Hi :) my name is Leighton and I'm from Maine. When I was 12, a doctor had found something was wrong with my heart but wasn't quite sure what. I was misdiagnosed with Mitrovalve-Prolapse until I was around 16. after being a "guinea pig" for several years, getting blood work drawn every 2-4 weeks, going in every month for different random tests, and visiting with many heart and pulmonary specialists... It was finally discovered that I had "Primary Pulmonary Hypertension" (or PPH for short). I was then told I would not live to be twenty.
Luckily by the time I was 19, they had come out with a new medicine called "Flolan". Flolan is an interveinous medication, mixed up daily and delivered through a medical pump that you would wear in a fanny pack or pouch 24 hours a day, 7 days a week. It did the trick for a while. It kept me alive and somewhat stable until last year. PPH is basically a pressure in the lungs that is so high, that it screws with how your heart delivers oxygenated blood to the rest of your body and causes severe damage to the heart as it enlarges and continuously decreases in functionality. Last year I started having intense chest pain of all sorts. I went to my cardiologist who suggested I start getting serious about looking into a heart/lung transplant. The tricuspid valve in the heart (not the mitrovalve) had been leaking and now was failing and tearing apart. My whole heart was enlarged and surrounded by fluid. So last summer I was 26 years old and given about 2 years left to live. I was referred by my doctor to go to the Cleveland Clinic in Ohio. They are one of the best hospitals in the nation especially when it comes to transplantation (of many kinds). They have some of the best Surgeons from around the world! It took about 4 months of fighting with my insurance before they decided to let me get treated at the Cleveland Clinic and then I was finally able to get in. I then started the process of getting on the Double Lung/Heart transplant list. After traveling back and forth to Cleveland for several months, and after test after test after test, I was finally put on the Heart/Lung transplant list. Four months later on June 28th, 2010 I was successfully transplanted in Ohio. Things went unexpectedly well, though I did have Hundreds of people praying for me and my support from everyone was huge (THANK YOU ALL AGAIN!!!). I was in the hospital for 2 weeks and was discharged. I was able to continue recovering at the Ronald McDonald House for another 2 weeks and then was able to come back home to Maine!!! And now, even though I have some restrictions like a 20 pound weight limit, some shortness of breath on occasion. and a new routine to follow... I'm home and enjoying life!
Aug 04, 2010
Oct 19, 2011