Table of Contents
Three main categories were identified: (1) Finally, on the waiting list, (2) Reborn with new lungs, and (3) A new life with medications and their effects. These categories were further divided into seven subcategories (Table 3).
Finally, on the waiting list
Transition and coping with deterioration
Most participants described being unprepared for the decline in their lung function, which eventually led them to need a lung transplant. The transition to a deteriorated state varied among participants. For instance, one participant noted:
“I developed a pneumothorax and became very ill, with my condition worsening rapidly… I was shocked to find that I couldn’t walk up three steps or make my bed. My health deteriorated quickly, and I was confined to my apartment. During the last few weeks in the hospital, I was barely aware of my surroundings.” (P18).
For others, the decline was gradual, spanning several years:
“It developed over three to four years, and the first real memory was meeting Dr. X, who told me bluntly when she saw my spirometry: ‘How does it feel to only have 33% lung capacity?’ I thought I had around 53% because I added FEV and FVC and came to about 50. However, she said it is the FEV they follow, and I was approaching the 30% mark. That left an impression on me for a while, but I still felt fine…” (P9).
When participants reached a level of health deterioration to the point of needing a transplant, many felt unprepared, believing that transplantation was a distant possibility, if necessary at all. However, the transplantation and CF teams conducted rigorous check-ups before transplantation to cover all medical aspects, making them feel safe and well-cared for.
“I had for many years thought that I would die from CF and that there would not be a transplantation, that I would die around forty.” (P16).
As the participants’ condition worsened, they experienced a substantial decrease in strength and mobility. For some, this decline resulted in overwhelming fatigue, which significantly impacted their daily activities.
“I was so ill then, you know, just taking a shower was like a marathon. So, I mostly stayed home. I tried shopping but was completely exhausted afterward.” (P20).
Participants also struggled with their daily routines:
“I would work on Monday, rest on Tuesday and Wednesday to build up the strength for work on Thursday, and then rest on Friday, Saturday, and Sunday to get through the following week.” (P23).
The constant physical discomfort and the restrictions imposed by their symptoms took a significant toll on their mental health, resulting in depression, anxiety, or feelings of hopelessness. As the severity of symptoms escalated, participants described an increasing sense of helplessness and of feeling overwhelmed by their inability to control their bodies. This sense of loss of control led to heightened anxiety, with participants expressing concern over the progression of their condition and the uncertainty surrounding their future.
“I stayed awake at night because even a slight cough would lead to bleeding. It is not something I think about now, but at that time, it was a tough, tense, and depressing period.” (P23).
The decline caused by CF, with its demanding symptoms, made this period of uncertainty particularly challenging.
“The battle was against the clock. Will I drown in my mucus before I get new lungs.” (P23).
Cognitive impairment posed a considerable challenge, with participants often struggling to understand the information provided by healthcare professionals fully. The constant feelings of exhaustion and breathlessness led to a significant amount of stress:
” At that time, it was like… I had to walk from the station to the hospital, and I needed to have done my inhalation properly for a week before so I could manage it and at the same time be mentally alert enough to undergo these examinations and speak for myself.” (P16).
Maintaining hope was crucial during these challenging times. The waiting period felt like an emotional rollercoaster of hope and despair. Participants frequently longed to perform everyday tasks without the constraints imposed by their compromised respiratory health. Simple activities, such as doing the laundry, held significant meaning for them.
“My life was about taking medication, inhalation, and breathing exercises. My motivation was to breathe without oxygen. I wanted a normal life that gave me strength and motivated me to struggle.” (P17).
Dependency, isolation, and guilt
At times, participants isolated themselves to avoid infections. This isolation meant they hardly met anyone, which was incredibly challenging for teenagers living with their families, as they wanted to do what their friends did. Participants expressed their dependence on various tasks, such as household chores and transportation to medical appointments.
“Our sons often had trouble socializing with friends and having them over at our house. We did not realize this could be so challenging.” (P12).
Participants often felt isolated and emotionally burdened due to the need to avoid infections, which limited their social interactions and increased their dependency. Consequently, they depended on family members for physical, emotional, or medical support. Some participants recognized that the dependency fostered deep connections and strengthened their relationships because they navigated the challenges together. Others experienced significant family stress during the waiting period, which caused conflicts and disagreements, especially about treatment and social isolation due to infection control.
Some participants shared that their family members weren’t involved in their care and were unaware of the upcoming transplant.
