October 18, 2002 Sean found out that he had PH, at the time life expectancy was 2.7 years with out medication. Fortunately, he responded well to medication and he was worked up for transplant in 2002, Then he was deemed too healthy for a transplant in 2006. In 2012, his health started to deteriorate again and was worked up for a second time in the midst of medical school, something he was told, in 2002, he would never be able to accomplish. Again, after medication changes he was deemed too healthy and not put on the transplant list that time. In summer of 2012, Sean received the Outstanding Young PH Citizen Award from the Pulmonary Hypertension Association.
Unfortunately, in January in 2018, in the middle of his intern year- following receiving his DO, Sean was forced to take a leave due to deterioration in his health once again. This time, however, he is already on maximal therapy and there are no clinical trials or other places to go but transplant. Typical costs of double lung transplant without insurance is roughly $700,000. Fortunately, Sean still has insurance through his residency program, so the most expensive part is copays for antirejection medications and a place to stay in Cleveland for 2-3 months following transplant to ensure rejection doesn't take place.
A little from Sean himself (stolen from a facebook status update!)
Thursday 8 March 2018
“So, I got back from my two day gauntlet at Cleveland Clinic as I venture the transplant route for the third time in my PH journey.
What can I say, it was two days of testing and doctors appointments. I was exhausted at the end of the first day and came home pretty exhausted today, but a lot weighs on my mind and I know many of you want to know what's going on.
The end of December and beginning of January, as you all know, was pretty bad. It ultimately lead to me taking a leave of absence from my residency. To be honest it was the hardest thing I have had to do. I have fought off depression during this time and now I am dealing with the grim reality that transplant has become the only option.
Back to the appointments. All morning and early afternoon Wednesday was tests on tests. I had 23 vials of blood drawn, did some breathing tests, 6 minute walk test, pulmonary function test and some other testing. Early in the afternoon I had an echo and EKG. The director of the program wanted to meet me a day earlier.
6 minute walk test went well, walked a decent distance, I don't remember the distance but it was well over 300m. Echo, my heart looks like poo, chest x-ray looks like garbage, hearts about 4 times normal which is double what it was probably 2 years ago.
So, I met with the director of the program. We chatted for a while and then grim reality hits... "On paper, by numbers, you're too healthy for transplant. Or, at least, that was my first inclination. Seeing you however, and doing a physical exam you're a lot sicker than the numbers say, and you really need a lung transplant."
You really need a lung transplant, ya so that's been ringing in my head all day. Thursday (today as far as I am concerned since I am still awake) I met with social work, financial planning and then the Cleveland Clinic PH team. The PH team was brought on in case there is some possible clinical trial or recommendation of optimization of therapy. Doctor comes in after reviewing my volumes of medical records... "You're on maximal therapy and failing, we have no clinical trials that will help you, I would advocate only for lung transplant."
In a nutshell, transplant it is. I will head back to Cleveland in a few weeks to wrap up pre-transplant work up. After that it sounds like I'll be presented to the committee and then if approved sent to the Consortium for final decision before listing.
I don't like admitting I am scared, but I kind of am. I really don't know how this will ultimately affect my career. I know it will be nice to be able to breathe again, to swim again, to have a life... again, but at what cost? Trading one disease for a life time of immunosuppression is a scary idea. #TransplantIsNotACure it is a swapping of chronic medical conditions which is a scary premise. However, I am a survivor and if it's what I must do to survive, then so be it. So, I will walk bravely with my head held high, my family on one side, my friends on the other, the earth to hold me up and the sky to bring me new breath.”
Let’s help this guy who has a big heart (literally and figuratively!) and help him afford to be able to survive!
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