One Huge Update

To start of the past 5 months I have been on 3 antibotics to fight the bacteria I am growing, mycobacterium avium complex, or in other words, MAC. I cultured this after I had my Bronch back in January. I was referred to an infectious disease doctor. After that my lungs have been feeling pretty good. My PFT's are up 3 percent and have been staying there at a good steady 75. My problem lately has been my stomach.

I have been having a lot of GI problems lately. My GI doctor though it may have been acid reflux so he upped my dose of Prevacid, helped for a bit, but not enough. Then he had me get a CT and X-ray of my tummy, I was blocked, so I had a few different methods of rinse outs, helped for a while, then the pain came back and this time with lots of nausea to accompany it. Finally he felt my gall bladder and it was sensitive, so he had me get an ultra sound, and it looked fine, but the next appointment it was worse, so he scheduled a HIDA scan. The results showed that my gall bladder is not emptying right (whatever that means). I know have to meet with a surgeon, who will let me know if it is CF related or if there is something else going on, and if I need to get it taking out. I want the problem to be fixed, but I really don't want to go through surgery right now, I don't want to have to sit out my senior year of cheer. If it is not urgent, I rather wait to Winter break, or Spring break, even Summer break if I can.

Today though I saw the surgeon. There were lots of questions and poking and going over my results and symptoms. & he came to the conclusion that I do have chronic cholecystitis (also known as gallbladder dysfunction) which means my gallbladder is not emptying right, but he does not think that is my problem right now, meaning he doesn't think I need to get my gallbladder taken out. The HIDA scan also showed that I have biliary-gastric reflux, where the bile that breaks down my food is going back up into my stomach and is breaking down the mucus lining in my stomach. He thinks this is what is causing the nausea and pain. He is sending me back to my GI doctor to get an endoscopy of my esophagus and stomach, and some medicines to help. So no I have to go back to my GI doctor and get that looked at, but may still need to get my gallbladder taken out anyway. So now it is another waiting game. More updates to come after I meet with my GI doctor.

Long story short: lungs are good, GI is a mess. Hoping for the problem to be fixed.

More doctors equals more inconvenient.

Boy has it been a busy month. Since my last post on Christmas I have gone to six different doctors appointments. 4 CF ones, 1 GI and 1 sinus. I have also got a picc put in and had a bronch done. For those of you who don't know what a bronch is, it is when my doctor goes down to my lungs through my mouth, squirts some saline,, sucks up some mucus and basically cleans me out and takes samples of my mucus to see if I am growing anything. Before I got my picc in on the 19th of January I blew a 72%. A couple days later I had my bronch. THen today (2 weeks after my bronch and 2 weeks with my picc) I blew a 73%. My sats went up 3 percent. But my PFTs basically didn't even move. It doesn't make any since. The bronch showed that I was growing a STAPH which we already knew and that is what the vanco and cefepime are fighting (my 2 iv meds), but today I was told I am also growing a seperate bacteria- a think they said it was mycobacterium avium . This one is obviously not being affected by my IV. My doctor decided to refer me to a infections desease specialist. Apparently he is suppose know how to treat this bacteria. I go back to see the doctor next Friday. Which means I have to miss school and have my PICC in during the assembly. This stupid PICC line sure is making cheer difficult. CF is really kicking me in my butt right now. I hate it! I am suppose to be the one kicking it's butt, not the other way around. I am tired of doctors, tired of IVs and just plane tired. This whole CF is becoming more and more inconvenient. Hopefully DR. PC (the infectious disease specialist) will be able to figure out how to treat this stupid bacteria so I can be back on my ball. School has been tough lately. I am not getting any sleep because of school, cheer wares me out sometimes. I think I need a break! Ahhh!

A Bronch It Is.

I had a follow up appointment today. After being on a week of being on clindamycin and extra treatments what did my numbers do? Well I have no good news with that, they actually dropped 4 percent. I was at 74% a week ago and today I blew a 70% and that was on my third try. At first I blew a 69%. I just can not figure it out. I feel fine, but there must be something wrong. I have been doing oral antibiotics and steroids since October. We tried bactrum once, prednisome twice, ciprofloxacin once, and now clindamycin and my numbers haven't change much at all. They were going up a couple percent, but now they have dropped. For the past couple of months I have also had this tight, crackle sound in my lower right lobe, this is the reason for the Bronch. My doctor thinks I may have something growing there that is not showing up on my throat cultures. At first my doctor suggesting IVs, but I fought that so he suggested the Bronch. I was kind of worried at first because when my sister gets her Bronchs done she always ends up more sick and I just do not want to have to deal with that, but I talked to a few of my fellow CF-ers on cysticlife (what a wonderful site!) and they all said it was okay. So I agreed to do the Bronch. We have it scheduled for January 15th. The only problem with that though is that that is the Saturday right before finals week. I really hope this works and I do not get sick like my sister because if i do well then poop, there goes my grades. If they find something growing in my lungs then I will be put on IVs and if I get sick I will be put on IVs but if they do not find anything hopefully the clean out will help me feel better, if not then we are at a dead end and do not know why my numbers are dropping. Hope all goes well!!

Getting Nosey about CF with Oli and Nush

This video is adorable and a perfect way to describe CF and what it does to the body and why we CF-ers do things the way we do.

