I'm new here

S

New member
Hey all, just wanted to say "hi" and introduce myself. My name is Steve and I live in Newport Beach, CA, am 27 years old, and have cf. I have a pretty mild case, which I feel fortunate for because it has allowed me to do quite a bit in my 27 years. I worked in the music biz for 6 years with some of the biggest bands in the world, travelled around Europe for 3 months in 2002(non-music related) and didn't even get sick until the very end--while in Interlaken, Switzerland I was able to go whitewater rafting and even jumped out of a hellicopter from 12,000 feet while surrounded by the Swiss Alps...I figured if i'm going to die then that wouldn't be a bad way to go. I am usually in the hospital 4 times a year, usually every 3 months or so, it's like clockwork! I was in last week for 5 days, my shortest stay ever...it's usually around 10. In October I was in and unfortunately experienced a loss of my vestibular system due to ototoxicity from tobramycin. I'm not sure if it was just that one course that did it or if it had been slowly building over the 12 years I had been taking it. The part that sucks most is that surfing may be out of the question from this point on, depending on how pt goes. The beach has been my life since I was born and this is something that has hit me hard. The first time I was ever really sick from cf was in 8th grade, it was my first time on i.v.'s and my first time in the hospital. I have been dating a girl for the last 3 months, it was a very serendipitous meeting, something that just seemed meant to be. I took her to Paris(asked her to go with me 3 weeks after we met) for a week last month, including Valentine's Day. It was her first time there, she had taken french in high school just so she would be ready to go after graduation...alas, 10 years later she had not yet been, so I figured it was the perfect time. My sister also has cf, but is even more mild than I am. I can count her number of hospitalizations on one hand and still have a couple fingers left. Well, enough of my random sentences for now...

<a target=new class=ftalternatingbarlinklarge href="http://img.photobucket.com/albums/v97/forgotaboutsteve/stuff/eiffelsteve.jpg">Pic of Me</a>
 

Mockingbird

New member
Welcome to the group. It sounds like you've done a lot which is way cool. Bummer about the surfing thing, though.

Jarod
22 w/cf
 

TinyLaBruja65

New member
lol yes, welcome to the "group" me and jarod are the leaders -bows- thankyou, thankyou, haha i wish..just kidding...welcome to the group <img src="i/expressions/face-icon-small-smile.gif" border="0"> always nice to have new people...
 

anonymous

New member
I dont have CF but I have twin girls, 5 mths old that do!! Just wanted to say hi!! Good to hear all the amazing things you have been able to do! That is awsome!

Loved the picture!!! I guess the saying that CFers are cuter and smarter is true!!! Well I guess I dont know about the smarter....LOL....just kidding!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

S

New member
I was at CHOC when I was a kid, but now go to Long Beach Memorial. My doc and the team up there are some of the best around! How about you?
 
Thats where I go, too! I used to see Dr. Nussbaum (loved him!) and I should see Dr. Riker now but he doesn't take my insurance. So now I go to Dr. Tanios (another great guy) who is a pulmonologist but not with the clinic. He collaborates with Riker about me, and he even wrote a letter to my insurance company to see if they would let me see Riker because I need to be seen at a clinic but Blue Cross denied the request. I agree with you that they are the best around. I love the whole team; in fact Julia Greenwald is invited to my wedding in May. I usually go in the hospital about every 6 months; last time was Oct/Nov. Do you get a Picc or do you have a port? The reason I ask is because I usually get a Picc put it in, but it is like pulling teeth to get it the way I want. They have tried numerous times to get them in at the bedside and they don't work, so I request to have it done in radiology. It creates such an uproar with the radiology nurses! I was just wondering if you have the same problem. I was also wondering what it meant to lose your vestibular system from Tobra? I'm on Tobra a lot too so I'm curious to know if there is something I should look out for.
 

S

New member
Riker is my doctor and because of that I have no problem getting into radiology to have a picc placed. Riker writes on my admission papers that it is to be put in only in radiology and they know that you don't mess with him. It may take a day or two because of how busy they are in that department, but everyone is always cool when i'm down there. The last time they tried to place one in me bedside was last May and the nurse ended up hitting my artery...not fun seeing blood shoot numerous feet out of your body. For info on vestibular damage you can check out <a target=new class=ftalternatingbarlinklarge href="http://vestibular.org/ototox.html">http://vestibular.org/ototox.html</a> , that site explains it way better than I ever could. I wonder how many times we've been right down the hall from eachother?
 

Becstar

New member
hi steve just writing to say well done it sounds like you have worked very hard but yet again all cf victims have to work hard
 

anonymous

New member
This is Tina from Oklahoma. I stumbled onto this site while looking up what exactly CF is. I have a foster baby I am trying to adopt and since we have gotten him he is sick all of the time. I always knew something wasn't quite right, like maybe he could have a mild form of the disease. The doctor is having him tested on May 5th. Can you tell me some of your symptoms since you say yours is milder than most? Zachary is constantly coughing and wheezing, his nose is always green and running halfway down his chin! And there are even times when he is coughing he sounds like a seal barking really loud. Like he is struggling to breathe. The doctor has prescribed the albuterol and breathing machine. We have looked into allergic problems, done dose after dose of antibiotic and daily allergy medicine. Does any of this sound familiar? Maybe even ask your sister since hers is pretty mild too. I hope you don't think I'm being stupid asking you these type of questions, but since May is a ways off, and alot of times the doctors think you're crazy, any info would be appreciated.
Good luck! You sound like you have had a fun life! Your picture is awesome too! Have a great week! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

JohnnaMarie

New member
Welcome to the site! Sounds like you have been on lots of great adventures. Great Picture! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Tina, did anyone ever get back to you on the CF stuff. if not, or you have more questions please feel free to email me at division902@hotmail.com.

Julie (wife to Mark 24 w/CF)
 

thefrogprincess

New member
I always like hearing from people in their 20's with CF (I'm 23). We've kinda reached that special point where we can take care of ourselves and to hell with everybody else!!! Haha. I guess its just that having peers is pretty cool.
 

anonymous

New member
very interesting and inspiring post.....I stumbled upon it while looking up Dr. Riker's address, my 22 year old daughter is one of his patients (lives in Newport too!) She is often feels like she is the only one on the planet with CF. She also been fairly healthy and very active in sports, swimming etc... and suprised the staff at Long Beach that she works as a lifeguard part-time while a student at UCI. I am going to pass on your post to encourage her. She recently became covered by GHPP...(A California Program) and now has her Dr. Riker visits covered. I would think you would eligable. Congratulations on your happiness.
 
I just got home from Long Beach Memorial tonight. I was admitted on Tuesday after 3 weeks of home IV's and got a bronchoscopy yesterday. I called it my "Prenup Tune-up" to get me all set for my wedding. I told Dr. Tanios that I would agree to go in if he could have me out in time for my bachelorette party in Vegas next week! He stayed true to his word...although I will still have an IV in my arm, but I can deal with that!
 
L

luke

Guest
lindsey,

save your money on vegas come to WV, I have some "nicely rounded" friends that will dance for women for free. And don't worry, what happens in WV, stays in WV!

Good luck on your wedding.

luke
 
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