New Cystas and Fibros

Well I know I have some new Cystas and Fibros following my blog since I last posted my CF about me so I thought I would re post it. If you haven't done one of these or if you don't have a blog I encourage you to do both. I have found some amazing friendships thru this blog and am so very blessed to have such a great support system that I haven't met. Xo

~I was diagnosed with CF when I was 11 months old on a hunch. My mom read a newspaper article that said “kiss your baby disease” If your child tastes salty get them in for a sweat test to see if they have CF. So she licked my bro and I and I guess I tasted salty. She called my pediatrician and told him she wanted me to come in for a sweat test. He assured her I didn’t have it, I was a very chunky baby and there is no CF in my family history. But she insisted and so he did it and called her the next day crying. The docs told my parents I wouldn’t live to be 10 and from that moment on my two fabulous parents chose to fight my disease and when I was old enough I joined the fight. Look at those cheeks :)

~My parents started the CF Chapter here in SLC after my diagnosis and I was a poster child for many years and attended many functions in the community to help raise money for a Cure. You can read more of my story and see photos of these events at www.lovetobreathe.com a web site that my bro put together for me.

~ I was first hospitalized when I was 7 and I didn’t start enzymes until then either. This is a pic of me in the joint for the first time

~ My lil bro was adopted. My parents always wanted 3 kids but they didn’t want to chance having another Cfer. The pic below is the day we got Shelby

~I went to CF camp when I was younger for only 2 or 3 years my mom didn’t think it was very sanitary (smart lady) However I met some amazing people and we have lasting friendships.

~After my first hospital stay I began to do Ivs at home once a year until I was 10 then I started going into the hospital for a yearly tune up. I would usually go in around Christmas break so I wouldn’t miss much of school since not everyone knew I had CF growing up. When I graduated high school I started to talk more openly about CF. When I was growing up I just didn’t want people being sympathetic and never wanted to be the “sick girl” To this day when someone gives me The head tilt, you know the one it is just a lil irritating.

~I danced growing up and was in a performing company we traveled many places to perform including Japan. I did ballet, tap, jazz, hip hop, and modern. I stopped dancing with my dance company my senior year in high school so I could be a cheerleader.

~I went to private school all my life so when I went to college for my first year it was hard to be a # rather than Somer. The college was 2 hours away from my home. I moved back after the first year and continued my career at Nordstrom and worked my way to management. I managed Kids shoes, Jewelry and Savvy.

~ Went to Primary Childrens Hospital until I was 22 I was the oldest patient then I finally transitioned to the University of Utah the Adult CF Center.

~Every time I go into the joint My mom chooses a theme and gets decorations and my parents decorate my room for me. It’s a different theme every time. Unless I am in around a holiday it is decorated from floor to ceiling you can see some pics on my website. The two below were from last March. I took my tap shoes to the joint, they made pulmonary rehab more fun :)

~I had a hard time with piccs year after year and finally after forming blood clots in my arms and being on coumadin on 2 different occasions. I got my “Thipple” in 2005. Many of you may know that as a port but I call it my “Thipple” for third nipple. I SO wish I would of gotten it sooner but it seemed so permanent. I flush it once a month and don't mind it at all. When I first got it I was a lil self cautious about it. I have had many people say some interesting things about it. Once when I first got it I was in Vegas with some girlfriends and I wore a low shirt so it was clearly showing it was my first time with a thipplicious shirt on and my friends assured me you could hardly see it. So we went downstairs and I noticed we forgot the camera so I opted to go get it and I was in the elevator with 4 guys all of a sudden I hear a guy scream "OMG what the hell is that" I was mortified right when I was about to answer the doors opened to my floor so I replied back "thats what happens when you go to a third world country and get a boob job" and I kept walking I didn't even look back. I told my friends they were liars :)

~I went to a chiropractor in 2005 and they found a kidney stone the size of a large gumball by accident. I had to have surgery to remove some of it and break the rest up so I could pass it thru a stent I never felt a thing not even passing the rest of the stones.

~I stopped working at Nordstrom in Dec of 2005 after continuing to get really sick. I was admitted when my FEV1 hit 22.

~ I am very involved in the CF community and try to raise awareness whenever I can. I sit on the Heroes of Hope Panel a fabulous program by Genentech (makers of Pulmozyme) I sit on the board of directors with my local chapter and I send my paintings to different fundraisers around the US. I was in the TOBI calendar for 2008 and helped the Boomer Esiason Foundation out with a campaign with Jiffy Lube last year.

~When my bro got prego with Makena Tammy had to be tested to see if she was a carrier and she was not. However my bros blood test came back showing 2 negative genes (which would mean you have CF) So they actually wanted him to go up to Primarys and get another sweat test it came back negative so it turns out one of his negative genes is mutated so with that mutated gene it makes him only a only a carrier. So my doc thinks I may have 3 or more CF genes. Which is very rare! The pic below is Shane getting his sweat test a lil over 3 years ago

~ 2006 I was in the joint 5 times 2007 6 times and 2008 twice all for 2-3 weeks at a time. I am happy to report the last time I was admitted was March 3 2008 almost one year ago. I am not sure I remember the last time I was out for a whole year. In April 08 I started back up on USANA and also got on the aztreonam early access study.

~ The meds I am on are albuterol (3 times a day) ,pulmozyme (twice a day),Tobi, (every other month)Aztreonam (on my off tobi months), Pulmicor 1mg (In the am)advair (twice a day),pancrease MT 16 4-5 with meals 0-3 depending on the snack azythromiacin (daily) Nexium (in the am) AllegraD (in the am) Vitamin C 500mg (3 times a day) USANA(proflavonal 90, hepasil, coquene 30, Essentials) am and pm) nasalcort (twice a day) During flu and cold season I drink 1 to 2 emergen c’s a day I also drink apple cider vinegar and I have a nose and throat spray that I use pretty regularly they are made by Seagate and I get them at the health store. I drink wheat grass when I can and just try to have a healthy diet. The last oral glucose tolerence test after I drank that drink my blood sugars were in the 40s so they said I was hypoglycemic which I guess is borderline CFRD not sure that whole thing is confusing to me. My airway clearance consists of somergenicsJ a mix of auto genic and other breathing techniques and I use the pep mask 3 times a day I got it after last March and I love IT! I thought why would I use that it is so 10 years ago but I really love it!!! I wear o2 at night and when I work out. I work out on the treadmill and I walk my dogs when its nice. I just started the Tracy Anderson Method and I love it she is Madonnas trainer! Well I think that about wraps it up for my health regime.

I have the old vest but I rarely use it I prefer pounding which I only have done when I am in the joint...

My daily cocktail

~My Last BLOW (PFT) was on Mon My FEV1 was 34 and I am hoping that I will hit a 40 after the next time I receive IV antibiotics. I keep visualizing it.

~ I have been blogging for almost a year now I started at the end of March. I am so thankful I did, I have been reconnected with some fabulous friends and I have found some amazing Cysters. The bond I have with my Cysters I tell ya it is something I can’t quite describe! I have two brothers and I think I know now why I never had any sisters.

~If I could change one thing in my life.... I would opt toNOT change a single thing! I believe I was given this life because I am strong enough to live it! I am SO VERYblessed to have such an AMAZING support system my family and friends mean the world to me!!!!!!

So there you have it my CF About Me I am sure I have left some things out but this is what sticks out in my mind. CF is just ONE of the MANY things that makes me who I am and for that I am grateful!