Annette's Exciting Blog: Another Phriend becomes an Angel...

Faithful readers of this blog have prayed several times for a young phriend named Mason. He had a transplant a couple of years ago, had about one good year before he started having trouble again. He had recently been given the "green light" to be listed for another transplant. I don't have any details, except to say that he lost his battle Sunday night.

He had written a little bio for the booklet we gave to attendees at our fundraiser last November. Here is what he wrote:

My journey began late in 2005. I was 17, working and going to school full time. I started to notice shortness of breath in the mornings. I thought I was just getting out of shape and didn’t worry too much about it. After a few weeks one morning I was pushing out quads, (I worked at a off-road shop) and became very short of breath and passed out. I was rushed to the ER. They told me I had pneumonia and sent me home on antibiotics. I took about a week off work and rested but I didn’t really feel any better. I went to a few different doctors, but they didn’t know what to do or what I had. One thought it was asthma and the others weren’t sure. One doctor scheduled an echo and x-ray. But I couldn’t wait any longer. So I went to a hospital in CA. It took about a week of tests and evaluations to get a diagnosis of PPH. I was sent to a PH specialist in Los Angeles for a right heart cath. The doctors discovered that my PH was severe and that I needed start on Flolan immediately. I was told that it usually works well and quickly. I didn’t mind mixing or any of the stuff that goes with Flolan. The problem was I had PVOD (pulmonary veno occulsive disease).
PVOD is hard to treat. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The Flolan lowered my PAP but made my PVOD worse. By February I was bed-bound. If I had to walk more than 100 feet I had to use a wheelchair. I was listed for transplant a few months later and waited 11 months for my transplant. After the transplant I had a great recovery and was a full time walker in the first month. I had 5 months of greatness, no problems at all. Then I got hit with rejection, fungal infection, flu and pneumonia. That has slowed me down a bit and there are still some bumps. But I’m still glad I got it. If I get a few more quality years, I’ll be happy.

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I remember when I met Mason in person, after "meeting" him a year or so before on our PHA online discussion site. We were at the PHA conference in Houston this last summer. He gave me a big hug and said that he was so excited to finally meet me. All I could do was look at him and think, "He is so adorable and so strong. I feel like I'm connecting with a friend I've known for 20 years". I don't know if he was this strong, courageous and mature before he got sick, but in his 20 short years he had already become an amazing young man.

I'm asking for prayers for Mason's family and his phamily. Mason was such an incredible young man who we all looked up to and loved very much.

Dear God, we've got to find a cure so we can stop losing such amazing people.