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hospital stay

April 14th, 2017 — 8:59am

Last week I had a couple of episodes of seriously racing heart (145-ish) with very low o2 (80%-ish). My pulmonologist wanted me to go to the ER, so when it happened a third time, I did. That was the afternoon of Thursday the 6th. Henry drove me to Washington Hospital in Fremont, and they admitted me right away, as they always do when you show up with heart problems!

They diagnosed me with atrial fibrillation. Yay, a brand-new condition! They got my heart stabilized fairly quickly with IV amiodarone, and took chest x-rays and an echo. I had fluid built up around my lungs because my heart was inefficient, so they put gave me a diuretic, which is NOT FUN when you’re hooked up to a bunch of machines! I started out in the ICU ward, but because I was a “walky-talky” patient (mobile and alert) they moved me to a private ICU room with a bathroom, thank goodness. They kept me in the ICU because of all my other underlying conditions. For example, I needed to stay on 6 liters of oxygen even after my heart had calmed down, because of my PAH, and my BP is permanently low. The ICU nurses were great! Najib, Shaina, Karla, Joseph, and Heather. They trusted me to detach from and reattach to the monitors and machines when I needed the bathroom.

After a day on IV amiodarone, they put me on tablets and observed me for another day. At this point (Saturday) they were ready to move me to a regular room, when suddenly I had another bout of AFib. Horrible, horrible. So, back on the IV drugs (they work faster) for 24 hours, then stronger tablets for 24 hours, then observation in a regular “telemetry” room for 24 hours, with orders to walk around and see if that would trigger more AFib. In a telemetry room, you are hooked up to a small portable monitor, which beams your stats to the nurses’ station. Nice! My telemetry room nurses were Trang, Kim, and Priscilla.

They sent me home on Tuesday night. *whew*

All the doctors were great, but especially Dr. Ahmad, the intensivist. He was kind and soft-spoken and he REALLY listened to me. He kept in touch with my pulmonogist at UCSF to make sure I was getting the right care, AND he already had some experience with PAH so my meds and symptoms weren’t a mystery to him.

The worst part of the whole thing, besides the usual hospital sleep-deprivation, was that my Uptravi reactions were so terrible while I was there. Hours and hours of painful hot-face and full-body aches and crushing fatigue almost every day. I don’t know if it was worse because of the stress of being in the hospital, an interaction with one of the other meds they gave me, or if they accidentally missed giving me one dose of Uptravi (I suspect this is the case, since the reactions continue to be terrible even though I’m at home). Awful, awful, awful.

The food was pretty great. Most days I had three quite edible meals, and along with most lunches and dinners they gave me two salads and fresh pineapple at my request! I gained 8-10 pounds while I was there so I’m up to 129 and no longer severely underweight, just a little underweight.

Now I have followups with my pulmonologist, a cardiologist, and endocinologist (my thyroid levels were a bit high, which could have contributed to the whole thing). Eventually, when I’m stable, we can go back to the Remodulin plan, which has of course been postponed. Grr. But at least the nurse came and trained me and Henry on how to start an infusion site, and how to fill, attach, and program the medication pump.

Thanks, Washington Hospital in Fremont, and thanks to your great staff! Also thanks to the ACA which allowed me to buy an insurance plan which will cover all but about $500 of this whole adventure (when I went in, I was already at $3500 of my $4000 out-of-pocket max for the year, and I have no deductible.)

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The Shoe That Grows

April 5th, 2017 — 12:21pm

For several years I’ve been donating to a charity that I feel very strongly about: The Shoe that Grows. They have created a wonderful, sturdy shoe that can grow five sizes, and they give these shoes to kids in poverty. You can read about The Shoe That Grows here:

This week, the first week of April, is “Wear A Pair” week! They let us “Wear a Pair” for a week to raise awareness and get more donations. Here are my feet (with hand-knitted socks) in an Adult size pair.


Here’s a photo of Henry’s foot on the left and mine on the right:


If you’d like to donate this week, please visit my fundraising page:
$1, $5, $10 — whatever you can afford — will help a child in need to be healthier and happier!! Thank you so much :)

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