Skip to main content

Health Update:

It has been a rough few weeks here, but could be much worse. I’ve had a cold for a week and a half. Thankfully, (knocking on wood) it hasn’t impacted the amount of oxygen I need, and so far, hasn’t become a respiratory infection. Yet, just having a cold these days makes me so anxious! I don’t have any reserve at this point. One bad infection, and I’m going to be in the hospital until I get lungs, or I don’t. I just don’t have too far to go before I won’t be able to get enough oxygen at home.

So, you might say, I’m paranoid. I’m paranoid about germs and when I get sick, it’s so much more than just having a little cold. Thankfully, only one day of a fever etc. The trouble is I get better and I think I’m recovered, and then it seems to come back.

The medicine the transplant center gave me to help with the cough is helping. I still cough a lot though. I’m so tired all the time because I rarely sleep well. But, with the medicine, my coughing fits aren’t quite as long. I haven’t coughed so hard I’ve thrown up since starting them, so that’s something. I did cough so hard yesterday I pulled a muscle in my neck…whine, whine, whine…..

I get very frustrated because I get tired so easy. I have so much to do, but I can never keep up with it all. I have so many friends I want to stay in better touch with, but by the time I do what I have to do medically every day, and work a few hours, I’m so tired it is hard to call people and just chit chat. It makes me cough more, and it is hard to be very conversational when you are so tired.



I hope everyone can forgive me for not being in touch better.

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