Administrators Joachim Schreef Maart21 , 2022 Administrators Share Schreef Maart21 , 2022 I was unexpectedly hospitalized in February 2020 after several days of feeling weak and more out of breath than usual. Given my pulmonary sarcoidosis, my healthcare team decided to admit me for observation. I had spent the previous month being tested and evaluated for a lung transplant. I had to complete over 60 blood tests and meet numerous times with the transplant team, social workers, pharmacists, nutritionists, and what seemed like the entire hospital staff. Needless to say, it was a daunting experience, but one I had agreed to. Another fine mess I’d gotten myself into! During my stay, I visited with several other doctors and my primary pulmonologist, with whom I have a great relationship. We’re both honest, and he’s the kind of person you can hang out with after work. Recommended Reading March 11, 2022 News by Lindsey Shapiro PhD New Registrational Trial Upcoming for Efzofitimod After Positive FDA Feedback All seemed to be going well. Doc came in one day and shared that my test results looked good. My symptoms were likely just a flare-up, and I simply needed to increase my vitamin D intake. However, he then told me that the transplant team had concluded that I wouldn’t be a good candidate for transplant. Although my stats looked great, they believed I was too high risk. While I heard what he was saying, I wasn’t truly listening; there’s a difference. We discussed a few options I could investigate, but our conversation took everything out of me. I felt empty. After all the tests and meetings, the decision didn’t come down in my favor. “What do I do now?” I wondered. My pulmonologist told me that if I were to get a transplant at a different medical facility, my current team would still treat me as a lung patient, which made me feel a little better. Fast-forward to 2021, and my status hadn’t changed. I was still considered a high-risk candidate for a lung transplant. I met with a different team to get a second opinion, and after enduring another week of testing at the new hospital, I was told I’m too frail to be a candidate. That was the most humiliating and discouraging thing I’ve heard since my school years. I became so angry that I made it my personal goal to prove my team wrong. In fact, I was determined to prove everyone wrong, even if I didn’t know who “everyone” was. I didn’t know how I’d accomplish this, but I knew I would do it. As my mother used to say, “I’ll shovel snow with a spoon before I admit defeat!” Let the games begin. I convinced the new hospital to enroll me in their pulmonary rehab program. I’d show them what frail looked like. Out of 13 sessions, I only missed one because of a snowstorm. Luckily, I didn’t have to shovel snow with a spoon. I did the work in the sessions, and on my off days, I went to the gym. Still, it looked like I couldn’t reverse my team’s decision. I got angry again, and post-traumatic stress disorder got the best of me. As I thought more about the decision, it became apparent to me that the doctors didn’t want to take any unnecessary risks with my condition. My quality of life would be in their hands, and honestly, if I were in their shoes, I don’t know that I would accept that responsibility and take the risk. After my team explained the “what ifs” to me, their decision made sense. I wasn’t angry at the doctors, I was angry at the way the situation played out. But either way, I was still angry enough to work harder to improve my health. Sarcoidosis will make you angry, but it’s up to you to use that challenge in a constructive way. In the end, I’m thankful that the doctors had my best interests at heart. The only thing I mentioned to my primary pulmonologist was that I wished I had someone to talk to following the decision. Sometimes it’s hard being your own advocate, but if you’re not, who will fight for you? Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis. The post My Anger Motivates Me to Work Harder appeared first on Sarcoidosis News. Link naar het originele artikel Link to comment Share on other sites More sharing options...
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