Skip to main content

From Janet's husband

Today I thought I'd just re-post the e-mail Janet's husband sent to the HPS adults listserv today. Janet gets better every day!

From Anthony:
Hi everyone, Janet has had her final chest tube removed this morning. We are getting closer to her release date and we are kind of nervous about being on our own. There is a lot for us to remember in terms of medication regimen and the changes in our lifestyle. Also, very soon Janet will be breathing all on her own for the first time since July. Our transplant coordinator (and my new best friend) was right when he said that Janet would be nervous about giving up the oxygen. I had a similar predicament myself a few years back when my lung collapsed, but nothing like what Janet has had to go through, so I can sort of relate to her apprehension. Only someone who has pulmonary fibrosis can understand what having a total lack of oxygen does to a person. I can't wait to tell everyone when she is finally breathing on her own. She is re-learning how to breathe properly so she can expand her new lung. She is working really hard though and she can't stop smiling. I have my wife back and we will be back in Chicago soon. There wil DEFINITELY be a party. Details to come.

Anthony K. Creer

P.S. My wife and I would also like to thank the person who gave my wife this wonderful gift. May God shower his or her family with all of the blessings they deserve. We do not know the circumstances of the indiviual and how our paths crossed, but if the family allows us we would like to thank them personally.

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