Barbara Holden: Train Adventure to Double Lung Transplant

“You may remember my 1,200-mile trip from Florida to Massachusetts, by train, in September 2017. A lot has happened since then and I thought I would share my journey.

“In 2007 I was diagnosed with diffuse scleroderma. Then in 2012 I was diagnosed with pulmonary hypertension (PH), secondary to scleroderma. My scleroderma has mostly attacked my internal organs. My esophagus is 100% paralyzed and I had interstitial lung disease which caused my PH. My lung disease became so bad that I was on eight liters of oxygen at rest, 15 liters on exertion, which made doing things difficult.

“In 2017, after my great train adventure, my pulmonologist recommended a lung transplant because of the progression of the lung disease. I went to the transplant center near my home in Florida. All transplant centers are different and have different criteria. Because of my scleroderma and esophageal dysmotility, I was turned down. In 2018 my case was forwarded to several other transplant centers; half rejected me right out of the gate. I wasn’t discouraged as I knew this was the path I needed to be on. Fortunately, Massachusetts General Hospital (MGH) in my home state agreed to take a closer look at my case. I temporarily relocated to Massachusetts and I was fortunate to be able to stay with family as I underwent testing. Because my case is complicated, testing was slow. It was during the testing that it was discovered that in addition to the lung transplant, I would need heart bypass surgery. Eight months later, after all the testing and meetings with doctors and the surgeon, MGH agreed to put me on the National Transplant Registry. Boy, what a range of emotions I had! Less than a month later I received THE call and had my double lung transplant and heart bypass surgery. It’s been seven months since my transplant and I am doing great! I no longer need supplemental oxygen and I no longer have PH; I’m able to do things I haven’t been able to do in years. My doctors are happy with my progress and have given me permission to begin training to walk a 5K in September.

“I feel so blessed to have been given this second chance opportunity. It never would have happened had it not been for someone who became an organ donor. It is such a wonderful, giving and selfless thing to do. I think of my donor and their family every single day; and I hope to meet the family one day so I can thank them in person for saving my life. Thanks to my donor I can continue to raise awareness for PH, scleroderma and now organ donation.

“The moral of my story is first, as a very good friend of mine says, you can do hard things. We are warriors! Second, don’t ever give up. Advocate for yourself. Push for what you want and/or need in your life. We deserve a great life and if we don’t push for it, who will?”