I've switched all my care to Stanford in Palo Alto, CA, and let me tell you, so far, I love it! I have only met with two of the doctors (Dr. Sista, and Dr. Dillon), and they are both very informing, nice, and they talk to you like you are a person instead of a paycheck. For me, changing centers was a big thing, I was scared of the unknown I guess you can say... But with their amazing nurse coordinator and the kindness of their staff, the transition was a smooth one.

The thing I can tell from Stanford so far, is that they actually care about what is going on inside of me. Not just the fact that I have Cystic Fibrosis. But they care about the other things too. Like, why do my joints always hurt? My history of Guillian Barre' Syndrome, my sinuses, possible CFRD and my stomach. At the first appointment in July, we talked in depth about each of the subjects. We decided that we should do one month on and one month off Colistin, and get some more appointments set up to kind of get a baseline of where I am at in my CF progression.

I went down for my second CF clinic appointment as well as a few other appointments between the 17th-18th. Since Nick is in town (yay), he was able to attend these appointments with me, and it really means the world to me because he is my husband, and my number one source of support. I know he doesn't understand everything yet, but the only way to learn is to come and attend these things! So anyway, we drove down on the 16th, because our first appointment was at 10am on the 17th, and we live 5 hours north of Palo Alto (if we don't hit traffic), so we wanted to be able to actually get up at a decent time, instead of 3am.

First appointment - Facial scan and CT scan of the lungs. Basically they put you in this tube, make you hold your breath, they take pictures of your lungs, and then you breathe. You don't have to hold your breath for the facial scan, but it's the same concept.

Second appointment - Bone density scan - Similar to the CT scans, you lay on a table, and a flat x-ray type board scans your hips and legs.

Third appointment - CF CLINIC! During CF clinic I met with Dr. Sista (my first appt I had met with Dillon), and we talked about some of the results of my tests. Well, firstly my bone density was low, and I was told that I have osteoporosis and the best thing I can do for that is just take calcium supplements on top of my diet now. But this is a cause for my joints and bones to ache sometimes. Secondly, we talked about my weight. I was down 2 pounds, so I was given Scandi shakes. I know, I know! You guys are probably thinking - Ew thats freaking sick! LOL! But I haven't had them since i was about 10-12 years old, so I wanted to re-try them. I asked for them :) So I am hoping that they will help boost my weight a bit. They also had one of the transplant doctors come in and talk to me, because they knew that I had been referred for evaluation, and I kept wondering what the hold up was... Well, I got some bad news. Good news too though, but bad news. The BAD news is, is that I can't get transplant at Stanford, because I have an abscessus in my lungs (my exact one is mycobacterium abscessus), and they do not do transplant on patients that have this. The reason WHY is because the specific medicines Stanford give after transplant, do not have a very good outcome with patients that have had a history of abscessus in their previous lungs. But they did say that their are other hospitals that DO transplants on people with that certain infection and even cepacia. Since I am moving to NY, she said that Pittsburgh has a great transplant center that does transplants on people with mycobacterium abscessus. So this is good. But the good news is, is that I am not sick enough! For a while there, I was... but I am slowly and steadily making my way back up, so until then, I shouldn't worry too much about transplant, but they are glad that I am so educated and informed on the subject.

Fourth appointment - PFT's. Now this wasn't just the regular PFT's you take in CF clinic, it was the actual glass box machine that you climb into and money starts flying around and... oh wait - wrong glass box! We can dream? Haha just kidding, but it was the glass box PFT machine thinger. My PFT's were 38% which is 1% higher than they were last time. Considering it's only been a month, and I haven't been on any extra medicines like Colistin ( I was actually supposed to be on that, but the pharmacy never wound up sending it, so now I am waiting to do it still ), or I wasn't on any IV's. Just doing solid 3 vest treatments 20 minutes every time. Keeping up on excersize, not letting myself sit around the house too much, and being positive! So yes, 1% is awesome! OH I forgot to mention that they are starting me on Cayston as well, so I am STOKED to see how much this will help :)

SECOND DAY

First appointment - Glucose testing. Basically I sit there for 3-4 hours, and they draw a ton of blood from me. I get some blood drawn, and then I have to drink this FOUL tasting orange drink (which I wasn't able to finish, because it was so freaking nasty), and then they draw 30 minutes after, an hour after, and two hours after... Just to see how high my blood sugar goes in those certain amounts of time. The great thing about all of this is, they didn't have to put a needle in my vein not even once!! How did they do it you ask? They just used my port for the whole thing :) Now usually, in my old clinic - they would LAUGH if I asked them to use my port.

Second and final appointment - ENT! I am not even going to lie, I was scared shitless for this appointment. I hate ENT's, I don't want people poking or prodding anywhere near my face. My ENT's name is Dr. Nayak, and wow is he AWESOME! He made my whole appointment so pleasant. So, you remember the facial scan I got done on my first day of appointments? Well he pulled that up, and showed me that some of my sinus area (pockets) in my face were a little grey, but not too bad. Then he went into my nose a little ways (until I had to sneeze) and video recorded it. He then showed me that my left nostril looked beautiful and my right nostril looked great until you get a little bit more up there, and I have a tiny tiny baby polyp starting. But he said that he doesn't see me needing sinus surgery or anything for a long while. And that most people with CF at my age, have already had 2 sinus surgeries and frequently need to see the ENT. He said my nose looks pretty much that of a normal person. This really excited me! Because I always feel like I have EVERYTHING wrong with me. Ya know? Lol. Anyway, so he said just to keep my nose lookin' good, he prescribed me some steroid nose spray, 2 puffs in each nostril, twice a day. And he also said to go pick up some sinus rinse packets, and start doing just 1 rinse a day. I told him about my ear history and that I was a little concerned so he said to just try it out, try it once a day, and if it doesn't hurt or make any pressure for my ears, that I should be okay. :)

So that's pretty much everything. I wanted to give everyone an update. I am just so excited about Stanford and I feel like good things are going to happen!

Sorry I haven't posted in a while - I will try to keep up :)