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The gift of life: Living with new lungs

lungsWhen I mention to people that I had a double lung transplant, they usually react in one of two ways. They're likely to say, “Wow, I’ve never met someone who’s had a lung transplant -- that’s awesome," or  “Oh, I’m sorry." The latter used to confuse me. Sorry, for what, I wondered -- the fact that I have a second chance at life? Now I get a chuckle when I hear that and take the opportunity at sharing how amazing organ donation can be for both the recipient and the donor family.

I had idiopathic pulmonary fibrosis (IPF), a progressive lung disease that presented as an uncontrolled scarring of the lungs. There is no cure, and at the time no approved treatment options. I was left with the choice of visiting a transplant center and being screened for a very invasive and scary procedure, or letting the disease take its course. This was a much more difficult decision than those not facing it might think, but that's a topic for another day.

My disease began with a relatively slow progression, but when it decided to move things along, things moved quickly. I was listed for a bilateral lung transplant on Nov. 4, 2014, and after one dry run, I received “the call” on Dec. 31. On the worst New Year’s Eve possible for them, my donor family made the decision to offer the gift of life to strangers who desperately needed it. They are always on my mind and in my thoughts.

My life with new lungs began on New Year’s Day, 2015.

Life with new lungs isn't really a life you can prepare for through reading -- us patients have to learn how to live our new normal through experience. The first thing we learn is the new routine: I now take my medications six times a day, and I check my vital signs including basic pulmonary function testing twice a day. I also came to find out that the transplant team becomes like an extended family. During the first few months post-transplant, patients spend more time with them than most members of their biological family.

For me, the most important lesson of life with new lungs is the need to be resilient. All lung transplant recipients have setbacks, and sometimes I feel as if I take three steps forward, and then two back. Since my procedure, I’ve experienced a moderate/severe acute rejection episode, landed in the ICU with sepsis that was brought on by a silly little UTI, and visited the ER with food poisoning from a bad Pontcharain sauce. But I’ve also experienced the awesomeness of making new memories with my grandchildren, performing my 10,000th hardstyle kettlebell swing, and enjoying this wonderful chapter of life with my sweetie.

The precious gift granted by my donor family has also allowed me to become more active in helping to raise awareness of IPF and the need for people to register as organ donors, and to help those who are new to this horrible disease or are interested in pursuing a transplant. I've also enjoyed the opportunity to attend Stanford Medicine X in 2015 and 2016, and my time there gave me hope that patient-centered medicine will become more than a tagline. I believe that the ePatient’s voice is becoming more important to the health-care community, and that future methods of research will rapidly advance our knowledge of how to effectively treat, and -- even better -- prevent, more and more diseases. The future is bright.

I started this article from the comfort of my own home and am finishing it up on the 10th floor of UT Southwestern University Hospital. My lung capacity has been slowly, yet steadily, decreasing -- so here I am. This is just part of life with new lungs -- two steps back -- but I’m excited to see what my next three steps forward bring.

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.

John Rost is a husband, father, grandfather, and Idiopathic Pulmonary Fibrosis survivor. He received a bilateral lung transplant on January 1st, 2015. Alive thanks to his donor family, he shares his life with new lungs on the blog, The Primal Transplant, and on Twitter as @Jrost

Photo by Hey Paul Studios

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