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 :)

Hello! I hope you all are well :) Well I am home from the hospital, I was discharged last week on Monday. I was in there for 22 days. It seems sad to say that I am so used to being hospitalized anymore that it didn't seem that long. I remember when I was younger, after 3 days I would pretty much be going crazy, crying, wanting to go home. Well I am home now, and coming back with a bang! Sorry - I feel like I should correct this, by "home" I mean I am at my moms house out in Bella Vista (about 30 minutes from town), because she feels better that I come back to her place when I am on IV's, plus I am living by myself right now and I don't have my handsome husband to help me out. Being sick and doing IV's around the clock can actually be pretty exhausting.

They sent me home on IV Doripenem, 3x/day. 8am, 4pm, 12am is my schedule. It works with me, I tend to stay up late usually, but sometimes I cheat and take it an hour early at night (11pm) because I am just darn tired. I have been doing my vest consistently now for about two months. I can really feel a difference. I am also on Azithromycin 250mg 1x/day and oral Zyvox 2x/day. I should be done with all my antibiotics by next Monday.

This brings me to my next topic. About 3 months ago, I got my first port-a-cath! It is located on the left side of my chest, above my breast and right below my collar bone. The first month I had it, I had no need for it to be accessed so I wasn't familiar on what it was like and what the actual 'procedure' was to access it. When I was just recently admitted to the hospital, they had an oncologist nurse access it for me. Since it hadn't been access or flushed since the day that I had it put in, they had run into a little bit of problems. They had to put some stuff into it, I forget what it's called... basically it's like mega heparin, and you let it sit for a while, then, about 30 minutes later, they try to draw back, and if it is successful, you can draw the blood back into the line. My port has been drawing back good since, so that's good. When they access my port, all they do is spray it with this cold spray, which basically is so cold, it numbs the area... I wouldn't say it numbs it as well as a emla cream patch or a lidocane shot, but it does the trick. They hold the port with their thumb and index finger, and they have the needle, count to three, I take a deep breathe, and then wala, it's in! Soooo much easier than any IV or PICC i've had. Even easier than the broviach. Out of it's pros and cons, I would definitely say I love it more than I hate it. It doesn't stick near as far out of my chest as it does in some patients and when I wear my bra, my boobs are supported enough to where you can't see it in the least bit. Just a tiny scar at the top, which will fade in time. I just have to make sure I keep it clean and dry, and free of infections!

And on that last sentence brings me to my NEXT topic... I always tape my IV's up when I shower, i'm not THAT stupid lol. But I seriously have the biggest issues with tape. I find that the tape that works the best for me is the see-through tape that pretty much hurts like a bitch when you rip it off. Yeah it hurts, but I'd rather keep the site clean and dry than have tape that doesn't work very well. I tape a piece of a decent sized folded saran wrap square over my site, and then cover that with foam tape. I don't know why they even make that foam tape. It really sucks, and I think nurses just assume that it is water proof, because it feels like it would be. The adhesive on that tape is a joke. Long story short, I wrapped my line up all nice to take a shower on Sunday, and it got SOAKED, and not only did the dressing get wet, but the actual dressing itself had gotten water in it, and since the dressing cannot form a seal perfectly around the port because it is not perfectly flat, there is basically space and air around the port needle itself, so water managed to crawl it's way in there and literally saturate my needle. My needle was swimming in water pretty much. It wasn't like it was just damp with condensation, it went full on titanic. Naturally I was freaking out, because I just really don't want to have to deal with an infected port right now with everything else going on in my life, well I never do on that note, but you know. So I did the first logical thing I could think of, and got my new port needle dressing kit out. Well I don't access my needle myself so there is no way in hell I was going to do that. But I have cleaned my broviach and PICCS before, so I figured this wouldn't be too different. I washed my hands thoroughly, put on my mask, and then took the choloraprep sponge and wiped all around the area, and had the edge of the sponge thing touch the needle that was poking out of my chest. I let it dry for about 3 minutes and put the dressing on it. Everything seemed to go smoothly, although I was so paranoid about getting an infection. Most people told me to change the port needle right away, but I just kept a close watch on it and everything was fine. No redness, tenderness, swelling, fevers, nothing that clues infection. :) Yay! Plus I got my needle changed yesterday because it had been 7 days, so I think we are all good!

Well other than all that, I am feeling pretty good still and I am weaning off my oxygen :) But I am still sleeping with it at night! My weight has been good, and I think I am strong enough now to start doing exercises on the Wii again! Nick comes home in 31 days, so I wanna be in tip top sexy ass shape ;) Lol! If I can't be nice looking on the inside, I at least want to fake it on the outside.

xx

I hate being being sick ALL the time. It's horrible. I am a jealous mean person when I am sick. Nick gets to go to all these fabulous places, like DC on the 4th of July, and last weekend he was going to theme parks.. all while I am stuck here. It's true, misery loves company... and when I am miserable, I hate hearing about peoples amazing lives. I know I sound like a mentally messed up bitch, but it's how I feel... and the point of a blog, is to write how you feel.

