A Breath for Derek
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.
Thank you all for your continued support and prayers!! Please keep the thoughts and prayers coming as he continues on the road to recovery!
Derek is standing!!! Woohoo!!
They took him off the ventilator yesterday and put a trach in. He was having some difficulties with the vent-his throat was raw and he was uncomfortable. He wanted the trach and wanted it right away. So they got him in for that yesterday and he looks much, MUCH more comfortable!
They also had him breathing ON HIS OWN for 45 minutes this morning!
He's a rockstar and I couldn't be more proud of him!! Keep up the awesome work Derek! I love you so much!!❤️❤️
DEREK IS DONE!!
He should be back in his room around 4 or 4:30. Doctors said Derek did great and he's still doing good. He will just have to go back either tomorrow or the next day for a washout.
The amount of support Derek has is amazing. You all are amazing. We can't thank you enough for your continued love and support. I truly believe the prayers and positive thoughts contributed to a successful surgery! Thank you all!!
Ill share to help as much as possible. Unfortunatly ill be heading to UMPC in Pittsburg myself for my mother as she'll need a double lung transplant as well and she needs to be evaulated for a week in August. So best of luck to you! Praying for you and your family!! And i will share the gofundme account.
Continued healthy positive thoughts for everyone great news
Continued healthy positive thoughts for you all.
Hey Derek! Our prayers for your transplant and complete healing will not stop until we get the good news! We pray that the pain is minimal and your wait for healing is short. You are loved, young man! Our loving Heavenly Father has good plans for you. ♥
Praying for this young man and his family
I know Derek from school and want to help, so I will be holding a fundraiser this month with Tastefully Simple and will donate my commission. Praying for him!
Continued healthy positive thoughts or eveyone
Thank you James Helms!! It means a lot!
Look into wings and the family house they may be able to help with the cost of staying there
Britni- Wings of Flight out of Buffalo donates their pilates and planes for medical emergencies, appointments, etc. There are at least 2 families in Wellsville that utilize this free donated service from the DiMarco family out of Buffalo. I would highly recommend checking this out for your brother. My sister also sees Dr. White for PAH and is in an experimental drug phase test as well. I'm so sorry for what he and your family are going through. Prayers and I'm pulling for him.