Sound Off: CF Member Room

Since we have some new people aboard, I would like to bump this thread up. Come on everyone, post your info!

Kelly.....it's good to have you! If I miss saying Happy Birthday on Tuesday........Happy Birthday!! Hope your day is swell.

Burn! how nice of you to post the uplifting and encouraging post. Thanks!. and welcome to HW!.

I hope your site is doing well.

Hugs!

Good to see you Olivia!

Hello!! I have been on here for only a couple days, but my name is Drew (I'm a girl!) and I will be 20 in about a month. I was diagnosed with CF when I was 2 years old. My cousin was born with pneumonia and they tested her for CF, so as my parents read about it, they realized that those symptoms sounded very familiar and had me tested. I am doing very well CF-wise! I am attending college at Georgia State University in Atlanta, Georgia, and I will be graduating in 2007 (after only 3 years!). I had a very active childhood, which is probably what has caused me to have so few complications due to CF. When I got to college, I started to slack off both treatment-wise and exercise-wise, but I have gotten back into a good routine. I had sinus surgery in 2004, but I have managed to keep myself out of the hospital for all of my life. I volunteered to go into the hospital at the start of 2006 because I wanted more energy and heard from other CFers that IV antibiotics would make me feel like a new person. However, after spending two weeks in the hospital, I felt even worse and my PFTs were at the lowest they had ever been. Who knows?? Maybe my body is sick of all the medicine! I had a CF appointment about a month ago, and my PFTs were up significantly, so I guess my body just does want it wants to! I do several breathing treatments every day, and I usually exercise for airway clearance, with occasional hand-clapping. I take enzymes when I eat (when I remember!) and an assortment of other pills, including Singulair, Zithromax, Caltrate-D, Multi-Vitamins, and Vitamin E. I am very short for my age (although most of the females in my family are!), but I have an easy time maintaining a healthy weight. Although the CF doesn't affect me too much physically right now (knock on wood), I have been fighting a constant mental battle with it ever since I've been in college. It's hard to grow up and try to make life-choices when there are constantly statistics hanging over your head. Well, I think I've probably crossed the limit of how much I should say before people stop reading, so that's all I'll say for now! I am actually finishing up a treatment before I go for a CF appointment at 12:30. Hopefully I'll hear some good news! I look forward to getting to know all of you!

<3drew

My name is Mark Robertson, I'm 42 and have CF. I live in Oregon

 I'm two and a half years past my double lung transplant, and doing awsome.

Hi Guys

I have been here before, and lost my login information so I re-registered. My name is Angela, and I live in Halifax, Canada..way to the east! The reason I am speaking in these forums, is because I had a sister, Beth, who passed from CF in 2004. I want to help any way I can to others who have CF, or have a loved one with CF.

CHEERS!
-angela

Post Edited By Moderator (Admin) : 4/4/2006 9:54:12 AM (GMT-6)

hey Twinstride,

answer to you question. My lungs are perfect. My PFTs are in the high 90%

I feel awsome.

BUMP!

Hello everyone! My name is Kathy and I am a CF parent. My daughter Kristin passed away 11/00 from CF complications (respitory failure) at the age of 10 but I have a 7 year old son (also has CF) that is doing extremely well. I moved to southern Oregon from Texas 5 years ago and found that treatment regimes differ quite alot from one clinic to the next. Has anyone else encountered that problem? My kids were almost opposite in severity, Kristin had severe problems that normally didn't show up until late teen (on average) before she was 6 but my son has only had upper respitory (sinus) problems that was easily controlled with oral a.b. Thru this experience, I have discovered one on the most important things to have (besides an excellent medical team) is mental/emotional support so I'd like to encourage any new members to speak up on the forum--I learn something new everytime I log on!!!! It also helps to know that there are alot of people that know EXACTLY how you feel and what you're going through--something that is very hard to find outside the "CF family". Keep on taking one day at a time and never stop having dreams for the future.

Oh Kathy, I am so sorry to hear about your daughter being of such a young age passing away. My boys are 10 right now and what a blessing to have them around. Just what mutation did she have? or do you know?

My name is Liz. I'm 24 years old, and was diagnosed at 6 weeks of age. My mutation is double delta f508, I have digestive problems and mild lung involvment. I was diagnosed with diabetes at 14 years of age, and had a severe episode of hemoptysis 2 years ago which required a pulmonary embolization. I take 5 enzymes with every meal, take 1 tablet of zithromax every monday, wednesday and fridays to keep lung inflammation at bay, I'm also on Symbicort and albeuterol twice a day and am on inhaled Tobra one month on, one month off. I also take a couple of supplements to help with infection, etc. I take one tab each of Oil of Oregano and garlic daily. Oil of Oregano is very beneficial at combating all sorts of bacterias in our lungs, especially Pseudo. If you like, I have a lot more info on the oil of oregano. I definitly notice a difference now that I'm on it. I do physiotwice a day which consists of me using a precussor, as well as the Acapella Choice every other day. I also take Ranitidine for acid reflux. I currently don't work - I had to quit my job due to stress, weight loss, and continually feeling run down, but hope to find part time work very soon. Just a little bit about me.