Author
Christine Stukan, as appeared in Alpha1 Journal 1/2024.
My name is Christine Stukan, I am 58 years old and have two daughters, aged 25 and 22. I am now fully retired and have had a lung transplant for almost exactly a year. I am feeling better than I have in decades, so I am happy to be able to tell you my story today.
I have experienced almost all facets and stages of COPD – from diagnosis to lung transplant. I want to encourage you and give you confidence that perseverance and fighting on will always be worthwhile; for us and for our loved ones.
In the early 2000s, I was referred to a pulmonologist by my family doctor because I was experiencing significantly more difficulty breathing and shortness of breath than usual. It took another six and a half years until, in 2009, I received the diagnosis of AAT genotype PiZZ and began Prolastin replacement therapy. For this, I was admitted to the University Hospital in Munich-Großhadern. I shared a room with another Alpha1 patient who was there on the lung transplant waiting list. Up until then, I had rather naively thought that I was missing an enzyme and that once I received the replacement, everything would be fine. Through my fellow patient's story, I was forced to grasp the full extent of the potential consequences of the disease.
Over the years, my lungs deteriorated progressively. My daily life, juggling work, two school-aged children, and household chores, became increasingly difficult. I worked in an office, which is why it was still manageable. In 2011, as part of a rehabilitation program, I was prescribed long-term oxygen therapy. My Spirit (portable oxygen concentrator) and I became inseparable. With oxygen, I was actually able to exert myself considerably more. As a result, I applied for a higher degree of disability and received the additional designation "aG" (extraordinary walking disability), which entitles me to the blue parking permit for severely disabled individuals – a significant improvement in my daily life.
I struggled through life, which became increasingly difficult. Then, on top of everything else, I also had to organize and care for our elderly parents. I was barely managing to make ends meet with all this, but I had to, and my job was very important to me and provided me with stability. Due to my now dire health situation, the topic of transplantation as a possible option came back into focus.
„"I struggled through my life, with increasing difficulty."“
In 2013, I therefore went to rehab. I wanted to delve deeply into the topic of transplantation. Since it involves a highly invasive procedure with considerable risks, it was a very difficult decision with far-reaching consequences for me and my family. After careful consideration, however, I decided against it for the time being because of the risks and because my teenage daughters still needed me.
In 2018, I had four valves implanted in the lower lobe of my left lung. These worked exceptionally well, and my lung function improved significantly. For a few weeks, I had a completely new quality of life and could breathe properly again. Unfortunately, this was short-lived because the elasticity of my lungs decreased, which apparently can happen in rare cases.
This sublime feeling of being able to breathe properly again and get enough air finally convinced me to get listed for lung transplantation. I wanted to experience that quality of life again if I had the chance – despite all the risks.
In November, I spent two weeks at the university hospital in Munich-Großhadern for a pre-employment examination. This meant a complete and thorough check-up. Given my already very poor health, this was really stressful and exhausting.
My current state of health was assessed, and cancer was ruled out. A psychologist also evaluated whether I was mentally stable enough for this major and stressful surgery. She wanted to know if I would be able to adequately and sustainably care for myself and a new lung, and whether I could accept and appreciate a new organ. The consultations with the surgical and anesthesiology teams also took place within this framework, so that they could react quickly if a donor organ were found. Thus, in February 2019, I was placed on the transplant list, and it was a matter of waiting for an organ. My mental health deteriorated, and to make matters worse, I developed anxiety and panic attacks, which had a truly dramatic impact. I had up to ten panic attacks a day, which left me so incapacitated that I could barely breathe. It was so bad for me that I sought help at the respiratory emergency clinic.
It's part of the palliative care unit at the university hospital. They work with a completely different approach there: the shortness of breath originates in the lungs, but is triggered in the pain center of the brain. Low doses of morphine can improve the breathing somewhat. I also received help there through conversations with a psychologist, who subsequently recommended cognitive behavioral therapy.
In 2020/2021, I therefore began therapy to regain control over my psychologically distressing situation and to get the very debilitating anxiety and panic attacks under control. However, this only worked to a limited extent, since there was a physical cause for them. At least I learned to regulate myself in such situations so that I could breathe again and get enough air.
My health deteriorated steadily. As a result, I became increasingly fragile and hardly dared to do anything. Even the slightest exertion, like putting on socks or shoes, left me acutely short of breath. A cold or any other infection was a complete disaster for me. I could barely get through the day, even though I had nothing else to do but take care of myself. During this time, my daughter, who still lived at home, provided me with unwavering support, for which I am incredibly grateful.
During a rehabilitation program in 2021, I had to realize that I had to end my beloved job and could no longer live alone. This was a very difficult realization for me, as I had so cherished my independent life. I then applied for care level 2 through the social services department there and subsequently submitted an application for a disability pension after the rehabilitation program.
