Living on the frontlines

Today we added a new HPSer to the patient registry. This puts us at 90 to go on this year's Hundred People Search (H.P.S.). 

We have added a new HPSer to the patient registry. This puts us at 91 to go on the Hundred People Search (H.P.S.). 

We have added a new HPSer to the registry. This puts us at 92 to go on the Hundred People Search (HPS). 

We have added a new HPSer to the patient registry. This puts us at 93 more to go by next conference for the Hundred People Search. 

Today we added four new HPSes to the patient registry! This puts us at 94 to go by next conference! 

We are starting a new year in the HPS calendar!!!! So, what is the Hundred People Search? It's an HPS Network challenge to find everyone possible with HPS and help to make sure they have an accurate diagnosis if they need it. H.P.S. - Hundred People Search.  Last year the Network changed its focus for the year to concentrate on building a better infrastructure for research. We have been working on opening the Young Lung Centers in hopes that someday, should another drug or treatment trial become available, we can fill it faster and thus get treatments to people with HPS faster.  This year, we are turning our focus back to finding people with HPS. We do not, however, have much budget for this effort. The centers cost money. We are going to need the help of everyone to do outreach and to find others who may need a diagnosis, or who have one, but might not be aware of everything happening in HPS research etc.  So, we are kicking off the year with two new HPSers added t...

The last few months have been hard ones for sure! I was going to post a health update about the first six weeks of the year. It was one health issue after another. Now all that history seems minor and hardly worth a mention in comparison to what happened next. Feb. 15th I had a major bump along the road to transplant. As part of my transplant workup, I had an endoscopy. Because of my GI history, I do not have a colon for a colonoscopy, so this was the way they could check for any active GI disease. I also have a history of reflux, so they wanted to be sure my reflux was not so severe that it would damage the new lungs. The good news is that the endoscopy was clear. No GI disease. No reflux issues that will get in the way of transplant. And, my thrush had cleared up (one of the problems earlier in the month.) The bad news was the endoscopy landed me in the hospital for five days. Now, I’m still recovering. I should have more strongly insisted on having this procedure at the hospital....