Well, this all came about because I was born with a hole in my heart which caused a disease called Pulmonary Hypertension- a potentially terminal disease with no cure but only medicines to keep the patient stable. After exhausting all of the options for Pulmonary Hypertension but realizing my disease was still progressing, the only option left was a double lung transplant. On October 5th, 2010, I received a double lung transplant and heart repair. This surgery saved my life, it ended my fight with pulmonary hypertension and I was finally free from IVs, oxygen, worry and fear. For a little over a year and a half, I was the healthiest I have ever been in my entire life. I could run, I could climb stairs, I could live on my own, most of all- I could LIVE. I finished school, I started to give speeches to advocate for organ donation awareness and PH awareness. I was hired for a job that I loved- that started the beginning of a potentially wonderful career. For a year I had no infections, no rejections- I was asked to be in commercials and on billboards for my hospital. I was a poster child for everything that could go right for lung transplant. Then, almost all at once I suffered from acute rejection, mold infection, and acid reflux (which can be very dangerous for post transplant patients because it can permanently damage the lungs) and my lung function started dropping. After treating the mold infections, the acute rejections, and having surgery for the acid reflux- my lung function still kept dropping. The doctors have diagnosed my condition as stage three chronic rejection, which is the last and final stage of rejection. I am currently undergoing Photophoresis treatment (which is similar to dialysis) to try to stunt and slow the process of rejection. However, my lung function has dropped from 80% (most people have 80-100%) to 19% and the Photophoresis doesn't seem to be working, and there is no cure for chronic rejection. My only hope for life at this point is another double lung transplant.
My health effects every facet of my life; financially, emotionally, mentally and obviously physically. Luckily, I am followed by arguably the best hospital in the US- New York Presbyterian- and I truly believe they will find new lungs for me and save my life once again. However, all the treatments I receive, appointments I must attend, and medicines I must take plus the cost of living is extremely expensive. My physical condition leaves me constantly in pain, usually breathless, and very often nauseous. Thus, due to my unfortunate physical state plus all the medical obligations, I just do not have the time nor energy to work- which just makes my financial stress exasperated. I have used almost all of my savings trying to keep living up to this point, and my mother is still in debt from the cost of my first transplant. We haven't asked for financially help before but this time we have no other option. Please help make it possible for me to keep going to my appointments and my treatments so I can keep fighting until I can receive my next life saving set of lungs. I want to be able to fight through this and recover so I can keep advocating for organ donation awareness and lung disease awareness.
Even if you can't afford to donate, please take the time to become an organ donor. Heaven knows we need the help here.
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