Celebrating a transplant!

Photo by Tommy Tillman - Nancy (in the red) and her daughter Jessica.

Our facebook and twitter followers, as well as our Yahoo! group members, are already in the loop about this, but I have to brag!

Nancy Lee, a long-time member of the HPS Network Board of Directors and a long-time member of NOAH, got her lung transplant this past Friday evening. It’s the eighth HPS lung transplant that I’m aware of, although they are getting to be so common now, perhaps there have been more!
Nancy and I were both in the HPS Pirfenidone study for the pulmonary fibrosis of HPS at NIH. I’ve known her for years. She’s always been an inspiration to many HPS’ers because she’s always been so healthy.
Even as her lungs began to fail, Nancy remained a go-getter! She’s continuing the trend making it off the vent and out of ICU in record time!

She’s having a bit of trouble with the swallowing test today, but I’m sure that will be quickly overcome. Nancy still has a VERY LONG road to go. Getting new lungs isn’t exactly like replacing worn out parts in your car! Still, we can’t help but celebrate this gift of life!

Go Nancy!!!!!

Comments

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect

Living on the frontlines

Search This Blog