![]() In June 2023, I had two bouts of massive hemoptysis (coughing up blood) that eventually led to an emergency double lung transplant on July 5. I didn't know until it happened to me that massive bleeding could lead to lung transplant, so I want to take some time to discuss it here. The truth is, this is a scary story. I haven't wanted to share it with my readers because what happened to me was very, very unusual and probably won't happen to any of you. I don't like stoking fear in people who already have enough to be afraid of. However, I am usually of the opinion that knowing what the worst case scenario is can help us prepare and also feel less stressed in situations that are slightly less bad. So I’ll leave out most of the gory details here (which are honestly zombie movie worthy). In this article, I summarize what actually occurred, how I prepared for transplant, my experience receiving the transplant, and how I’m doing one year later. The Event
Hemoptysis is a big fear for many CFers. As previously discussed in my first article on hemoptysis, bleeding in the lungs occurs when bronchiectasis (scarring of airways) weakens them to the extent that they break and the arteries that run alongside them bleed into the airways, causing us to cough up blood. Bronchiectasis happens with chronic inflammation and/or infection in the lungs. Most people who cough up blood only cough up sputum streaked with blood, or a teaspoon at a time of pure blood. Although this is scary enough, this is a small amount and not dangerous, however it's always a good idea to talk with your pulmonologist about it. When hemoptysis progresses to a volume of around a half cup or more, this is considered to be significant and probably needs intervention. More than ten years ago I needed such an intervention: a pulmonary arteriole embolization. This is a procedure where under interventional radiology, a tube is guided up the femoral artery in the groin up the lungs, and microscopic pebbles are shot into specific pulmonary arterioles to block them up, hopefully preventing bleeding in that area of the lung. Back then, my intervention was successful and I didn't have any significant bleeding for years and years. When I was on Symdeko, then Trikafta, I had no bleeding at all. So I found it very odd that I was having streaked mucus for a week in early June 2023. I had a cold about a month earlier that settled in my lungs, and I tried a round of keflex, then augmentin, to kick the low-grade infection. I was feeling mostly normal but a little tired. Nothing too weird. But the antibiotics didn't seem to help. Then one night when I laid down to go to bed, I felt that familiar bubbling feeling in my chest that told me I was about to cough up blood. I sighed and thought, “Well, here we go again.” But to my confusion, then horror, it didn't stop. Luckily my housemate was home and he drove me to the local ER immediately. David, what a lifesaver! (sorry I got blood all over your car though man, my bad). By the time I got to the ER the bleeding had stopped and I was ok. Shaken, but ok. I'd guess I coughed up at least two cups in total (four cups or 1 liter is potentially fatal, I was told). What helped me a lot in the midst of this emergency was the advice my doctor gave me years ago: if you're having a massive bleed and you can tell which side is bleeding, lay on the side that's bleeding so that if that lung fills up, you still have air going to the other lung. I was stabilized (given inhaled tranexamic acid) and immediately transferred to the bigger regional hospital by ambulance. At the hospital, I received an urgent pulmonary arteriole embolization the next day, and they believed they plugged up the spot that was bleeding (it's hard to tell for sure, but it's likely they got it). I stayed in the hospital for another ten days and got IV antibiotics, assuming the bleeding was due to a bacterial lung infection that we hadn't been treating aggressively enough. During my stay, my doc casually raised with me the issue of lung transplant. "There are two main reasons why some CF patients need lung transplants,” he said, “slow decline of lung function, and uncontrollable hemoptysis that doesn't respond to embolization. Not that you need it right now, but if this happens again or worse, and embolization doesn't work, we may need to think about it." I brushed it off and yearned to get home as soon as possible. I was getting better and set to go home on IV antibiotics. But I was a little ambivalent because we didn't know for sure that a bacterial infection was the cause (my sputum cultures were completely negative of anything), and I was still coughing up teensy bits of bright red bloody mucus, which I thought should have disappeared by that time. In the early morning on the summer solstice, the day I was set to leave, I had another massive hemoptysis, except this time worse. Again, I won't give details, but it was extremely scary. A CT scan showed that this second bleed had not been from the spot that was embolized a few days