In the spring of 2022, I moved from Munich to Weinheim to live with my sister and brother-in-law. They had made me the incredibly generous offer to live with them, even though my sister herself was seriously ill. My heartfelt thanks to them.
Despite my deepest resistance, I even got myself a walker, and we became best friends: I could go for walks alone again and sit down for a bit, and that gave me a sense of security. My sister and I were quite the sight when we were out and about—me with my glasses and walker, and my sister with her glasses—and then there was the resemblance!
Organ donation
TO DISCONTINUE OR TO ACTIVELY AGREE?
In 2020, the German Bundestag passed the law "Strengthening the Willingness to Decide on Organ Donation." It stipulates that the willingness to donate organs after death will be inquired about more regularly. A declaration of organ donation can also be made in an online registry and at identification offices. Read more about the change in the law.
I struggled on through my now considerably diminished life. My lung function test showed only 16-18 %. Despite this, I went to the gym and did pulmonary rehabilitation exercises, and I took my walks in the woods, which by then took forever – none of it was fun anymore, but giving up wasn't an option. Besides, you're supposed to be in reasonably stable health with the best possible fitness – or what's left of it – to get a transplant.
In January 2023, my sister and I received training and instruction on home self-therapy with Respreeza through the Thorax Clinic. This saved us a considerable amount of time in our daily lives. It's no longer relevant for me, but my sister still benefits from it. After four years and two months, at 9:30 p.m., the long-awaited call came from the transplant center informing me that a lung was available. My two daughters were visiting for a week at the time. At first, I was literally speechless with shock, and then I became frightened. My daughters quickly packed the essentials for me, and an hour later, the ambulance picked me up and took me to Munich. My daughters and I had to say goodbye to each other with the fear that, in the worst-case scenario, we might never see each other again; but thankfully, that happens very rarely.
I actually managed to calm myself with the thought that I now had to place my life in the hands of the doctors, fate, or God, because I no longer had any control over it myself. Once I arrived in Munich, I still had to wait for the final go-ahead as to whether the new lung could actually be transplanted; until then, that wasn't certain.
At 6:00 a.m. I went to the anesthesia preparation room and was incredibly relieved when I was energized. Three days later, I was brought out of the medically induced coma and was happy to see my daughter at my bedside first. So everything had gone well and I was alive. And the breathing tube was out. I'd been pretty scared of that, too.
I felt awful, even though everything had gone perfectly for me. I was in incredible pain and so weak I could barely speak. I felt like I wasn't breathing any better than before; only later did I learn that this is perfectly normal – if only someone had told me that beforehand!
During the first few days and sleepless nights, I seriously asked myself: What have I gotten myself into? The first few weeks were truly awful! After a week, I was moved to a regular ward.
My physiotherapist came every day, getting me back on my feet and moving again with ever new exercises.
We did breathing exercises daily because I had to relearn and practice proper breathing. My muscles had completely atrophied, and I had to fight my way back to life and onto my feet – still in considerable pain.
„"I am incredibly grateful to my donor for giving me a new lung – and thus a completely new life."“
After five weeks in the hospital, I went directly to rehabilitation at the Schön Clinic in Schönau am Königssee. By then, I was feeling considerably better, and my fighting spirit had returned. In addition to training and medical care, we received comprehensive instruction and were prepared for life at home. Due to my suppressed immune system, there were several things for me and my family to consider – such as a low-germ diet, hygiene measures, and personal protection with masks, etc. Exchanging experiences with other transplant patients also made me feel more confident in dealing with my new situation. Meeting other people, some of whom had been transplanted decades earlier and were doing very well, gave me courage and confidence that I could manage and that everything would be alright. After a total of ten weeks, I finally went home. Initially, I was still very unsure of myself at home, but that quickly subsided, and I settled into a new daily routine. I am still incredibly happy about my new life. It was, and still is, an exhilarating feeling to breathe freely and get enough air again.
I am eternally grateful to my donor for giving me a new lung – and with it, a completely new life. I was able to accept it without any problems because he or she hadn't died for me. I am also incredibly happy and grateful for the support of everyone who treated, cared for, and accompanied me on my journey to this new life.
I'm now a completely new person with an outstanding quality of life. I'm delighted with my life every single day, and my loved ones share in my joy. I diligently train for fitness and lung health. I enjoy taking long walks through the Odenwald – my new home – and I find it incredibly rewarding. I can once again attend events, festivals, and concerts, meet up with friends, and do everything I feel like doing that was no longer possible.
Even if my health should decline again at some point, I will be grateful for this wonderful time I was given. I would choose to have a transplant again in a heartbeat. If you have any further questions, please feel free to ask!
