Experiences after transplantation: my life with a donor lung

Reiner Heske lives with cystic fibrosis (CF). The hereditary disease destroyed his lungs over time. Therefore Reiner Heske received a donor lung in 2013. After the transplant, his life changed radically – mainly for the better. But a transplanted organ also casts a shadow on the new life. In this interview, Reiner Heske shares his experience of life after transplantation and a donor lung.

Rainer Heske began exercising immediately after rehab – with success

PARI Blog: Reiner, in 2013 you received a donor lung. What do you know about the surgery?

Reiner Heske: A lung transplant is a pretty martial procedure, where the chest is cut open and the ribs are spread apart. My surgery lasted six hours. First one, then the other lung was exchanged. In my case, the lungs were so badly fused that the lungs could not simply be removed, but rather had to be peeled out. This caused severe post-transplant bleeding. I also needed several units of blood and blood plasma after the surgery, as I was close to unconsciousness several times.

PARI Blog: How did you experience waking up from anesthesia after surgery?

Two weeks after the transplant: all drains removed, scars slowly healing, lung function rapidly improving

Reiner HeskeFirst of all I was very happy that I was still alive. Waking up was very joyful. To my surprise, I was greeted by a very nice cystic fibrosis doctor whom I knew from before and who had obviously moved to the transplant clinic. I had not seen them for years. This was a nice coincidence. In the recovery room, I was still mentally pretty woozy from the anesthesia, but physically still relatively fit. I had the tube of artificial respiration in my throat, but wanted to be able to speak again as quickly as possible. With a tube in my throat it is not possible. Therefore I wrote small messages on paper slips, in order to make myself understandable. Fortunately, the tube was removed quickly. In the recovery room, an ultrasound was also performed at the sites or. made the scars where the donor lung had been sewn to the trachea. Following the surgery, I was in the hospital for three weeks on a partial-intensity basis. It was actually quite a stressful time. I shared the room with two other patients. Sleep was out of the question during this time, as we were all connected to monitoring monitors that beeped constantly.

PARI Blog: The first breath with a new lung – how did it feel?? Surely great, or?

Reiner Heske: Actually not yet. I had the feeling that I couldn’t take a full breath right away. Just breathing in was very difficult at first, so I would have put a tension belt around my rib cage blocking the breathing movement. I had pain in my chest and did not dare to breathe in beyond this blockage. It felt like it was tearing apart my chest when I took a deep breath. Due to decades of severe lung disease, a very stiff and pronounced fassthorax had developed. That’s why my chest was so immobile. This inflexible rib cage now met a lung that was in top shape. My chest was used to my old lungs with a very low lung volume of about 0.9 liters FEV1. With my donor lung I managed 3.7 liters at FEV1 today. That is an increase to over 300 percent. The body first had to adjust and get used to the performance of the donor lung – obviously painful in the beginning. In addition, after the operation I still had drains on the left and right side of my chest, so that the wound secretion could drain off. This didn’t help my well-being either.

PARI Blog: When was the first time you were able to breathe easy after your transplant??

Reiner Heske: I had oxygen for two to three days after the transplantation. To be honest, I was afraid of the moment when I had to take the tube out of my nose. After all, the tube had been with me for years, and had ensured my survival. I was hooked up to the oxygen meter and could see that my saturation was 94 to 95 percent even without oxygen supply. Sensational. I was blown away. Because my donor lung hadn’t even fully developed yet. This meant that saturation would continue to increase in the medium term. I was able to breathe deeply and freely only three to four weeks after the transplantation. I had the feeling of a restricted chest when breathing for at least one to one and a half years. I assume that the sport helped me to get rid of the feeling of a constricted chest relatively quickly.

PARI Blog: Did you have to do any specific breathing therapies or measures after transplantation?

Reiner Heske: I use various breathing aids. On the one hand, there were devices with which I could train and strengthen my breathing. On the other hand I had PARI PEP systems with me, which I already knew from the CF therapy. At the beginning there was still wound secretion in the lungs. For example, the mucosa detached itself from the donor. My lungs formed a new mucosa over it. To better mobilize this clumped, old mucosa and secretion, I inhaled twice a day with saline and used the PEP systems. I also had to inhale an antifungal agent to prevent fungal colonization of the lungs. In addition, I had many bronchoscopies in the first weeks after the transplant, where I was checked again and again, and the lungs were cleaned of wound secretions.

PARI Blog: Before the transplant, you had to inhale a lot for the lungs. How does it look now?

Reiner Heske: That is correct. Before the transplant, there was never a day when I left the house or went to bed without inhalation therapy. Now I don’t have to inhale for the lungs anymore. In the morning I get up, have breakfast and go for a run or get on my bike. The gain in quality of life is indescribable.

PARI Blog: So are you now cured of cystic fibrosis?

Sporting challenges such as marathons or bicycle races were unthinkable before the transplantation. Now Reiner enjoys being able to compete with healthy people in sports

Rainer HeskeI feel like a changed person. I no longer have shortness of breath, I can perform well. Immediately after rehab, I started doing sports and quickly realized that I felt like exercising. The same year as the transplant, I covered 500 kilometers walking. Then in January 2014 I start with running intervals – running and walking always in alternation. In April 2014, I was already able to complete a 10-kilometer run with 30 fellow runners to raise awareness about organ donation and cystic fibrosis. After the run, I felt like a little king. I suddenly had a lot of fun racing with healthy people. Even today, I still can’t put this feeling of happiness into words.