earlier. The reason why it bled again is that if enough of the lung is embolized, the blood in that lung is redirected and the pressure builds up until it breaks through a weakened airway in a different place. It's like if you plug up a branch of a stream, the flow of the water builds up speed and pressure in the other open branches. This doesn't always happen (it didn't for my first embolization), and even if it does it's rarely as extreme as I experienced it. My doctor had never seen an example this bad before. I'm guessing that my lungs are just particularly predisposed to hemoptysis, and we had known for years that my lungs had over-grown vasculature (a response to low oxygenation from mucus plugging) which made them extra vulnerable to bleeds. After this second massive bleed they did an emergency embolization, this time embolizing about 90% of my left lung, basically anywhere that there could be any possible risk of leakage. When I woke up a day later, I discussed with my sibling and my doctors what my options were. There were only two really: leave things the way they are and probably have another massive bleed and die from it; or take my chances with a lung transplant. Neither choice was going to be easy. Even then I needed to crack a few jokes to lighten the gloom of the situation I was in (I demanded my doc give me an “I Survived the Gnarliest Shit” award complete with sparkles and rainbow streamers). But that ICU conversation with my favorite CF doc (who is also a good friend) and my sibling was one that dredged my soul. Most people who get a lung transplant have several months of testing, talks with family and friends, and education sessions from the transplant team. I had none of this. I had to make a decision within several hours whether or not to be medivac'ed to the transplant center in NYC the next day. Again, this was an extremely unusual case. The truth is that for years I thought I would refuse a transplant if I needed one. There were a lot of psychological factors influencing this, most especially years of chronic low-grade depression and self-worth issues that made me feel unworthy of all that effort. Also, there was some philosophical puritanism which I’ve largely dismantled, recognizing it as capitalist-colonial manipulation. Luckily I had done lots of work to get over these psychological problems by the time this emergency happened, but it still wasn't an easy decision. The temptation of taking a break from all this scary life-struggle stuff was very real at the time. I could write a whole essay just on that, but I'll spare you. Anyway, once I got on Trikafta in 2019, I was sure that I’d never have to have the transplant discussion again. I had responded very well to Trikafta, gaining about 10% lung capacity over a year. My health stabilized and I thought I could have lived like that easily for the rest of my life. So what caused me to suddenly lose all the ground I had gained with Trikafta? What sabotaged my progress? I can’t say for sure, but there are at least three potential factors. First, as I mentioned, over many years my lungs had responded to oxygenation problems by growing way too many blood vessels, increasing my risk of bleeding. Not every CFer has this issue, you tend to go in that direction or not, and I was in the former category. So in theory my lungs could have developed a “ticking time bomb” (a weak vessel on the verge of collapse) before I ever got on Trikafta, and it was only a matter of time before the dam broke. Secondly, in February 2020 I caught COVID-19 before most of us were aware of its existence and before governments in the U.S. were even testing for it. I thought it was just a very bad flu, but it tested negative for the flu and all other respiratory viruses on file, plus it had all the unusual symptoms associated with COVID-19. I caught the first and most deadly strain with the most long-COVID symptoms associated with it. It gave me pneumonia and I would have died if I was not hospitalized. I experienced about 9 months of long-COVID symptoms after that, including permanent partial hearing loss in the left ear, heart arrhythmias, PTSD, and more. There’s no doubt that my lungs were severely stressed by that experience, and I know that some elderly folks who caught COVID had to get lung transplants due to the damage it wrought (I met such a man in the NYU transplant department). Luckily I haven’t gotten COVID since—I’m still very wary of it, for obvious reasons, and I still mask in public indoor spaces and take serious hygiene precautions, even more so now that I am on immunosuppression drugs. Thirdly, as I learned after the old lungs had been removed and biopsied, they discovered a “fungal ball” in the left lung that had bled. Fungal lung infections and hemoptysis are correlated. That doesn’t mean all bleeds are the result of fungal infections, but those with fungal lung infections (especially Aspergillus spp.) are more likely to have issues with bleeding. The problem is, fungal infections are very difficult to diagnose because fungus often doesn’t show up in cultures. About ten or more years ago I grew mold a couple times in my cultures and then it went away, or so we thought. The only way to really know it’s actively there is with bronchoscopy, and those suck and should not be performed on a whim. So basically, I was never diagnosed with a fungal infection, yet it’s pretty clear to me that I had one. I don’t blame my doctors for not catching it in time… it’s just one of those shitty things about fungal infections—they’re hard to diagnose and hard to treat. Right before last year’s bleeds happened I had moved a bale of moldy hay and sprinkled it on my garden. I’ll never know if that was connected to the bleed, but regardless I’m staying the heck away from moldy hay for the rest of my life! Pre-transplantation So there I was in the ICU after the catastrophic bleed, weighing the biggest decision of my life. After receiving wise and compassionate guidance from my sibling, Kenzie, about whether or not to move forward to transplantation, I decided to do it. I realized in that hospital bed that I was making a decision not just for myself but for the dozens of people that I love and am connected to. In essence, I realized that I am not an “individual”, but simply a node in a network, and so in that critical moment I was making a decision for a wide network of relations, human and non-human alike. I had to consider what they wanted and what was best for them, too. That swayed my decision towards transplantation. The next day I was flown in a tiny airplane accompanied by two nurses to NYU Langone Lung Transplant Center in New York City. I hate planes, plus I was totally terrified of bleeding again, so I (easily) convinced them to let me take anxiety meds for that journey. It went fine. I spent the next two weeks in NYU Langone’s medical ICU recovering, getting pre-transplant tests and scans done, and having daily discussions with the transplant team. I can’t recommend them highly enough! Really, if you are on the east coast, I think you basically can’t get a better team than NYU Langone. I am a special case for many reasons, and they fit the bill for all of them. The whole process went almost as smoothly as it could have—strangely so, for there were many synchronicities and several unexpected turns in my favor. One of them was that this just so happened to be the very hospital where I had my FTM top surgery in seven years before! Another gift was that my transplant team was very queer-affirming and interested in my experience as a transgender person with CF (and now transplant). I can’t tell you how much that put me at ease in this extremely precarious point in my life. Also, I have extended family and friends within a few hours from NYC, which allowed them to visit me in the hospital so far from my home in Vermont. They helped me secure housing and the social support I needed post-transplant. Those two weeks I spent in the NYU medical ICU recovering and preparing for potential transplantation were a strange and liminal time-space. I had recently lost a nearly-fatal amount of blood and had received a transfusion in Vermont. I was very weak and couldn’t stand, let alone walk, without help. I have never been that weak in my life. For that first week in the ICU everything was hard: it was even hard to look at screens, to speak, to wash my face, or to focus on any one thing. (Thank gods for audiobooks!) My left lung was essentially non-functional, and the right lung still had residual old blood to hack out, so I was pretty out of breath. I also was too afraid to sleep lying down (because that could trigger bleeding), so I sat up most of the day and night. I was afraid to be left alone for too long. But by the end of the second week, with the rehab and me eating as much beef as I possibly could (to build back the blood), I felt much stronger and was walking loops in the ICU. On occasion I even forgot that I had basically died less than a fortnight before. It’s nuts how quickly human beings can bounce back from intense physical trauma! I began to think: maybe I could live the rest of my life like this… I can still walk, I can think and read and write. Is this good enough? Maybe I don’t need the transplant. Then I remembered that I could bleed again at any moment. Every time I was wheeled to a test in another part of the hospital, a nurse accompanied me with a giant syringe of epinephrine and a rescue kit for massive bleeds. So I had to keep moving forward. Ironically, I was doing so well by the end of those two weeks that there was talk that I could be kicked out of the ICU. That would make the transplant listing a lot harder; plus I felt so much safer being monitored constantly, and I had nowhere to stay close to the hospital. Act sicker! they said. That’s not the first time I’ve heard that command! If you’re a CFer you’ve probably heard that one too. Social and medical services are often delivered contingent upon how sick you look. I’m very skilled at hiding my illness (been practicing my whole life), so I tried to remember to ham it up every time the charge nurse visited. I will say that the hardest part of this whole process of pre-transplant was preparing a post-transplant plan for housing and home-care. I don’t have a life-partner (intentionally), which would have helped in this situation. My sibling Kenzie did a huge amount of work coordinating several months of home-care and housing located within two hours of NYU hospital once I was discharged. I needed at least three months of 24/7 caregiving post-transplant. We figured out a complicated schedule of 2-week shifts filled in from family/friends from all over the country. There were a lot of unknowns in this whole process, including that we didn’t know how well I’d respond to the surgery nor when I would be discharged post-transplant. I might go home in three months or six months (or longer if things went bad), we didn’t know. Figuring out these logistics was the main barrier to me getting listed for lungs. Given that Kenzie was a few hundred miles away juggling several jobs, two young children, and communications with all my friends and family (I was too exhausted to communicate with the outside world), they did a truly amazing job and endured an enormous amount of stress. We also had to raise money to cover living expenses while I was away from home (below I share my thoughts about how to do this properly… I made some mistakes which temporally cost me some disability benefits). All the docs raved about Kenzie being the best medical advocate anyone could ever ask for. I am so lucky! 💚 (BTW, check out their herbal practice here: Wild Faith Herbal Wellness). Eventually we figured out a plan solid enough that we got the approval from the transplant team’s social worker. The next morning I was listed for lungs. The day after that was July 4th. I had just eaten dinner and was preparing to shuffle down the hall to look out the windows at the East River where the city’s fireworks display would be launched (literally just outside the building). A nurse popped her head in suddenly. “Guess what?” she exclaimed, her face bright with excitement. My heart did a somersault—I knew what she was going to say next. “You’ve got lungs! Surgery is tomorrow morning.” I laughed nervously and tried to hide the shaking in my hands. Transplantation didn’t feel like it would ever really happen until that moment. I was bombarded by waves of hope and anxiety both. Would I survive the surgery? What if the lungs are a bad match? After trying desperately to distract myself with logistical preparations, I gave up and went to go watch the fireworks exploding less than a block away. It felt like an auspicious send-off and a good omen. Transplantation The actual surgery took three days. It took so long because I had had pleurodesis in both lungs, which makes it harder to remove the old lungs and causes extra bleeding, requiring an extra day of keeping the chest open and packed to stop the bleeding. My primary surgeon, Dr. Stephanie Chang, was an absolute pro and had dealt with this issue before. I had complete trust in her, which is rare for me. From the moment I met her I knew that she was extremely skilled and perfectly capable of saving my life. And she was very pregnant! What a badass. For a few days afterward it was a blur of pain and meds and tests and coming down from the anesthesia. This first stage of recovery was HARD. On a couple occasions we timed the pain meds wrong and I experienced the worst pain of my life (worse than pleurodesis if you can imagine). One of my docs had said that receiving a lung transplant is as physically intense as running a marathon, and I think that’s true to some extent. Luckily, I had been exercising a lot just before the bleeds occurred, so I was as physically fit as I could have been. However, I lost about twenty pounds of weight (including muscle) during my time bed-ridden pre- and post-surgery, and it was really hard to eat for several days after the surgery. Eventually things stabilized though and the pain reduced. Tacrolimus is an intense drug and I had some side effects from that (like headaches and visual auras) but that also stabilized. I regained some strength and by the end of my time in the surgical ICU, I was doing long laps around the ward again. My parents and a couple close family-friends visited me in the hospital. I made a rapid recovery and by July 20th I was cleared to move to a temporary stay in Brooklyn. Then began the next phase of my recovery, close-ish to the hospital with frequent office visits. I hopped around to a few rentals and found a place in Connecticut near family for about two months. In August, I felt well enough to take a trip back home, but I didn’t tell anyone I was coming. I wanted to surprise all my friends—and I sure did! I even surprised Kenzie by showing up at a local queer craft festival I knew they’d be going to. That was the best surprise I’ve ever finagled! I hadn’t seen them in about two months. Overall, I had recovered remarkably quickly, and by mid-October, I was cleared to go