When the New Pulmonologist Asked About a Lung Transplant, I Already Knew My Answer

After insurance forced me to leave the pulmonologist who had known my lungs for twenty years, a brand-new doctor asked a question that hit me like a dropped skillet: had anyone discussed putting me on the transplant list? If you live long enough with sarcoidosis and serious lung disease, transplant eventually enters the room. But hearing the question and wanting the answer to be yes are not the same thing. This episode is about that first appointment, the shock of being asked so bluntly, and why my answer was already there, waiting.

This podcast is narrated using an AI voice. The words, reflections, and lived experience are my own.

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Transcript

SPEAKER_00 0:14

I was still trying to settle into the chair and get my bearings when the new pulmonologist asked if anyone had talked to me about getting on the transplant list. Hello and welcome to Thoughts While Surviving Chronic Illness. I'm Tate. Today I want to talk about what it felt like to be asked on a first visit with a brand new pulmonologist, whether I wanted a lung transplant, and why my answer was immediate. There are some things in life that deserve a gentler entrance. Bad news. Big questions. Anything involving your lungs, really. But apparently that memo got lost somewhere between my insurance company and this new office. Because there I was, not even fully unpacked from the emotional nonsense of changing doctors after 20 years. And suddenly we were talking about transplant. And that part matters. For two decades, I had the same pulmonologist. Twenty years is not just a doctor-patient relationship. That is history. That is memory. That is somebody who knows the difference between how you sound when you are actually okay and how you sound when you are pretending to be okay. Because you do not have the energy for a full presentation. He knew my lungs, he knew my pattern, he knew my version of fine, which, if we are being honest, has always been a slightly suspicious word. Then insurance stepped in and did what insurance does best. It took something stable, useful, and humane, and turned it into a bureaucratic hostage situation. So after 20 years with the same amazing doctor, I had to change pulmonologists because of insurance. That alone was enough to irritate every cell in my body, including the dramatic ones. There is something deeply offensive about having chronic illness for years, surviving all kinds of medical chaos, and then being undone by paperwork. You can handle scans, procedures, specialists, medications, and the occasional doctor who talks to you like your body is a dishwasher that keeps flashing error codes. But continuity of care? Apparently that is a luxury item now. So I went. New office, new doctor, new forms, new staff, new everything. The usual ritual of handing over your insurance card, and then explaining your life story to strangers while they type with the urgency of people documenting a maritime disaster. And then came the question, has anyone discussed getting onto the transplant list? No warm-up. No soft landing. No. This may be difficult to hear, but just straight to it. Like somebody opened the appointment by throwing a brick through a window and then asking how my breathing had been. Now, I understand why she asked. That is her job. She is a pulmonologist. She has to think ahead. She has to look at the road in front of me and mention the things that may eventually become options. Even when those options feel less like hope and more like a heavily armed stranger kicking in the door. And this was not the first time the word transplant had crossed my mind. If you live long enough with serious lung disease, if you live long enough with sarcoidosis, reshaping your life one quiet theft at a time, eventually that word drifts into the room. Maybe late at night, maybe during a scan, maybe while reading things, you absolutely should not be reading when your brain is already in a dark mood. The idea had been there before. But thinking about transplant in theory and being asked about it out loud are not the same thing. One is abstract. The other sits down beside you while you are still trying to find a place for your coat. And the strange thing was, beneath the surprise, my answer was immediate, not panicked, not confused, clear, no. Not because I was trying to be dramatic. Not because I was trying to sound noble, brave, spiritual, or like a man auditioning to be inspirational wall art in a clinic hallway. Just no. Honest no. Grounded no. The kind of no that had apparently been living inside me for a while, waiting for somebody to ask the question plainly enough for me to hear it back. The first reason is simple. I am sixty four, and I say that without doing the usual little dance people do, where they insist age is only a number, and sixty-four is somehow the new forty if you hydrate, stretch, and lie aggressively. I am sixty-four. That is the number. I would admit that I have aged well, considering the host of problems with my body. I have lived a full and amazing life. I have loved my wife deeply for the past forty five years. I have had the honor to love and lost so many fur covered angels. I have worked hard, I have cooked for a living, I have traveled, I have lived a very privileged and blessed life. A life that most people could only ever imagine experiencing. I have laughed at absurdity because honestly, what else are you going to do? I have survived things I was not expected to survive. I was once given an average prognosis of five years, and I outlived that in such an inconveniently determined way that it still feels a little surreal. So when I think about a lung transplant, one of my first thoughts is that someone younger than me deserves that chance more. I know that is not how transplant medicine works, in some dramatic movie scene where I step aside nobly while violins