Wednesday, August 3, 2011

August Update

I think my last entry was a little hurried. I was trying to cram a lot of stuff into it and didn't adequately cover my appointment at the transplant clinic.

I can say that after a year of making the four hour drive (one way), my mother and I have decided to drive to Stanford the night before and stay at a hotel. That way I'm more rested for my tests.

The clinic is going through some changes. Some I don't like. Before, my appointments were in the afternoon. My afternoon PFTs are always the best. I've had time to clear crap out and a chance to eat a couple of times. Now appointments are being scheduled in the early morning. Not so good since I still have crap to clear out of my lungs and I can't eat right before a PFT (all that squeezing the air out can cause vomiting). The other thing I don't understand is that during PFTs I'm doing a long of coughing, but they don't ask for a sputum sample until I get to an examination room. By then I have nothing left to get out. This last time I had to jump up and down and then have my mom beat my side, just so I could bring up a sample.

The part that annoys me the most about the changes is that they are combining the Stanford Adult CF Center with the Transplant Center. I don't see eye to eye with the CF doctors there. And they have different ideas about my care. I constantly have to tell them that I will bring their ideas to my CF team at home. I see no point in switching care teams, when the one I have works so well for me. You don't find a doctor you like that often and I've had one for the last 10 years. Not switching teams if I don't have to.

One of the more positive changes is that the lab for all the blood drawls is right next to the new clinic location. Before I had to hop in the elevator, go down a floor and then walk all the way to the other side of the hospital. For someone with limited lung capacity, that was a long and breathless walk. Wish they had food next to the lab though. I always have a ton of blood taken out that I feel funny.

What I don't like about the lab is that all the spots for drawling blood are right next to each other with no dividers. I have trouble with having my blood drawn and have trouble with the site of blood. I had to keep my eyes shut the whole time, because they had a guy in the chair next too me having a massive amount of blood taken out as well. Sometimes people just don't think everything through.

The appointment ended with the doctor saying I still wasn't sick enough to be listed. I am starting to wonder what they consider sick enough. I can't work, I can't swim (which I loved), I can't hike, I can't run, I can't ride my bike, I can't chase my niece around. I can sit at home and watch TV all day. It's just exhausting dealing with these people.

Maybe some miracle will happen and my lungs will find a way to heal on their own. I tend to baffle doctors so maybe I'll do it again.

Mid-July brought my 30th birthday. Every CFer knows that is a huge milestone. My family threw an Over the Hill party for me. There was tons of food. And I had a blast. That night we camped out in my grandfather's tipi (my niece calls it a TV). Turning 30 was great. I guess it helps to be 30 and look like you're barely 20.

I think the issue with the Christian group has been resolved. We shall see. The people involved gave an apology and just said that they were trying to protect me. I let them know that I didn't make it to 30 by taking unnecessary risks. Also, if they wanted people to fly they need to let them fall on their butts a few times.

In a week I'll be camping on the California coast. Nothing better than salty air and hearing the ocean as you fall asleep. This should be fun.