Finding Friends with CF

[JennaB]

Hello Everyone -

I am new to the board... I just recenty discovered this forum a few days ago, and I instantly became addicted! I am 25 and was diagonosed with CF when I was three months old. I consider myself very healthy; I have never been hospitalized since my diagnosis. I have only been on one IV treatment, had two sinus surgeries, and have had three lung infections in my life. (Knock on Wood!)

I recently got married a few months ago to a wonderful man who is 100% supportive of me in every way. I am very close to my family, and I am a very happy person. However, I have never personally known anyone with CF, and I don't have many friends. The friends that I do have are not friends that I normally hang out with. A lot of the friends that I had in high school are out of the picture (believe me, it's for the better) and ever since I have been kind of hung up about becoming really good friends with anyone. Partly because of the bad experiences that I have had with friends in the past, and partly because I don't like the idea of having to tell someone all over again about my CF.

I have always felt like I have had something missing in my life because I have not had a friend with CF. It would be nice to talk to someone that has the same thoughts, feelings, and experiences as me. That is one reason I love this forum so much.

Does anyone know of a way I could meet someone in my area with CF that's my age? I am wondering if my doctor would be able to help me or is this information confidential? I live near Memphis, so I know there are quite a few, I just don't know how to go about it.

Thanks for any advice that you can give me! I look forward to posting on this forum more often!

Jenna

 

[anonymous]

Jenna, about asking your doctor, you can give your contact information to them and ask them to offer it to that information to other CF adults in their care that are looking for others to talk to. You might have to sign something for the doctors protection, but if you do it that way nobody is breaking anybody's confidentaly.
Best of luck,

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Jenna,
I have a lot of "online" CF friends.
One reason is because of the risk of cross infection (you catching or giving something to another fellow CFer). I've read that when CFers get together for a conference, etc, there is a 3 foot rule--where everyone has to sit at least 3 feet away from each other to minimize the risk of giving one another something. Also, they don't handle the same serving utensils, etc. So this would be one thing you may ask your Dr about & take into consideration when meeting your CF friend.
It does help so much to be able to share feelings & know someone out there is feeling/experiencing the very same feelings.
Good luck and Welcome!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

Make sure you and whatever friend you meet know what you're both risking before you start hanging out together (talk to both your respective doctors, etc). But if you both know the possible risks, then it's your decisions whether or not to see another CFer. If you both know what's going on and still choose to hang out together, then rock on. I still think it's a good idea a lot of the time (I constantly think in quality instead of quantity). Just make sure you're making that decision with all the information you need in order to make it intelligently. <img src="i/expressions/rose.gif" border="0">
Oh and the last poster was right as well. If you don't wish to play with possible cross-contamination, online CF friends are great. I have several of them. You can still talk and relate that way.

 

[JennaB]

Thanks for the advice everyone. I never thought about sharing germs and all that. That's something to think about. I remember that my doctor always had CF picnics at his house every year when I was little, and my mom was always afraid for me to participate, so I always stayed away from them. I had completely forgotten about all that.

 

[dresapp]

Do you go to a CF clinic or center. I do and everyone who isnt cepacia positive or has any other transferable infection sit in the same waiting room and ive met some great ppl this way. We also have a local CF chapter and support groups. All they ask is if you are sick to wear a mask and keep your distance. If you do have cepacia than usually they have thier own groups and clinics to keep us seperated. I would ask about these and see if you can get involved. Even getting involved with fundraising and promoting awareness in your area you can meet CF families and great friends. Just use common sense when you are ill or around other CFers. As long as your not coughing on eachother or using eachothers utensils or sharing food and drink you should be fine. If your worried about catching colds than no one would say anything if you wanted to wear a mask or something. Its not as personal but ileast you can meet some other cfers in person instead of the net all the time.

 

[JennaB]

No, I dont' have Cepacia. I am not even familiar with this, as I posted on another thread earlier. Thanks for the great advice. Promoting awareness is something we should all do and it sounds like a great way to meet ppl.