Post Written by John Rost A Primal Transplant
Life with new lungs, sometimes it feels like we take three steps forward, then two back. At the moment I’m in the middle of the “two steps back” portion of the cycle. I’m experiencing a slow, steady decrease in lung function. My team is on the case, and I’m confident that we’ll get this issue lined out soon enough.
Let me take a step back and introduce myself. I’m a husband, father, and grandfather to a passel of awesome grandchildren. I’m also a bilateral lung transplant recipient. I had a disease called Idiopathic Pulmonary Fibrosis (IPF) that had begun to progress rapidly. My quick and easy answer to the question “What is IPF?” is that at some point in my history my lungs received an injury. We don’t know what caused that initial damage. Could have been due to some chemical, dust, or fiber I was exposed to while serving in the US Navy, or from something I was exposed to while I worked in industrial maintenance. What caused the initial damage doesn’t really matter, what matters is that my immune system went to work and repaired that damage as it is designed to do. The only problem is that my system never stopped working on the repairs. My lungs were being covered by scar tissue, getting thicker and shriveling up. Basically IPF was turning my lungs into raisins. I was placed on the transplant list on Nov. 4th, 2014 and received the call on Dec. 31st. My life with new lungs began on New Year’s Day, 2015. On the worst New Year’s Eve possible, 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.
The most common reaction I get when I mention that I have received a lung transplant is “Oh, I’m sorry”. This response used to confuse me, now I find it kind of funny. I am alive, and I wouldn’t be without this wonderful gift. My pre-transplant life pretty much centered around my supplemental oxygen. A walk around the block required 15 lpm of oxygen and I always took extra. I had a 6 pack case for trips to the store and loaded up the Jeep for anything longer. When I stood to walk across the room, my blood oxygen saturation would drop rapidly if I did not first increase my oxygen flow. My most exciting discovery after the procedure was when I noticed that my oxygen saturation actually went up from 97 to 100% when I would walk around the house. That moment made everything I was doing to recover from the procedure worthwhile.
There have been many wonderful moments since. Making memories with my grandchildren, sharing this wonderful chapter of my life with my Sweetie, and getting involved in the ePatient community. It is the moments that make life special, and this gift from my donor family has help provide many special moments for our family.
Three steps forward, two back. I left the hospital following the transplant on a feeding tube and not even able to sip water, but I was alive, breathing room air, and at home. I recovered my ability to swallow and the tube was removed. I was getting stronger when I had a moderate/severe acute rejection episode triggered by a simple Coronavirus. My Team did a wonderful job of resolving that issue and I was soon back home and getting even stronger. I’ve been back in the ICU due to Sepsis brought on by a UTI, then the ER from food poisoning from a sauce in a restaurant that had probably been sitting on the counter for awhile before being served. All setbacks, but all just a part of life with new lungs.
Life with new lungs involves committing to a life of planning your day around taking your medications, and a dedicated focus on infection control. My alarm is set in the morning to make sure I take my first of 6 doses of my daily meds on time. I take my vital signs and perform pulmonary function testing twice a day; it is all part of my new normal.
By now you are probably asking yourself what this has to do with the PinkSocks Tribe? It’s all about the special moments we experience and the people who are placed in our path precisely when we need them most. A couple of the side effects of my meds that can have an effect on my daily life are hand tremors and a bit of mental separation from the world. It is kind of like a plastic sheet between what’s going on in my head and the world. These effects intensify with stress. I attended Stanford MedicineX 2016 as a Design Tract ePatient. That was the most intense, immersive, and wonderful experience I’ve had the opportunity to be a part of. The long days and information overload had my side effects shifting into high gear. It took an effort to minimize the tremors in my hands and communicating with people was difficult. The pauses between my words seemed an eternity to me, but others have mentioned that they didn’t notice. Shows my effort paid off as MedX did provide a quiet room that really helped. I would go to it and do some box breathing to settle things down.
Following one of the presentations I was in the main hallway and my issues were pretty much at their worst. I saw this interesting bearded guy wearing a digital camo kilt and pinksocks with mustaches on them. In passing, as I was trying to find a quiet place away from the crowd, I mentioned “I really like your kilt”. The next thing I know I’m sharing a very wonderful, personal, moment with a new friend. He shared his story and told me that I was awesome. That simple moment, the kindness of a stranger, did more to calm my side effects than any amount of time I had spent in the quiet room. He gifted me a pair of pinksocks and introduced me to the PinkSocks Tribe. My pinksocks have helped me to share my story and tell others just how awesome they are. Love More. Fear Less.