But cured? No, I am not cured. A transplant is not a cure, but a therapy. I still have the disease. Of course, the classic cystic fibrosis symptoms are no longer present in the lungs, but the disease is still present in the rest of the body. For example, I still have to take enzymes with meals and the intestines continue to cause problems. It is also still a challenge for me to maintain my weight, especially when I do a lot of sports. A problem that many CF patients know. I also have the feeling that cystic fibrosis is now looking for other ways. I used to have no problems with nasal sinuses. Now my nasal cavities are often noticeable.

PARI Blog: How do sinus problems shape up and what do you do about them??

Reiner Heske: Secretion accumulates in the nasal cavities, which hinders my breathing. Borken form, which disturb additionally. In addition, there is a risk that the bacterium Pseudomonas aeruginosa will continue to spread in the nasal secretions. That’s why I clean my nose daily by nasal irrigation. On a four-week on-off cycle, I do an antibiotic inhalation with the PARI Sinus for the nose to reduce germs. The current nasal inhalation therapy takes much less time than the inhalation therapy for the lungs before the transplantation.

PARI Blog: Basically, though, it sounds like most of the problems have cleared up? Is it like that or does the transplantation also bring limitations??

Reiner Heske: Many problems have been solved, yes. As I said, the symptoms in the lungs are gone. I no longer have shortness of breath, I am extremely fit and have been able to run marathons and cycle races up to 120 kilometers in recent years. This would have been unthinkable before the transplantation. A few meters of walking brought me to the limits of my physical endurance and that despite oxygen therapy. Another positive effect is that the therapy with immunosuppressants has almost completely eliminated my allergy-related asthma, which used to be very pronounced. Breathing today is not comparable to the way it used to be. My bronchial tubes were always tight. I was breathing through a straw and it was getting worse and worse. Breathing was work for me, even when I was young. As a child, I tried to do the same as my friends, but was constantly thwarted – by shortness of breath and by infections. Now my lungs no longer slow me down. I could also notice a big difference in respiratory infections. For one thing, I’ve had far fewer infections in recent years. On the other hand, being ill was associated with much less suffering than before. Before the transplantation, infections were accompanied by unbearable shortness of breath, I had to endure strong coughing attacks lasting several minutes until tears ran down my cheeks from exertion. An infection usually always ended in hospital with several weeks of intravenous antibiotic therapy. Today I have a little bit of sniffling or coughing when I am sick. But that’s it – from the perspective of a CF person this has nothing to do with being sick, it is a piece of cake.

There are limitations, of course. For example, it is more difficult to build muscles under cortisone therapy. Another limitation is that I do not eat raw meat. In general, I have to make sure to eat as germ-free as possible; ideally, that means cooking, simmering or heating everything so that potential bacteria and viruses on the food are destroyed. Strict hygiene is also part of my daily routine. But I gladly accept these limitations. After a transplant, the restrictions and burdens shift from the body to the psyche.

PARI Blog: How do you mean that – the burdens shift to the psyche?

Reiner Heske: Before the transplant, I tried to do everything I felt like doing as much as possible. This included participating in public life. I try the same now, but since the transplant I have to pay more attention to hygiene. The immunosuppressants make it easier for me to catch infections. This is problematic because the immune system may not be able to distinguish what it should fight in the event of an infection. Is it the viruses that don’t belong in the lungs or is it the lungs themselves that don’t belong there? That’s why any infection can promote a rejection reaction. With the Corona pandemic, my worries have not become any less, especially since I have been following the recommended hygienic measures for years anyway, usually wearing a mouth guard and isolating myself as much as possible. Also, I always have in the back of my mind that every donor organ will be rejected at some point in time. With lungs, it takes an average of ten years. My transplantation was seven years ago. There one makes oneself already so its thoughts. But statistics are relative.

PARI Blog: A life expectancy after lung transplantation of ten years on average. That sounds frightening. How does rejection announce itself?? And can you do something against it?

Reiner Heske: Deterioration of lung function can be a first sign of donor lung rejection. Therefore, I check my lung function myself every day at home, so as not to miss anything. There are therapies that can at best slow down the rejection. If that doesn’t work, a re-transplantation, i.e. a second transplantation, is theoretically still possible.

PARI Blog: A second transplant – would it be an option for you??

Reiner Heske: A second transplantation can only be performed under very specific conditions. In addition to medical requirements, it also depends on the regulations that prevail in the respective country. In Germany, for example, cystic fibrosis patients are only transplanted up to a maximum age of 60 years. In addition, all parameters must fit and the patient must not have any previous malignant diseases. I have only half of my pancreas left, gall bladder, appendix, duodenum and parts of the intestine have been removed. Moreover, I am over 50 years old. Such thoughts are going around in my head. And therefore I could imagine that it could be tight for me with a second transplantation because of my age.

PARI Blog: Exclusively positive doesn’t sound like all that. What would you advise other people who have to decide for or against a lung transplantation??

To draw attention to the importance of organ donation, Reiner Heske organizes donation runs

Reiner Heske: I see it in such a way that with the donor lung I have been given seven years of a carefree, free, beautiful life. Therefore, I am forever very grateful to the donor and his family. For me, the step of transplantation was and still is the absolutely right one. I would advise everyone to take this step if they enjoy life and have fun. Of course you take a risk, of course there are also disadvantages, which by the way are presented to you in a tough way during the explanatory talk. But when you are faced with the decision for or against a transplant, you usually don’t really have a choice. What do you have to lose? I would go the way again.

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