Skip to main content

The waiting game

Today's tests were pretty easy. I did pulmonary function tests this morning, blood work and am sitting here waiting for more blood draws and trying to not only cough, but cough up some nice flem samples. The docs don't seem too concerned about the cough. They think it just took me a while to get over the strep and that I probably picked up a virus on top of it along the way. But, they want to culture some flem just to be sure I haven't picked up something bacteria.

This morning I was quite please to see the technician actually print out a copy of my results and put it in my chart. The last time I was here they just sent them through the computer system and I couldn't look at them until Dr. Gahl was ready to talk to me.

So, I didn't say a word, but as soon as I got out of the lab, down the hall and into the antrium area, I sat down and pulled them out to see. I 'm not celebrating until my wrap up because I'm not a doctor and there may be something there that I wouldn't pick up on - but I do know which numbers we've been watching and where they were last time - and my preliminary own assessment is that things look pretty good!

I've also broken my chain of "interesting" roommates. (No Karen, you don't count!) Every time I've come to NIH without a friend being here at the same time, I've had some, well, roommate experiences. This time I was supposed to get a roommate today, but the woman apparently canceled her trip. So, I've got my own room. It's been nice. Grin!

Having that sneak peek at my results has me feeling much less anxious than normal.

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.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria