I was officially diagnosed in 2013 with Idiopathic Pulmonary Fibrosis (IPF). With this disease it is difficult to determine how quickly it will progress, but once it starts it usually doesn’t slow down. I was placed on supplemental oxygen, first just while sleeping, and then in January 2014 I started using the oxygen during exertion as well. Because of the unknown progression of IPF it was recommended that I start the evaluation process for a lung transplant as soon as possible. After the evaluation process it was determined that I should be watched every 3-6 months to track my disease progression.
In September 2016, my oxygen saturation continued dropping and my supplemental oxygen needs kept going up. Patients with IPF can sometimes develop a horrible cough, which I did, and at this point I could not talk at all without having a serious coughing spasm. This led to my transplant team determining that I needed to be added to the UNOS transplant list at New York Presbyterian/Columbia and at Brigham Women’s Hospital in Boston.
Life with a New Lung
In January 2017, I was called into Brigham Women’s Hospital because there was a potential lung available for me. The next day, I was prepped and received a left lung transplant. Just 24 hours later, I was up and walking so I was moved out of the ICU and placed in another room where they could monitor my progress walking up and down the halls. I was sent home from the hospital on day six. Though I’ve had some typical small issues, overall, I did well the first year, and have not had any major issues with my donor lung since. Being in regular contact with my healthcare provider, and working as a team to address any challenges that came up before and after the transplant has been essential to maintaining my disease.
Before and after the transplant, I attended pulmonary rehabilitation and I try to stay active. Before my diagnosis I liked to power walk, so the rehab team encouraged me to continue that activity and even helped me participate in a 5K walk post-transplant. The Hartford Marathon 5K charity walk/run is something that I have done every year since 2017.
Other than that, post-transplant my life isn’t much different than it was before I got sick, there are some small changes. I need to take more medications. I can’t eat some foods that I ate before—like deli meats and medium rare steak/burgers. Every fruit and vegetable I eat must be thoroughly washed. I can’t have plants in the house anymore and I tend to avoid them outside as well. But since my transplant, I am no longer on supplemental oxygen. Unfortunately, because my right lung is in end-stage IPF, I still cough, but nothing like it was. I can once again do things we all take for granted like wake up in the morning and take a deep breath.
Helping Future Transplant Patients during the Pandemic
COVID-19 is very scary for me because not only can it kill someone with a normal immune system, but those of us with a suppressed or compromised immune system are at greater risk. The medication we take to decrease our antibodies so that our transplanted organ won’t be rejected also makes us more vulnerable to catching anything and everything. So, when considering getting the COVID-19 vaccine or treatment, I was concerned about increasing the possibility of organ rejection.
I decided to join the Johns Hopkins Transplant Vaccine Study Group. They take blood to check my antibodies because I’m immunosuppressed. The study looked at the effectiveness of the COVID-19 vaccine and if it protects patients like myself, and for how long. I have received four full dose shots of the Pfizer COVID-19 vaccine. In February, I received the Evusheld preventive treatment which helped raise my antibodies significantly. But antibodies are only one part of what offers protection, T cells and memory B cells also play a big part in that. The study includes all solid organ transplant patients and the data gathered has not shown any organ rejection, but that doesn’t mean we should put our guard down. However, the study has given me hope that I can survive this virus if I get it is better than if I hadn’t gotten vaccinated.
During the pandemic many people have had the unique opportunity to better understand the fears transplant patients have of becoming ill with serious respiratory infections. Keeping distance, wearing masks, an emphasis on hygiene, etc. was the norm in the height of the pandemic. Now that restrictions are lessening, I hope people will continue to be cautious, kind and more understanding of people choosing practices that will help keep them safe.
Blog last updated: August 21, 2023