home earlier than expected and without home-care. Those first couple weeks sleeping in the bed where it all began were nerve-wracking. I wasn’t quite sure I was ready to be on my own again, but I live in a communal house with lots of people around so I felt physically safe if I needed help. But the psychological factor took some time to heal. Lessons Learned There are three pieces of advice I’d give people who are thinking about or preparing for lung transplantation. First, be as fit and healthy as you possibly can be going into it. That means eating well, exercising, maximizing sleep, and minimizing stress. In particular I believe weight lifting to be very important. Lifting weights, even small ones, can boost lung function and oxygenation, and prevent the kind of muscle loss that can occur when we’re unable to be as active as we once were. Lifting weights or doing weight-bearing exercise is more effective than cardio in this way. The stronger you are going in, the faster you can progress with post-transplant physical therapy and rehab, and the sooner you can go home. Gain as much weight as you can going into surgery because you will lose a lot of it. Second, write or revise your advanced directive and choose your medical advocate/ proxy very carefully. Like today—do it today. Actually, everyone reading this post should do this right now, whether you’re sick or not. Accidents can happen at any time. The fact that I had a revised advanced directive on file at my hospital was an extremely smart move on my part. After the second bleed I was unconscious for over a day and couldn’t make medical decisions, so the hospital called my medical proxy to make those decisions (i.e. to get another embolization, stay on a respirator, rescue me if I bled again, etc.). I had wisely chosen Kenzie as my medical proxy, who read my advanced directive carefully and thought very hard about what decisions I would make for myself in that situation. Other family members might have wanted to be my proxy but they were unsuitable for multiple reasons. Kenzie defended their position and my wishes. It’s really important that your medical advocate/proxy knows what you want and is someone who is capable of honoring your wishes over their own personal desires for you, should they conflict. Be as clear as possible in that document to make their job easier. I’ve had an advanced directive on file at my hospital for over fifteen years, and the first several versions were a little puritanical and naïve (the older and more medically-experienced I became, the more I was willing to make temporary concessions towards use of life support—thank goodness!). It’s fine to revise and resubmit it as needed. I’ve revised mine several times, and revised it again right before I got my transplant. Third, if you’re receiving SSI disability benefits, don’t use GoFundMe (or anything similar) for raising money! Not only does GoFundMe take a big chunk of the prize, but any money you receive as a gift which is used for food, housing, or anything else that SSI is supposed to pay for will reduce the amount you’re given in SSI. The money you raise through a GoFundMe campaign is considered “unearned income” and can push your income and assets over the limit allowed for SSI, Medicaid, and food stamps. For many disabled people with Medicaid as a secondary health insurance, it is received dependent upon you receiving SSI, so if you lose SSI you lose Medicaid. There’s a lot of technical details here that I recommend discussing with a CF/disability lawyer, especially Beth Sufian. LISTEN TO HER ADVICE and be very careful! The SSA is really hoping we will make a mistake so that they can kick us off disability. Ever since the Trump administration first began eroding social services, the SSA has been forced to find ways to revoke benefits from people for any reason they can. Don’t give them a reason. The money I made from the GoFundMe campaign triggered the SSA to give me a financial review only a couple weeks after the biggest surgery of my life. Like I needed that added stress during my acute recovery phase! Luckily, I was able to keep my benefits with a temporary penalty, but I was very worried there for several months. Be aware that there is A LOT of bad advice and wrong information on the internet about medical fundraising related to SSA benefits, including that published by the SSA and GoFundMe! However, the bottom part of this article has some accurate basic info. In general, I think the only person you can really trust on this topic is a disability lawyer with a lot of experience in this area. Also, be sure to keep track of expenses and receipts during the recovery time, because that could help apply for grants or reimbursements. Instead of GoFundMe there are two good choices for raising funds. First, try to find a medical fundraising service that passes money through an organization without you ever actually holding the money. I can’t remember the names of these but a good CF social worker can help you find one. Be aware that due to the