”It was awful… this waiting period had been going on for two, three years, and it was perhaps the worst period of my life because I felt completely alone in it.” (P13).
Almost all participants frequently felt guilty for disrupting their families’ lives. The most difficult situations arose when family members disagreed about treatment and infection control.
“My parents often argued about my treatment, and it was difficult for me to hear. One of my parents would not listen to anyone and would blame my other parent if I got an infection or if my lung function did not improve after intravenous treatment. I have little contact with that parent today, as I always felt guilty.” (P5).
Participants also described guilt related to the donor. In moments of desperation, they wished for a scenario where someone might die so they could receive new lungs. One participant described this internal conflict and the psychological and existential challenges that came with being on the waiting list:
“I felt unworthy, struggling with the thought that someone else needed the lungs more than me. The guilt weighed heavily on me.” (P12).
Another participant echoed this sentiment:
“I started thinking… I had wished that some motorcyclist or someone could die so that I could get these lungs. And then I was a bit disappointed in myself in some way, that I had those thoughts.” (P7).
The role of communication
All but two participants described wanting a more open and transparent dialogue with healthcare professionals earlier in their interactions. They emphasized that these conversations should cover their medical condition comprehensively, including the potential for lung transplantation. This need for early dialogue was noted by those who had been transplanted many years ago and those who had undergone the procedure more recently.
Participants believed that if this dialogue had been initiated earlier in the clinical routines, they would have better understood their situation. Early conversations would have helped them grasp the seriousness of their condition and the potential benefits and risks associated with lung transplantation. Participants said this early engagement could have alleviated some of their anxieties and better prepared them for future decisions and challenges.
“It is hard to start talking about difficult things if you are never asked or have the conversation.” (P13).
However, some participants acknowledged that they must be mentally and emotionally prepared for such dialogues. They recognized that receiving and processing complex and potentially distressing information required a certain level of readiness and support. One participant shared their experience, highlighting the importance of preparation:
“For a long time, I was not ready to hear about the possibility of transplantation. It was overwhelming to think about. However, when my doctor finally sat me down and explained everything clearly, I felt more in control and less anxious about my future. I wish this conversation had happened earlier, but I also needed time to come to terms with my condition.” (P15).
Participants expressed needing more proactive communication and comprehensive information to increase their understanding of potential long-term side effects after transplantation and the risks associated with immunosuppressive medications.
“I wish I had received more detailed information about the side effects you can get as I had no idea that you could be affected by such things.” (P21).
Participants emphasized the importance of not treating guilt and the wish for another’s death as taboo, recognizing how natural it is to have such thoughts and feelings in a severe situation. They acknowledged that facing a life-threatening illness and trying to cope can lead to complex and sometimes uncomfortable thoughts. They highlighted the need to discuss these feelings openly and without judgment as a crucial aspect of emotional support during the transplant process. One participant shared:
“While no one wishes for anyone’s death, such thoughts may cross one’s mind when one is seriously ill.” (P7).
Reborn with new lungs
A second chance but with new challenges
When participants woke up after the transplantation, they first felt appreciation for life and the ability to breathe freely and effortlessly. The newfound ease of taking deep breaths felt like receiving a gift or being granted a second chance.
“I took a deep breath… then I held it all the way down to my toes. And then I did it again…” (P12).
However, the time after transplantation was not without difficulties. All participants, except two, described experiencing extreme pain after the lung transplantation and not being prepared for this intensity of pain when waking up in the ICU after surgery.
“Pain like hell.” (P11).
…when I asked before [the transplantation], will it hurt? No, no, you will get enough painkillers… but that was not true.” (P16).
Participants also described struggling with pain several years after the lung transplantation. Pain made them feel weak and incapable of performing the recommended activities, such as physical training. Some also felt that healthcare professionals did not take their concerns about pain seriously.
“It is several years after the lung transplantation… I still have terrible tingling in my feet and legs and pain in my calves, especially at night. I have a numbness like a belt around my armpits over all the incisions. I have no feeling in the front of my chest, and it is painful.” (P5).
“I have problems with pain in my legs and feet and problems walking, and I have had it since transplantation five years ago.” (P21).
Many participants shared the challenges of depending on family members for daily tasks and emotional support, often resulting in feelings of guilt. This reliance underscored the emotional complexities of recovery as participants struggled to reconcile their evolving identities with the reality of needing assistance during the healing process.
