Skip to main content

HPS Network attends the American Thoracic Society meeting

Recently the Hermansky-Pudlak Sydrome Network attended the international meeting of the American Thoracic Society. It is one of the biggest medical events we attend all year. There were approximately 14,000 lung doctors and researchers gathered together in one place. If you want to read more about the meeting, I suggest visiting www.hpsnetwork.org. We will be posting the news stories there.

But here is the place for me to share a few personal reflections.

Even though the vast majority of the attendees are not working on Hermansky-Pudlak Syndrome, it was still very comforting to me to see so much research being done on lungs. There’s a saying, the rising tide raises all boats. Better understanding of the lungs, and lots of different lung diseases, could someday yield a clue, or a technique, that might benefit patients with HPS. For example, I know that some of the Cystic Fibrosis researchers are working on a way to deliver gene therapy to the lungs. While our therapy might be different, our doctors might be able to use the same delivery system.

We were very excited to have several doctors from Puerto Rico drop by the booth. We hope to stay in touch with them.
 
And, of course, we were thrilled to see our own researchers and doctors come by. This year I wasn’t able to make it to the poster sessions. I know there were some on HPS. I’m sad I didn’t get to see them or take pictures.. But, one can’t be everywhere.

We also tried something new this year. We held an HPS Doctor’s Dinner. It was a great investment. It fosters friendship and collaboration among those doctors and researchers interested in HPS. I think it is something, funding allowing, we will continue to do.

Perhaps best of all we had a record crowd. The Nieves and Rodriguez families (minus the kids) both came to the Breathing Better event and helped us set up the booth in the exhibit hall. The Nieves came back the next day to help us at the booth. The rest of the HPS team were Angie, Carmen and me in one hotel room, and Ashley and Donna in the other room.


Comments

Popular posts from this blog

Nobody likes rejection

Me posing for a photo with Finley. This is my swollen steroid face. Thankfully, it is starting to go down.


Rejection – it’s a word I’m hard pressed to find a good context for – and in transplant land, it certainly isn’t a good thing, but perhaps it’s a constant companion. Once you get an organ that you weren’t born with, your body is intent on seeing this life-saving gift as a foreign invader it must destroy. It’s a battle that is constantly going on inside you, and it’s a battle you and your doctors constantly fight. The only good news is medicine has created a number of weapons to hold rejection at bay.



In June I had my first setback because of acute cellular rejection. They tell me it’s the good kind of rejection to have because it is treatable with an onslaught of steroids and medication adjustments. Oh goodie!



It was amazing how quickly it came on, and really brought home how important it is to do those vitals and spirometry every day. When I thought I might be in trouble, I had m…

Planning for Armageddon

Sometime in January I had a transplant clinic appointment. I can’t exactly remember the date now, but I remember the appointment very well. It was the beginning of what could have been the end.



I did the usual tests – spirometry, a six-minute walk etc. I was now not just on eight to 10 liters of oxygen. I needed 10 liters of oxygen pretty much all the time; even to walk the maybe 15 to 20 feet to my bathroom. To go for a slow walk required 15 liters.



The funny thing about increasing oxygen, especially when it happens over years as it did for me, is that you adjust to it. It just becomes your normal. You might get annoyed by it, but somehow it becomes this thing in your life that just is there. So, although I was clearly very sick at this stage, I didn’t feel sick. I felt tired a lot, but not sick. I didn’t feel pain (thankfully). I didn’t feel weak (even though I needed a lot of help with household activities so clearly I was). I just adjusted. I coped with the waiting for a new lung …

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.