Skip to main content

Janet has a new lung!

Janet came out of surgery at 2:45 am last night. The transplant so far seems to be a success. Janet’s husband called me this morning to say that the lung seemed to be working well, that her oxygen levels were great and that they were planning on removing the breathing tube this morning.

This is a great day!

It’s Janet’s new lung birthday!

I don’t know why her transplant team decided to do a single lung transplant and not a double. Right now isn’t the time to ask such questions. The first priority is to get Janet up and around and start to wean her from oxygen. Later we’ll find out all of those details.

Janet has a long road ahead of her. Often people think that getting a transplant is like replacing an auto part. You just take out the organ that doesn’t work and slip one in that does. It doesn’t quite work that way. While we’re all hoping that this transplant will give Janet many, many more years, she has essentially traded one disease for another. She’ll have to fight off organ rejection, infections etc. She’ll need medications the rest of her life to keep her body from rejecting her new lung. But given how difficult it had become for Janet to breathe, I think she was happy to make the trade.

Janet’s a real go getter and not being able to do anything as simple as walking across a room or talking on the phone without getting out of breath was so frustrating for her. Now she’s got a chance at a more normal life again.

Please keep up the support for Janet!

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