Will My Doctors Stop Trying If I Refuse a Lung Transplant?

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The appointment sat on my calendar. Columbia University Hospital. Lung Transplant Evaluation. Seeing those words made my condition feel more advanced than I felt. The appointment looked less like a date and more like a verdict my lungs had reached during a private meeting. I had agreed to learn more. Now I had an appointment for a future I wasn't sure I wanted.

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It's a body ribbon where the truth gets told. About medical mysteries and growing old with a little dark humor and a whole lot of grit.

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Welcome to A Body Rebels. I'm Tate. This podcast shares my personal experiences and is not medical advice. Please speak with your own provider before making medical decisions. The voice you're hearing is AI because illness makes speaking difficult, but the writing, memories, opinions, and experiences are mine. I'm talking about why I canceled my lung transplant evaluation and my fear of how refusing a transplant might affect the rest of my medical care. A couple of months ago, I began seeing a new pulmonologist. During our first appointment, she referred me to Columbia University Hospital for a lung transplant evaluation. I told her I wasn't interested in a transplant. I had already spent time thinking about the possibility. My wife and I had discussed what such a decision would mean for both of us, and I had shared some of my reasons in an earlier podcast episode. My pulmonologist made a sensible point. An evaluation wasn't an agreement to undergo surgery. A referral didn't guarantee acceptance by the transplant team. Attending an appointment wouldn't automatically place my name on an active waiting list. She wanted me to keep an option open. I would learn more about the process, and the transplant team would review my health. If my condition worsened, I wouldn't necessarily have to begin the whole conversation from the beginning. I understood her reasoning. I agreed to the referral. Then Columbia scheduled the appointment, and the idea gained weight. A medical possibility had become a date on my calendar, attached to a hospital and a group of specialists. I started reading more about lung transplantation. I looked into the evaluation, surgery, recovery, anti-rejection medication, infection precautions, follow-up care, and responsibilities placed on a caregiver. A transplant isn't one operation followed by a tasteful montage of me walking through a garden in progressively cozier sweaters. The evaluation alone involves appointments and tests. From my reading, I understood the team would look beyond my lungs. My heart, the rest of my health, my readiness for surgery, and support at home would all be part of the discussion. Recovery would bring rehabilitation, medication schedules, testing, and frequent contact with the transplant center. I also read about anti-rejection drugs, suppressing the immune system, and the infection concerns accompanying those medications. Infection already shapes much of my life. Because of immunosuppression, I avoid many public places. An ordinary outing requires planning around oxygen, stamina, and how much energy I'll have left afterward. I had to consider the benefits alongside another demanding medical routine. I respect people who choose transplantation. For someone else, the operation and everything afterward might offer the future they want. My reading gave me a greater appreciation for the commitment involved, including the commitment of everyone helping at home. I needed to decide whether I wanted the whole process. Surgery was only part of the question. My wife and I would live with everything surrounding the operation, including the recovery and changes to our daily lives. I've lived with sarcoidosis for 20 years. My medical history includes open lung surgery, spontaneous pneumothoraces, pleurodesis, heart failure, and an implanted defibrillator. I've been through scans, medications, procedures, and hospital stays. I know what recovery asks of my body. I've also seen how much serious illness asks of my wife. Medical care reaches into the household schedule, sleep changes, transportation becomes part of treatment, paperwork accumulates, and ordinary plans depend on how I'm doing. My wife notices changes in my breathing and signs other people miss. Her attention means a great deal to me, but I know she carries worry along with the practical responsibilities. With a transplant, she would travel with me, listen to instructions, watch for warning signs, and help through my physical recovery. She would have her own fear to manage while helping me manage mine. I couldn't treat her role as a small detail near the bottom of a medical checklist. We talked through the decision together. We're both comfortable with my choice not to pursue transplantation now. Receiving a donated organ also raises emotional and spiritual questions for me. I think about the person whose life ended, the life behind the organ, and how receiving such an intimate gift would affect me. I understand a donated organ doesn't carry someone's personality, character, morality, or behavior. My thoughts belong to the emotional and spiritual side of the decision. I'm expressing my own feelings, without judging donors, donor families, or transplant recipients. I respect organ donation and the personal beliefs people bring to receiving an organ. After researching, meditating, praying, and talking with my wife, I knew I didn't want to continue with the evaluation. I called Columbia and canceled the appointment. When the call ended, I felt settled about the cancellation. Then I began thinking about my medical record. The referral would still be there. My doctors would see lung transplant evaluation, along with my decision to cancel. Would they read my refusal as a sign I no longer wanted active treatment? I don't know how they'll respond. I haven't described a change in my care here. I'm describing a fear about what happens next. My doctors weren't part of every conversation with my wife. They didn't follow every hour of research, prayer, or thought behind the cancellation. A brief entry in my record wouldn't explain all of those considerations. I worry about my decision being reduced to a refusal without the reasons surrounding my choice. I still want treatment. I want my doctors to investigate new symptoms, review medications, and look for areas where my health or daily function might improve. If something changes, I want a careful look at the cause. I don't want every new problem attributed automatically to the expected progression of lung disease. Comfort matters to me. I'm a great supporter of comfort. I own pillows with specific job descriptions. I also want physicians who remain curious about my body. I want attention to the problems still worth investigating, and an honest explanation of the options available. My history gives me a reason to care deeply about how my future gets discussed. Years ago, I received a prognosis of five years. I'm still here. My health hasn't remained untouched. Sarcoidosis, damaged lungs, and heart failure have affected my body. I've gone through years of treatment, setbacks, and physical change. Still, the five-year prediction affects how I hear statements about the time ahead. I respect medical judgment, and I understand disease progression is real. A prognosis carries meaning, but I don't hear a prediction as a timer installed inside my chest. Surviving beyond those five years doesn't promise another 20. My experience does make me reluctant to accept a shortened future without asking what else deserves attention. I want room for uncertainty in both directions. I understand my health might worsen. I also want my doctors to keep looking for opportunities to help. My decision about transplantation might change too. If my breathing worsens or my quality of life changes, I might view the process differently. I don't know how I'll feel from inside a future physical condition. Reconsidering later wouldn't erase the honesty of my choice today. I would be making another decision with different circumstances in front of me. For now, I don't want to enter an evaluation solely to preserve an option I don't expect to choose. Even without surgery, the process asks something of me. Appointments require travel and energy. Tests take time. Preparing for the evaluation brings anxiety and directs my attention toward a future I don't want to pursue. Managing my existing care already takes a large portion of my time. I'm deciding where to spend the energy I have. The next conversation with my doctors matters because I need them to understand what I still want. I'm willing to discuss medications and other treatment options. I'm continuing to watch for changes, attend appointments, complete tests, and participate in decisions. If I sense a change in their approach, I'll ask direct questions. What is the goal of my treatment now? Are we still looking for ways to improve my health? What treatment options remain? What traitness are you watching for? I wouldn't ask those questions as accusations. I would ask because I need to know whether we still share the same goals. I want honesty. False reassurance doesn't help me. And neither does a motivational speech delivered beside an anatomical model of a lung. I want a physician to explain why an option is available or why an option won't help. If an adjustment is appropriate, I want the adjustment considered. If something needs investigation, I want to understand the next step. I don't expect every doctor to agree with my decision. I do expect respect for the thought behind my choice and for my right to decide what I'm willing to put my body through. If I begin feeling as though my only remaining task is to decline quietly, I'll address the problem. If the problem continues, I'll look for another physician. My doctors bring medical knowledge and professional judgment. I bring the experience of living in my body, along with the consequences my wife and I would face at home. I need both parts of the conversation. And I remain invested in living, preferably for a long time. I'd like enough years to become a cranky old man who complains about technology while wearing 12 connected devices to monitor his vital signs. I want to distrust whatever replaces smartphones while secretly appreciating everything the device does for me. I want to tell younger people music sounded better before songs were transmitted directly into the bones of their skulls. I'd like an old cardigan nobody is allowed to throw away. I'd also like firm opinions about the correct temperature of soup. Those wishes belong in this conversation too. When I think about my future, I'm thinking beyond procedures and appointments. I'm thinking about having more years to live, with ordinary pleasures and ridiculous complaints. I feel comfortable with canceling the evaluation. I'm still uncertain about how my doctors will understand my choice, and I'll need to speak clearly with them. I want them to hear the whole decision, including my desire for more time and the treatment I'm still willing to pursue. I'm still asking my doctors to help me live. This has been A Body Rebels. I'd love to hear from you. Write to me with your thoughts on the podcast, the topics or issues you'd like me to discuss, or a story from your own life. With your permission, I might share your story in a future episode. I'm Tate. Thanks for sharing this time with me. Until next time, take care of yourself. Keep breathing, and remember, sarcoidosis is only rare until you're the one living with it.

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