Skip to main content

Mom update

It's early, early in the morning and I just talked to mom. She sounded GREAT!!!!! Ryan had talked to her yesterday before I had, and reported the same thing. Mom says the eye looks much better now that it's stitched up. It's not bleeding and draining anymore, although it's still swollen. Her vision is improving and is expected to keep getting better as the swelling goes down. There is a chance that they'll have to go back after everything is healed for a little more plastic surgery, but otherwise, everything is going very well. Thank you so much for all your prayers. I'm so grateful to her team of doctors. If they hadn't caught that blood clot, I wonder what would have happened to her vision, or if the clot had gotten loose so close to her brain - it makes me shutter!

Mom says she's been very happy with the care she's had in this hospital. She says they've watched her so carefully and called in any specialist she needed without hesitation. She says even the food has been pretty good. Grin!

I spoke with mom's nurse, who spoke flawless English. Mom says communicating with the medical staff has been no problem. Her doctor actually went to medical school in Seattle and is married to an American woman, so his English is perfect.

I can empathise with our HPS friends that don't speak English and what that's like in a medical setting. There were a few times over the years living in Germany when we had to seek medical care in the German hospital. Usually someone spoke good English, but still, it can be unnerving not to understand what's going on around you when you're ill.

As for me, my sleep patterns are now completely backwards. I've been staying up so I can talk to mom in the morning her time, but late enough in the morning the doctor has been by. I think mom's in the clear enough that I can start working on trying to get things switched back around.

Thanks again to everyone for their prayers and well wishes!
Labels:

Comments

Post a Comment

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
1 comment
Read more

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.
Post a Comment
Read more

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
Post a Comment
Read more