swell. I understand there are systems and criteria and scores and teams who decide these things. I know all of that, but emotionally, that is still how it lands in me. I have had a life, a real one, a full one. Not a perfect one, obviously. I am not a maniac, but a real life. Rich in all the ways that matter. And when I think about someone younger, someone who has barely gotten started, I cannot shake the feeling that the gift should go there. The second reason is harder to say, but it is true. I do not think I could carry the reality that my survival came from another family's worst day. People talk about organ donation in beautiful language, and I understand why. It is beautiful. It is generous, it is life-saving, but it is also born from loss. It is not a cheerful exchange. It is not a neat transaction, it is somebody else's catastrophe becoming your possibility. I do not know that I could hold that gracefully. Some people can, some people do. Some people receive an organ and live with gratitude that is both fierce and beautiful, and I respect that more than I can say. This is not judgment, it is almost the opposite. I think those people may be stronger than I am in ways that matter here. They can say yes to that reality and live inside it. I know myself too well for that. I know I would think about the donor all the time, I would think about the family, I would think about the moment they got the call, I would think about the room they were standing in when their lives split in half. I would think about the unfinished coffee on a counter, the shoes by a door, the awful silence that comes after devastating news. I would not be able to package it into a clean medical story with a hopeful ending and move on. And then there is the money because medicine in this country never misses a chance to add financial violence to emotional trauma. A lung transplant is not just one surgery and then a soft focus miracle. It is a massive, brutal, life rearranging ordeal. The cost can run between one million and six million dollars. Then there are rejection drugs afterward that can cost around one million dollars a year. Insurance pays 80%, which sounds generous until you realize the patient is expected to cover the rest, and the rest is still enough money to make your soul leave your body and sit quietly in a corner, and for what is often described as an average lifespan after surgery of about five years. Yes, I know averages are not destiny. Some people get longer, some people do well. Some people gain years that are precious and beautiful and worth every difficult moment. I am not mocking that, and I am not dismissing what transplant can mean for the people who choose it. But I'm also not going to pretend it is some tidy fairy tale, where you wake up with new lungs and stroll into the sunset, feeling spiritually moisturized. It is surgery, risk, monitoring, medication, complications, bills, fear, rejection, recovery, more fear, and all of that sits beside a clock that never fully leaves the room. Then there's my wife. Honestly, that may be the part that weighs on me the most. Because when doctors talk about a huge intervention, what they are really talking about is never just the patient. They are also quietly volunteering the spouse for a full-time position in logistics, worry, caretaking, sleep deprivation, emotional triage, and paperwork, thick enough to stop a bullet. She would carry the waiting, the terror, the scheduling, the hospital time, the recovery, the setbacks, the watching for complications, the financial pressure, the daily uncertainty, the constant scanning of my face, my breathing, my energy, wondering whether today is better or whether something is starting to go wrong. People talk rightly about what the patient goes through. But serious illness is never a solo performance. It spills into the life of the person who loves you most and then acts like that is just a minor scheduling detail. And I cannot ignore that. It is one thing to agree to suffering for yourself. It is another thing to knowingly sign the person you love up for a long, exhausting, frightening ordeal, because medicine says there is still one more thing to try. That does not make me hopeless. It makes me honest. Because when I say no, I am not just thinking about lungs, I am thinking about prognosis, cost, recovery, rejection drugs, insurance, debt, stress, the emotional wreckage, and the burden on the woman who has already stood beside me through more than enough. And then there is the third reason, the one some people will hear and immediately decide I have become eccentric in a medically inconvenient way. I do not think I could emotionally handle living with someone else's organs inside me. There, I said it. I know some people hear that and immediately reach for science, and fair enough. I am not arguing settled biology here. I know the whole idea of cellular memory is debated. I know there is no agreed upon scientific proof that another person's memories come along for the ride like forwarded files on a hard drive. I get that, but understanding something intellectually and feeling peaceful about it are not the same thing. Organs are cells. Cells have history. They have belonged to someone else's body, someone else's chemistry, someone else's life. And I know myself well enough to know I would wonder. I would wonder what kind of life that person had. Whether they were kind, whether they were cruel, whether they loved well, whether they left comfort behind them, or damage. And yes, I know how this works. Organ donation does not come with a moral background check and a charming reference letter. Medicine is looking for healthy organs, not a saintly biography, I understand that. That is not a criticism of transplant medicine. That is just reality. But I am not a stainless steel tray, I am a person. So when I imagine someone else's lungs inside me, I do not think only about oxygen levels and tissue compatibility. I think about intimacy, debt, gratitude, fear. I think about waking up each day, knowing that the thing keeping me alive once belonged to someone who is gone. I think about whether that would make me feel saved, haunted, grateful, unsettled, or all of the above before breakfast. And the truth is, for me, it would probably be all of the above. That does not make me anti-transplant. Let me be very clear about that, because nuance has the shelf life of sliced bananas these days. I am not against lung transplant. I am not criticizing recipients. I am not diminishing donors, I'm saying I do not think it is for me. One of the strangest parts of chronic illness is that people assume the only respectable response is endless escalation, more treatment, more intervention, more fighting, more procedures, more heroics. As if the only good patient is one who is permanently charging uphill in a hospital gown, dragging an IV pole and shouting motivational slogans into the wind. But sometimes wisdom is quieter. Sometimes wisdom sounds like, no thank you. Sometimes wisdom sounds like, I understand what is being offered and I do not want that road. Sometimes wisdom sounds like, I am tired, but I'm not confused. Living with illness teaches you that survival and peace are not always the same thing. It teaches you that just because medicine can offer something does not mean it automatically becomes your destiny. It teaches you that every extension of life comes with a cost, and not all costs are measured in scars, prescriptions, or invoices with enough zeros to make your eye twitch. Some costs are emotional, some are spiritual. Some are the kind that sit beside your bed at three in the morning, asking deeply unhelpful questions. And I know there are people who would hear all this and say, I am giving up. I do not think I am. Giving up is indifference. This is not indifference. This is discernment. This is me looking at a possible future and saying, with respect and clarity, I do not want that version of being alive. That matters. Especially after chronic illness has already taken so much. Because patients lose enough, we lose privacy, spontaneity, energy, appetite, certainty, time. Entire afternoons to waiting rooms and fluorescent lighting and chairs designed by people who clearly hated comfort on principle. At some point, being allowed to decide what kind of medical life you can actually live with becomes its own form of dignity. And maybe that is what shook me so much about that question. It was not just about lungs, it was about identity, mortality, choice. Whether I saw myself as someone still chasing a giant next chapter, or someone who has already had a remarkable book and does not need an aggressively marketed sequel. Because I have lived. That is the truth I keep circling back to. I have lived enough to know that more time and better time are not always the same thing. I have lived enough to know that medical hope can be real and still not belong to me. I have lived enough to know there is nothing noble about forcing yourself into a future that feels wrong just because other people are more comfortable with treatment than with honesty. And after years of adapting, recalibrating, and learning how to keep a sense of humor while my body keeps pitching plot twists, I have become attached to myself as I am. Not the diagnosis, not the limitations, not the damage, me, the self I know, the self I have fought to remain. The thought of surviving by becoming emotionally tangled in a donor's death, an impossible financial burden, a mountain of medication and a medical process. I do not trust myself to carry peacefully does not feel like rescue to me. It feels like another burden. Maybe that is fear, maybe it is instinct, maybe it is selfishness, maybe it is all three of them standing in my kitchen, arguing while I try to make a decent latte. But they are my reasons, my body, my life, my answer. And after chronic illness has taken enough from you, that distinction matters more than ever. So no, I do not want to be on the transplant list. Not because I do not understand what a lung transplant can mean. I do. For some people, it is life. It is hope made visible. It is a chance worth every frightening second. But for me at sixty-four, after a full and amazing life, after years of illness and enough medical drama to last several lifetimes, I think my answer is still no. No to carrying another family's grief inside my survival. No to the emotional math of being kept alive by someone else's ending. No to the financial devastation. No to the burden it would place on my wife. No to a future that feels medically available but spiritually unlivable. Could that answer change someday? Maybe. Illness loves reminding us that certainty is a very temporary luxury. I am not carving this into stone with a tiny ceremonial chisel. But right now, this is where I stand. A new doctor asked the question. And maybe the most surprising part was not that she asked it. Maybe the real surprise was how clearly I already knew my answer. There is something oddly steady about that kind of clarity. Not happy, not easy, but steady. And when you have lived long enough inside illness, steady can feel a lot like grace. And that's one of the strange things about living with illness. On paper, it may be called rare, but once it shows up in your body, your lungs, or your heart, it stops feeling rare pretty quickly. Sarcoidosis is only rare until you're the one living with it. I'm Tate, and this is Thoughts While Surviving Chronic Illness. Thanks for being here. You can send a short message through the text link in the show notes, and I can read and reply there. Only the last digits of your number are visible to me. For longer messages, you can always reach out through the website. If you enjoyed this podcast, please rate, review, and share it. New episodes drop every Tuesday and Friday. So until next time, stay safe, be happy, and most of all, keep breathing.