Skip to main content

Still waiting

I'm still waiting for test results. I probably won't get them until late this afternoon. There have been a few developments, but until the doctors have had a chance to discuss them, and then discuss them with me, it's hard to know whether they're big developments or little ones. I can't imagine that they're that bad as I'm feeling pretty good.

They did see a "mystery" spot on my right lung. I reminded them that last time I was here there was a "mystery spot" and that they stood around and debated about whether it was an infection or fibrosis. Then, when my PFTs were off, they decided it was fibrosis. If it's the same spot, that would probably confirm it's early fibrosis I would guess anyway. So, I'm waiting to find out if this is a change from the last CT scan or not. The good news is Kevin didn't think there was much change - but the pulmonologist hadn't seen it yet.

They've also found blood in my pee, according to the nurse last night, but the fellow was just in and didn't know anything about that. I would think if it was serious I would have noticed it.

The great news is my phlem sample was apparently clear of any nasty bacteria. That's great news!

Today I was trying to access the work server. At first my password wasn't working, but now it lets me in, starts to load the window, and just stalls out. Oh well. I'll try again in a bit. For now I'm off to make my list of questions for Dr. Gahl. Grin!

Comments

Popular posts from this blog

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