I'm Britni and I'm one of Derek's three sisters.
A little back story- November 2, 2007. When Derek was 12, he collapsed in gym class. He cardiac arrested three times, once in school, once again in our local hospital and again on his way to Strong Memorial in the helicopter. He spent three weeks and three days in the hospital. The first two weeks he spent sedated. We were told he would never be able to live a normal life again. That he would be a vegetable the rest of his life. Then we met his specialist, Dr. White. He told us that Derek had Idiopathic Primary Pulmonary Arterial Hypertension (commonly known as PAH). Idiopathic means that we don't know what caused it. It wasn't genetic. PPAH means high blood pressure in the lungs. He was put on a pump that was attached to either the right or left of his belly button (he had to change the infusion site every so often) that gave him a continuous dose of Remodulin, his PAH medication.
Fast forward to November 2013. He was approved for a study drug, which was his PAH medication in pill form. This was something we had waited 6 years for, so this was a very exciting time. He spent a week at Strong and finally was able to live a completely normal life. On the pump, he couldn't swim unless we removed the site. In that case, he had 4 hours before he had to put a new site in and Derek was in severe pain for 8 days every time he had to put in a new site. So on this pill, he was able to swim and enjoy life as anyone else.
That changed in October 2014 when he broke his foot. They had to lower his dose of the pill and then they were never able to raise it back up to where it was supposed to be. He would always get sick after they tried upping his dose.
In April 2015, he had to be admitted to Strong unexpectedly after a routine checkup. His medication wasn't working properly and we came so close to losing him again. Dr. White believed that if he hadn't been admitted, he probably would not have woken up the next morning. This is when they took him off the study drug and put in a central line that goes through his chest and into his heart that provides his medication through a different pump 24/7.
Here we are now, July 2016. Derek just got out of the hospital after spending 12 days there unexpectedly in June. He had been retaining a lot of water and that meant his medication wasn't working as it should. On top of his PAH, he also has right heart failure, so that was another thing they were keeping an eye on.
When he first got sick, just over 8 and a half years ago, we were told that he would need a lung transplant when he got into his 50s. He needs a double lung transplant now. He was at UPMC in Pittsburgh (where the transplant will take place) for evaluation to get put on the list June 26-30. They wanted to do the lung transplant then if it was possible.
Derek could be in Pittsburgh for up to six months when he gets the transplant. With this money, it will cover housing while he is there as he cannot be more than a couple hours away from the hospital during the first few months. It will cover transportation and food. It will also cover the donation to Mercy Flight for when Derek needs to be there for the surgery. With a lung transplant, they don't know if they can use the lungs until after Derek is already on his way to Pittsburgh, so he may have to make a few trips down there before they actually have a set of lungs he can use. It will also cover his follow up appointments.
As with all transplants, you could get the call at any time. It could be tomorrow, next week, next month, you never know. Because of this uncertainty, we would need the funds as soon as possible.
Your donation means the world to us and most importantly, to Derek. To know that he has all these people helping him to get through this extremely tough time helps us all see the light at the end of this long tunnel and for that, we will be forever grateful.
Any extra money will be donated to an organization of Derek's choice. Whether be to Mercy Flight, the hospital, or a PH organization.
Thank you, so much.