It has been a while since I have been on my blog. I have been so busy with school and cheer and getting sick and then getting over it and then getting sick again. Okay so I have going to the doctor a lot lately, well this year in general. My numbers are not dropping anymore, but no longer are they going up. I hit 81 when I was on IVs over the summer but sense then they have dropped to 72 and as of my last appointment 74. I have been put on a few different rounds of oral antibiotics, but they haven't really helped my lung function any, they have made me feel tons better in general but my lung function hasn't really gone up any. At the doctors he suggested that maybe I am growing something else other than just staph, something deeper in my lungs. For the past couple of months every time I go to the doctors they have been saying I have this crackle in my right lower lung and he was saying that maybe there is something growing down there that isn't showing up in the culture (when the swab me). That is when he brought up the idea of getting a bronch done. I have never had one before, but that word worries me because my sister has done it a couple of times and every time she gets it done she just seems to get sicker and has to be put on ivs, not because they found something growing or anything, but the procedure in general just seems to do something that makes her lungs tired and then she gets sick. I don't really want to get that done and then still have to be put on ivs, it just worries me. My other option he said was to go on another round of ivs. I had my second picc (after 6 or 7 years of not having one) over the summer and that was because I felt like crap and asked for it. Now I don't feel bad. For the most part I am feeling pretty dang well, especially for just getting over a cold. Personally I did feel like I needed IVs. So I asked for a third option. He said that we could try another oral antibiotic for a week and see hows that goes and I jumped for the option. I promised him I would get all my treatments in plus some and along with doing the vest I would have someone pound on my lower right lung to get all that gunk that is causing the crackling loose so I will cough it up. He rather do the IVs or the Bronch but he liked my plan and felt like it was my choice. I am just not ready for another PICC. I was hoping I could go longer without needing one; i especially don't want it during cheer season. Well anyways hopefully this oral antibiotic and the extra treatments with extra pounding (PT) my numbers will go up and the doc will be satisfied. I will keep you updated.

On a better note.....MERRY CHRISTMAS!!!

You may ask why I am blogging so early christmas morning and my answer to that is because I wake up so early on christmas, but my parents wont let me wake them up till a certain time haha. I needed something to do so I decided heck, mine as well updated everyone on my recent doctors appointment. I love Christmas, it is such a great time of year. It makes me so happy and helps me to feel good no matter how I am physically feeling. It is a time of love and family. The kids on Christmas Eve

wow it's been long!

Wow. It has been so long since I have been on here. School really get's in the way of everything. I have been so busy with school, cross country, and trying to keep myself healthy. It is all going good so far. I have been able to keep my grades up. All A's and B's still. And I managed to keep myself healthy when everyone at my house was sick! I did end up getting a cold from some kids at school, sadly. I am still in the process of getting over that. Cross country definitely got better. My best run so far was probably the one at Rancho High School. It was a 2.8 coarse and I ran it in 26.08! Or something like that. I don't remember it was a month ago. My last couple of meets haven't gone so well. I had to sit out of one because of stomach pains, hurt so bad I couldn't even stand up. Then I started one but coach made me get out because I was coughing so much at the starting line. I couldn't breath and the race hadn't even started yet! Then this last one I ran a good 2 miles but then I started throwing up and my friend that is also on the team that ran early pulled me out. I was mad at him for taking me out of the race but he made a good decision there was no way I could have finished that last 1.1 mile (which may i add had 2 hecka steep hills!) He walked me to the shade where I through up so more and then we walked back to where my team was and I laid down in our shade and slept for 20 minutes. I felt better after that but since I haven't ran good my last 3 meets coach won't let me run regional this weekend. I guess that is good because there is no way I am getting over this cold before then. Oh well. Cross country was such a help though, it really helps keep my numbers up! I had a doctors appointment. Actually I had two in one day. My stomach doctor has been a real pain! I had an appointment with him 9/16/10 and all he said was keep doing what your doing and ill see you back in a year. Seriously?! Obviously what I am doing is not working seeing as I am still having stomach pains that make it that I can barely walk! He doesn't do anything! So we called my CF coordinator and she said that we need to call and schedule with him and see if he will do anything and if not we should find a new doctor. So we reschedule. 10/11/2010 i lost 3 pounds since the last appointment. He finally is like oh that's not good we need to do something about this. No duh! He put me on a new medicine called mucomyst and pumped up my miralax and my ducolax. Hopefully it will help. So far I have seen a little improvement. Im real dissappointed about the whole thing. I was doing so good far a while. My weight goal was 117 and I was almost there! But then I had to go and loose 3 pounds and now I have nothing to impress my CF doctors with at my next appointment. So I ended up getting a cold. A real bad one I might add. I was coughing non stop and it was a nasty sounding cough too. After my stomach appointment I went back to school for a couple classes and then left for an appointment with one of the CF doctors. My SATs were 99 which is great and my FEV1 was 74%. I was surprised I was still in the 70s. But that is down 7% from my last appointment (which was when I got my picc out). The doctor put me on bactrim and prednisone. He also said to do a nasal saline spray prior to my nasonex which should help get things moving in my sinuses. Since then I have started feeling better but the cold still wont leave. I am still coughing tons!! I am ready to feel better again. I'm pretty sure I am almost over it. But yeah that is my update. Oh and my brother goes into the hospital tomorrow. He got a cold too but he ain't doing so well. His PFts are usually in the high 80's well at his last two appointment he blew a 69 and a 71. Super low for him. So he is getting addmited tomorrow and getting a PICC. Hopefully it goes well.

I'll try and keep my blog more updated. Time management is key!

Next appointment is CF clinic on 10/24/10.... 5 days before my 17th birthday!!

Christina & Ali America's Got Talent Semi Finals Aug 24, 2010

They made it to the top 10! Go Christina and Ali!