Chronic Chicks

What do you get when you have 3 women, 1 double lung transplant, 1 cancer warrior, 2 CFers, 1 epileptic, 3 ports, 2 lawyers, and 1 cosmetologist wanna be? You get me Piper and Lisa hanging out together!

My cyster Piper, who is from NYC, was out here for a wedding and she was kind enough to make time to get together with me and our friend Lisa. I have blogged about both of them before. Piper had her transplant a little over a year ago, Lisa is the wife of a CFer who passed last year and now she is fighting breast cancer (and looking wonderful while doing it!).

So we all got together lunch. We updated each other on our current medical statuses (stati?), compared ports, told hospital horror stories, told good hospital stories. Of course we also talked about stuff not related to our medical issues, pets, family, significant others, and plans.

Lisa had to go to an appointment in the afternoon which left Piper and I to do whatever. We drove through Seattle a little bit and headed down to Pike's Place Market.

You can't come to Seattle and not go to the market, its a law. We didn't explore the inside of the market because its always crowded and Piper is, of course, immuno suppressed. We did see the very first Starbucks though. I don't know why that's such a big deal but everyone has to see it. There's always a line out to the street. A little further down we came accross an ice cream shop and Piper treated me to a sundae.

As we were walking back up the hill to the car Piper commented that I seemed like I was handling it well, not coughing much. Which was true, I feel good since starting my MAC treatment, but I couldn't help envy Piper because when she got to the top of the hill she could complete a full sentence without taking a breath, or three. When I see my friend who are post tx and doing well it just confirms for me that when my turn comes up I want it. Sure, there are no guarentees but I at least want the chance to feel good. I never feel really good these days. There is pain, shortness of breath, stomach aches, naseau, piles of pills that don't seem to do much of anything, treatments that are unpleasant at the least and very painful at the worst. Its getting harder and harder to maintain my baseline. I know its only a matter of time before I start to decline and things will get even more complicated. So seeing Piper inspired me. I'm going to keep doing what I have to in order to keep these tired lungs as long as I can, but some day I hope to have fresh ones.

Anyway, where was I? I had to stop by my hospital to get my weekly amikacin so Piper said she would take me there. So she even got a glimpse of my hospital while she was in town! While we sat waiting for my number to be called I pointed out staff that I recognize and Piper noticed a CFer. I got to thinking about it later and I realized that I have been admitted at the same time as that CF patient. I don't know who she is though, she didn't seem like she wanted to talk when were on the floor together.

After the pharmacy it was time for me to head home. Piper dropped me off at the bus stop and I got a picture of us before we parted ways. I am SO glad I got to meet her in person finally. She has been a big source of inspiration, friendship, understanding, and support me. For all of that I thank her very much and I hope that she has benefitted from our friendship half as much as I have.

Rough week.

What a week this has been. Monday was pretty uneventful. On Tuesday evening I had a fundraiser at a local burger joint. We raised $250 for the CF Foundation.

On Wednesday I had an appointment with my diabetes nurse practitioner. I've been struggling with my blood sugar. Abx make me run low, and finally my NP acknowledged this. She started me on a long acting insulin which should reduce my need for the short acting insulin that is making my sugar bottom out. This means I should be able to eat like I'm supposed to between breakfast and dinner and not have to stress about my blood sugar so much. After that I went to have some blood work done and pick up meds.

The lab screwed up some of the blood work. They sent it to be spun when it wasn't supposed to be. So while I was waiting at the pharmacy I was paged back to the lab. The redrew the screwed up tubes. So now I have matching hemotomas on my arms.

Then yesterday....fucking yesterday. I was scheduled to have my port flushed but Missy kitty wasn't doing well. She has been sick for a while but yesterday she got worse. We knew that she didn't have much time left so we decided to get her put to sleep. I called my nurse and left a message telling her I would have to reschedule then we went to the vet.

Missy kitty was pretty old, probably in her teens. We didn't want to watch her get worse or have her suffer. I really feel like we did the right thing for her, but just having to make that choice is hard not to mention losing your friend. J and I both got to say our goodbyes to her. When I held her for the last time she purred. She hadn't purred much in the previous few days. J and my mom both said that she was telling me she loved me. We were not with her when they did it. I was there when my dog died and I was hysterical afterward, I didn't want to watch my sweet kitty go.

A little while after we got home the doorbell rang. My nurse didn't get my message. Since she was here I just let her go ahead and access me. Only my port wouldn't return blood. She thought she was missing it. So today another nurse came out to try. She got it in one shot but then there was no blood return. That means yesterday the nurse was probably in too. So now I am accessed while I wait to hear what the all knowing IV people want to do. Probably TPA, an enzyme that dissolves clots.

This week can go fuck itself.