“I felt bad for needing so much help; I didn’t want to burden my family, but I couldn’t manage on my own.” (P7).
Extended periods of sickness consumed much of their physical and mental energy, leaving little room for addressing deeper, more personal concerns. Participants reported primarily focusing on managing CF and its immediate impacts. As a result, once they started to recover and had more energy and time, they became more acutely aware of these neglected aspects, such as existential thoughts, leading to feelings of depression and anxiety.
“I have felt like this afterward that a lot of my, if you want to call it, mental problems—it is not that I should call it mental problems, but like depression, anxiety, and that kind—it has come after the transplant when I felt better and had more time in some ways to focus on things that I had to ignore because I did not have the time and energy to think about things like that.” (P16).
Adjusting to a new identity
Following a lung transplant, participants reported a mix of emotions as they transitioned from a life bound by daily inhalations and intravenous treatments to one of newfound freedom. These integrated routines had become a significant part of their lives, and their sudden removal provoked a re-evaluation of their expectations and a redefinition of their sense of self. For some, this liberation was tinged with unfamiliarity, as they had become accustomed to their patient role, and adherence to medical regimens had become second nature.
“Sometimes I do not recognize myself, like when I stand in front of the mirror. Before the transplant, I always had oxygen in my nose: I was thin and had an infusion pump with antibiotics. Now, nothing…” (P2).
Many participants noticed a significant shift in how others perceived them following their transplant. On the one hand, they experienced a sense of liberation due to their improved health status. They enjoyed the newfound freedom to engage in previously impossible activities, enjoying a better quality of life and the ability to participate more fully in social and physical activities. On the other hand, this change also came with its challenges. Participants felt subtle pressure to meet the new expectations from their improved appearance and health. Seeing the outward signs of recovery, family, friends, and colleagues often assumed they were fully capable and free of any persistent issues. This assumption sometimes led to unrealistic expectations regarding their energy levels and capabilities, causing participants to feel stressed and overwhelmed as they tried to live up to these new standards:
“CF is a serious disease like dealing with cancer. Being transplanted, you do not have the same diagnosis or the same fear of dying, but you switch one serious condition for another.” (P5).
A new life with medications and their effects
Emphasizing the importance of medications
Participants acknowledged the critical role of immunosuppressive medication in preventing organ rejection. They described understanding the necessity of adhering to their medication regimen.
” I would not dare to risk rejection by messing with the medication and taking a chance because I do not want to take it.” (P5).
For those who have spent their lives managing CF and its associated treatments, the transition to immunosuppression therapy after transplantation was not markedly challenging. Most participants found it relatively easy to incorporate the immunosuppressive regimen into their pre-established medication routines.
“It has not been a huge difference… taking the pills is obvious stuff.” (P8).
Despite understanding the severe consequences of non-adherence, such as organ rejection, participants described instances of missed doses. They frequently attributed these lapses to competing priorities, including work obligations, social events, and family responsibilities.
“I was doing well during sick leave, but I became careless once I returned to work.” (P9).
Burden with side effects
Each day became a balance between feeling grateful for the new lungs and managing the discomforts caused by the immunosuppressive medication. The participants described struggling to manage the side effects.
“Side effects have darkened my life after the transplant, I must say. But I am finally on a medication that’s somewhat effective, even though my stomach has been very troublesome” (P3).
Another participant noted that many transplanted persons tend to downplay their health struggles because they perceive them as minor compared to the life-altering experience of undergoing a transplant:
“I have noticed, which has surprised me a little, that the side effects are greater than I thought. Many of us transplant patients feel that what is happening now is nothing compared to having undergone a transplant, so we do not talk about it. It seems to be something, but if you scratch the surface a little, this and that and the third come up.” (P9).
Participants expressed that they experienced various side effects that significantly impacted their lives. They felt that healthcare professionals did not fully understand their concerns, as the focus primarily was on the new lungs and CF.
“They did not understand me. They sent me to a psychologist and a physiotherapist because I was tired and weak. One day, I had a high fever and went to the emergency ward at the hospital. They took extra blood samples, which showed that I had lymphoma. It felt somewhat good because no one relied on me.” (P18).
Other participants described severe complications related to immunosuppressive medication. One participant shared:
“My kidneys collapsed, I am blind in one eye, and I developed skin cancer.” (P21).
