and that was basically it. During this consultation the facts and limitations that one can expect after a transplant were explained in stark detail. I tried to occupy myself mentally with only what was necessary and to worry about it as little as possible, so I could approach the whole thing in a relaxed way. Of course I packed a bag for the hospital and was always available for the call. And of course I was keen to stay as physically fit as possible for the transplant. You never know how long you’ll have to wait for an organ. So I used my nebuliser quite a lot, you could even say I was an “inhalation junkie”. Whenever I could, I also went on short walks.

PARI-Blog: You say you were an “inhalation junkie”. What do you mean by that?

Reiner Heske: Yes. That’s actually how I would describe what I was like then (laughs). I had always used my nebuliser at least two hours a day, even more when I had an infection. Using a nebuliser was the only thing that helped me. I always had a lot of very tough mucus in my lungs. The only way I could get it up out of my lungs, and thus cough less and breathe better, was using a nebuliser combined with autogenic drainage (a breathing technique to mobilise mucus; editor’s note). I also took to heart the saying “Where there is no mucus, there are no germs” (laughs), to keep my lungs as clear as possible. For one, it was the only thing that helped me to get some air during the day. For another, I was able to avoid the odd intravenous antibiotic therapy.

PARI-Blog: How was the waiting period from getting on the transplant list to the call that there was a lung that was a match for you?

Reiner Heske: For me, the waiting time was unusually short. That might be due to the fact that I have the most common blood type. And I probably just got lucky. The first call from the transplant centre came at 7 a.m. one day after I learned that I was on the list. I found out I was on the list by chance when I rang the centre to give them my new address. After the first call, it quickly became clear that it was a false alarm. The donated organ was not fit for transplantation. After this first call, my nervousness went through the roof. I get even more keyed up every time the telephone rang. After a waiting period of about two weeks I got another call one morning saying a lung was there for me. I had approximately one hour’s time at home to get ready and to say goodbye to my family. Then I was picked up by an ambulance and driven to the transplant centre, 300 kilometres away. On the way there, I had time to call my friends and co-workers to tell them what was happening.I told them I would see them again in my new life. I was relatively calm until just before the operation. I was even quite looking forward to the operation because my quality of life was really terrible with my health the way it was at that point. I consciously did not dwell on the risks and consequences, and instead concentrated on and got excited about my life with a soon-to-be-functioning lung. And I can tell you here today, this excitement was absolutely justified. While it is very unfortunate that someone also died on this day, this wonderful person made it possible for me and probably other patients to extend our lives thanks to his or her decision to be an organ donor. I cannot stress often enough how grateful I am to my donor and his loved ones for this.


PARI-Blog: Reiner, thank very much for talking with us. 


About Reiner Heske:

Reiner Heske was born in 1969 with cystic fibrosis, a hereditary disease, and given a lung transplant in 2013. After his transplant, he became physically active and took part in sporting events to raise awareness about cystic fibrosis and the importance of organ donation. In addition to this activism, he organises fundraising runs for cystic fibrosis. For more info on the Muko fundraising runs and the topic of organ transplantation, go to: https://www.reinerheske-laufendhelfen.de


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An article written by the PARI BLOG editorial team.

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