Living on the frontlines

I stress a lot about laundry. I stress about it because I share one washer and dryer with nine families in my building. I can’t always do my laundry when it’s convenient for me. I also stress about it because I have this nightmare scenario in my head that something will happen, I’ll get admitted to the hospital again, and I won’t have any clean clothes to have anyone pick up. People I don’t know well enough to be aquainted with my underwear might have to get it from my apartment, wash it, and bring it to me. Over these past few years my brother, for example, has been in my panty drawer way more often than any brother should. And so it was the day before Halloween this year. In Sept I was doing the best I’ve done so far post transplant. I could go into the city, or anywhere, and not worry that I wouldn’t have the stamina to do what I needed to do. I was still getting easily out of breath with stairs and hills, but I was doing great. In Oct. it seemed like there was a slow decline, so sl...

I think this is the number one question I get asked these days. It makes sense now that I’m walking around with the fashion accessory of an oxygen cannula in my nose! (Really got to come up with a way to bling the cannula!) So, here’s how I’m feeling – I’m feeling great! In fact, I feel better than I’ve probably felt in the last year. It seems so ironic that my entire life is in turmoil trying to make plans to move to be near the transplant center when for once I do feel pretty great. I think it is because after two years of coughing (a pretty severe cough the last six months), I am now on round-the-clock Codeine and am NOT COUGHING!!!! They also switched my inhalers from Serevent and Q-var to the max dose of Advair. We had switched them two years ago because these two drugs were supposed to be the same as what is in the Advair diskus but they were much cheaper. Turns out they are not as interchangeable as we had thought. Since I’ve been back on the Advair the asthma-like symptoms are ...

It's been a long time since I've written a health update. Mom is on her way to pick me up and I've got tons to do, so shouldn't be doing this either - but oh well. I haven't posted much about my health lately because there hasn't been much new to say. It isn't that everything is fine, but more that it's the same old stuff.  Friday I had my first appointment with my new local pulmo. doc. It was a great appointment and I like him. I feel like he  "gets it" which, when you have something rare, isn't always a feeling you go away with on the first appointment.  I was very lucky to meet him at the American Thoracic Society meeting. Actually, I'm surprised we didn't scare him away! He came to the booth looking for information about HPS because he knew he had a new patient coming in with it. As I'd just made the appointment, I took a chance and asked him if he was from KUMed. He said he was, and I introduced myself as his new patien...