I want to have some fucking fun too. The only fun I ever get to look forward to is my next pain pill.
I just want to go home now. Home home, not my moms house, but home.

WIth every blog I create, I always manage to put it on the back burner. I am sorry you poor neglected blog. But it's okay, because I am updating now, even if it is the only update you'll have for the next two months.

I was admitted into the hospital two weeks ago on Monday, which would make that June 14th, and I am still here. Plans are for me to be discharged as of Friday, but we all know I probably wont be leaving the hospital until Friday night, just because discharge planners like to take their precious time. I'm okay with that though, there is nothing I am rushing to get to.

Since I'll be on IV's at home for 2 weeks, my mom wants me to stay with her, just to make sure I don't forget any doses and I think she feels more relieved when I am in her care directly after a hospital visit. I'm okay with going to her house, I just hope that I don't get too irritated with all the kids and people around. I am so used to being alone at home. It will be nice though, to have someone to talk to again.

When I came into the hospital I was on 3 liters of o2 at home, they bumped me up to 4 once I got here. I am now down to 2, and I am hoping I can wean off by Friday. If I can't, I do have my oxygen concentrator at home, but life is much easier when you don't have to drag cords around all the time.

I'm still culturing my mycobacterium, psuedo, staph, and aspergillis. As far as I know, the mycobacterium isn't really causing the problems, it could possibly be the psuedo/staph combo, and I am being left untreated for the aspergillis right now, just because it is not really a threat to my health right now. I am being treated with IV: Zyvox, Doripenum, Collistin and orally I am taking Azithromycin 250mg 1x a day. That seems to be the combo that's kicking ass. I will be going home on just the Doripenum for IV's, we're dropping the Collistin and doing Zyvox orally with Azithromycin. What a lovely cocktail.

I finally have my first appointment at the CF clinic in Stanford! I am so excited for this. I really feel good vibes from this decision. Face it, my lungs don't have the time to be bounced back and fourth between doctors and decisions anymore.. we need a doctor, and we need a decision. From there we are going to see about what we can do to start transplant evaluation. A big weight will be lifted from my shoulders once I have a team that wants to work with me instead of against me. Let's hope I have good luck there :) Goodbye UC Davis. It's almost bittersweet, because I was diagnosed at UCD and have been going there since I was 3 months old.... and now I am saying goodbye to them. It's time for a new chapter in my life, and I am ready for it.

I found out that the vest has PINK vests now, so I ordered one. I hope it comes soon!!!

I end this with love, love to my fellow cystics, and to Connor and his family<33 Breathe easy lil' man.

Feel free to ask anything :) I am an open book! http://formspring.me/aleeesadarling

I know for me, having faith in something makes my life a whole lot easier when I am sick, or feeling down. When I say faith, I don't necessarily mean faith in a God or a higher power, but in anything that you believe in that can motivate you. Maybe even faith in yourself? I personally, am Christian, so I do have faith and a strong healthy relationship with my God. I also have a lot of faith in myself. I think faith is a good thing to have, for anyone. What is your faith in?

This is just going to sort of be a ramble, but you can take it as you please! I've realized that when I get up in the morning, I hate getting up out of bed, making my coffee, and heading straight to the shower (or if it's a no-shower day due to IV's, washing my face). A lot of times I will wind up just sitting around in my pajamas all day, and then at the end of the day, I feel like such a loser for hanging out in PJ's.

I think we all need to find that EXTRA oomph, in the morning. I have not found mine yet, but when I do, I will let you know! Because I have noticed when I am able to get in the shower, afterwards... I feel so much better! Following the shower I MUST get dressed though, because if I don't, and if I just put my PJ's back on, I will go right back to lazy town, except in a more cleaner sense.

I know your probably like, and how is this related to your health? Well I feel like if you get up in the morning, take a shower, etc... you are more likely to get more treatments in a day, vests, walks, exercise, anything! I know for me, if I take a shower and get dressed, I am ready to take on the WHOLE entire day. I even set my food out in the morning for dinner, start cleaning here and there, and maybe even go into town for a while, and try to walk around.

I know if I stay in my PJ's I will do none of this, and a lot of the times, I will even skip treatments, I won't eat right, and a whole bunch of unnecessary stuff, just because I couldn't get my ass into the shower LOL! And that can make me feel sicker than I actually am. So what I am trying to say here is... Take a shower! :) LOL. Common sense, I know... but a new way to look at it?

love love love,
Alyssa Crank