extraordinarily extractive, expensive, and inhumane nature of the capitalist private medical insurance system in the U.S., medical crowd-source fundraising has become a profitable industry. Choose your platform wisely—many companies are out to make a buck off of people in desperate situations. Also, if you apply for transplant grants (which you should) see if they can pay for your expenses directly rather than giving you the money. And if you’re on disability the SSA doesn’t want you to receive any funds that are to be used for the things the SSA gives you money for (i.e. rent and food). I used my grants to pay my friends to care-give for me. Double-check with a CF/disability lawyer on this topic—getting expert advice is critical here. Secondly, if you are federally-designated as disabled and you meet the age criteria, then you can create a STABLE (a.k.a. ABLE) account, which is basically a SSA-approved savings account that allows you to accumulate more than the practically-medieval $2,000 resource limit imposed by the SSA. A STABLE account allows you to save somewhere around $17,000 per year (depending on the state) and use that money for approved expenses including food, rent, and education. This was a frickin’ life saver and I wish I had made a STABLE account years ago! Every state has a different way of administering it, so you can learn more here. One-year Post-transplant My recovery has been remarkably successful and fast, or so I’ve been told. I haven’t had any signs of rejection nor any real infections yet. There are a lot of factors that have played into this, including all the care and generosity that my family, friends, and community have shown me, and the fantastic medical care I’ve received, so I can’t take all the credit. I am very privileged. Also, I think my new lungs are an exceptionally good match for me, and I have many times given ritual thanks to the person who created them. My current FEV1 is around 3.25 Liters, or 110% FEV1. Yes, you read that correctly. I have never had lung function this good in my life! Never. I am regaining the physical strength that I lost from the surgery and becoming active again. On the other hand, the transplant drugs are intense (especially tacrolimus) and my kidneys are not happy about them. I am constantly navigating electrolyte imbalances and kidney stress as a result. Once the tacrolimus dose drops at the one-year mark I am hoping that this will relieve my kidneys of this side effect. Any Questions? Although this is a long article there is a lot I’ve left out. If you have any questions about specific pieces of this journey that I haven’t mentioned, or want me to write about an aspect of my experience in greater depth, please let me know and I’ll perhaps write a second article about them. For example, I have some things to say about diet, herbs, and medications related to transplant, so I could write about that if people are interested. I also accepted Hepatitis-C positive lungs and had to treat it twice before the virus eventually went away for good, so I could explain that as well. Lastly, I am still incurring expenses related to recovering from my transplant, so if you are able to donate anything I would greatly appreciate it, especially if you are a long-time reader of my website and appreciate the work I have done (mostly for free) to bring alternative health and herbal education to the CF community. Thank you!
2 Comments
Mary Fettig
6/24/2024 05:00:18 pm
Mica, you are such an amazing person and this article is incredibly well written, informative, and inspirational. I imagine all the positive energy coming from sharing this personal journey and know it will be lifesaving to some. Hope to see you soon, love Mary
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Genevieve Drutchas
7/6/2024 05:58:26 am
Your story is so amazing, Mica. Huge props for sharing it and for sharing the wisdom you've gained from these intense challenges. The practical details of how to manage something like this ~ woah, so real and important. It's incredible to think about all the good will, expertise, love, family and community involved, as well as the drive and skill of the experts to do what they can do for us in so many situations now. I cheered for your surgeon. Loved the detail about them being pregnant. And cheers for Kenzie. What amazing love and support. And huge cheers to you! To say it's been inspiring to witness your resilience and going with it feels like such an understatement, so cheers with lots of sparkles and rainbow prisms disco-ing all around them and Chaka leading us all in song.
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Mica (they/he) is a clinical herbalist, nutritionist, researcher, and writer living in Abenaki territory (Vermont). *************************** Disclaimer: The content of this website and blog is for educational purposes only and should not be considered medical advice. The information provided here is not intended to replace medical care. Archives
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