Skip to main content

The note from Jose in Spanish

Tengo buenas noticias que compartir a pesar de los inconvenientes experimentados en los vuelos de/para San Juan-Puerto Rico.United Airlines ha restablecido sus vuelos sin escala que han estado utilizando nuestros pacientes. Así que por el momento ya no van haber los problemas que estuvieron experimentando nuestros pacientes en el mes de octubre debido a retrasos por escalas en Miami. (Esto fue debido a que tuvimos que cambiar nuestros pacientes a American Airlines debido a los inconvenientes que estaba confrontando United Airlines)De otra parte esto también aliviara cualquier problema de oxigeno ya previsto, de los cuales iban a presentarse bastantes, aunque solo se viera envuelto un paciente!!!! Debido a que cualquier paciente que sufra el retraso de su vuelo (en cualquier aeropuerto), limitara su accesibilidad a un suministrador de oxigeno y la renta de un equipo como este se encuentra cerca de los $300.00 por hora. Lo que ascendería a $600.00 ida y vuelta por un retraso de vuelo en Miami. Sin mencionar todo el papeleo y el tiempo invertido en el tramite en cada visita que realice el paciente. Nuestra esperanza es que United Airlines continúe ofreciendo vuelos directos sin escala durante todo el año el 2009; aunque nuestro agente experto de viajes (Earlene Little) me explico que las agencias de viajes pueden cambiar sus vuelos en la forma que lo deseen.

José Salas
Coordinador de Cuidado de Pacientes
Instituto Nacional de Investigación del Genoma Humano
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

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h
Post a Comment
Read more