Wanting to make friends with CF?
- Thread starter dmrayzz
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m.coteklein
Guest
Definitely!
randomgirl
New member
Surely. I actually only know of 3 other people with CF: my sister, a guy from high school, and a guy that had the same transplant as I did (my doc recommended that I talk with him). Every cfer I have met has been understanding and nice (including most people on this site).
Being slightly older than the previous posters, and not too old, I need to coin an acronymical phrase to describe my CF life.
Child of the 70's, grew up in the 80's before B.Cegregation.
I don't know where I would be at now without having had the experience of knowing many other peers with CF. My first time at CF summer camp, I was 6 or 7, and went for two weeks. When I 10, I would go to CF camp for the month of August, every summer, until I was 15.
Yes, many of my CF friends died during the year between camps, and I would see many more at clinics or in hospital throughout the year.
But it's true, CF community was lost and B.Cegregation was instituted.
Another result of which is a breakdown in customer service from CF Clinics. When their own clients can no longer know each, how can we individually know if we're receiving bad / adequate / good care without the context of our immediate peers??
It wasn't until my late 20's when on a drug trial that I again had contact with other CFers. That was a good year.
But that was 10 years ago, and once again, I don't know anyone else with CF.
Someday, maybe sooner, maybe not in my lifetime, mental health issues and the lack of accessible community for CF patients will outweigh the risk of cross-contamination.
I too, would welcome discourse on CF issues, and have lots of experience to share with others.
Child of the 70's, grew up in the 80's before B.Cegregation.
I don't know where I would be at now without having had the experience of knowing many other peers with CF. My first time at CF summer camp, I was 6 or 7, and went for two weeks. When I 10, I would go to CF camp for the month of August, every summer, until I was 15.
Yes, many of my CF friends died during the year between camps, and I would see many more at clinics or in hospital throughout the year.
But it's true, CF community was lost and B.Cegregation was instituted.
Another result of which is a breakdown in customer service from CF Clinics. When their own clients can no longer know each, how can we individually know if we're receiving bad / adequate / good care without the context of our immediate peers??
It wasn't until my late 20's when on a drug trial that I again had contact with other CFers. That was a good year.
But that was 10 years ago, and once again, I don't know anyone else with CF.
Someday, maybe sooner, maybe not in my lifetime, mental health issues and the lack of accessible community for CF patients will outweigh the risk of cross-contamination.
I too, would welcome discourse on CF issues, and have lots of experience to share with others.
randomgirl
New member
Hey Jellybaby, there are quite a few Aileen Henderson's on facebook 
. But my facebook is www.facebook.com/pattydow
. But my facebook is www.facebook.com/pattydowCF friends are often awesome. I had a bunch growing up, we'd have CF events at the children's hospital. I even dated one I met in the hospital. Most (maybe all) have passed, that I know of.
I've made some new friends a few years ago at the CFRI adult retreat, I highly recommend it. Though it could get crowded soon. I can't go anymore b/c I have MRSA. It was a life-changing experience and I made at least 1 close friend there. We have "skype dates" sometimes. Facebook has a pretty good community of adult CFer's, many of which met through CFRI.
I've made some new friends a few years ago at the CFRI adult retreat, I highly recommend it. Though it could get crowded soon. I can't go anymore b/c I have MRSA. It was a life-changing experience and I made at least 1 close friend there. We have "skype dates" sometimes. Facebook has a pretty good community of adult CFer's, many of which met through CFRI.
iefisherman
New member
I think anyone on this site is a friend (and i'm very anti-social). There are a few different personalities out there, but we come to this site to find people like us. Don't be afraid to just message people. Everyone here is here for the same reason.
tbourcier22
New member
Hello everyone, I am new to this forum. Also would like some friends with CF. Anyone wanting to add me on Facebook just private message me and I will send you the address.
heathercrittendon
New member
Hi I am also new to this site. I am a mom of a 16 yr old daughter. She has ddf508, mostly weight issues. She is 5'2, 94 lbs. She has a g tube and takes 2-3k calories at night. She also does hyper tonic, pulmozyme, albuterol and the vest. Her dr says she has very mild chrons, but she never has any symptoms and hasn't taken the pentasa for a while. She has maintained her weight and height and fev of 72-4 for the past yr without any hospitalizations. They want her to be at 100lbs. I feel like her GI dr always wants to do unnessecary tests. Now he is saying her lack of weight gain could be inflammation in the intestines, and want another colonoscopy. I think that is not needed and she could just eat breakfast before school and a better lunch after school. She currently just snacks at school.What are you opinions?
tbourcier22
New member
heathercrittendon,
I was in her position once. When I graduated high school, I was also under 100 lbs. I did not have the luxury of a higher FEV1 as your daughter does (mine was, and has since been, right around 30-35). The idea of a feeding tube is not only to gain the weight but also to maintain a decent level of nutrients that are vital for an individual with CF. I had a feeding tube for over 15 years (age 2-17). The deciding factor of taking my feeding tube out was that it was a J tube and was starting to form a fistula (a tract from the opening of the bowel to the opening of the skin). Stomach acid was starting to leak out and cause extensive skin irritation. I confronted my concerned physician into allowing me to try life without a feeding tube. Often while on my night time feeding, I would wake up without an appetite. At this point in my life, I was only increasing my weight by a pound or less a year. With my doctor's consent, I was given one year to maintain and increase my weight while conducting a calorie count every other month. I pushed myself extremely hard to gain weight. I was on a diet that exceeded 10,000 calories a day. I found night time snacks that contained high protein, calorie, and high fat (peanut butter, cream cheese, pizza rolls, etc) that I would eat every night before bed. I was able to gain 5 pounds the first year and have been doing very well weight wise since then. I am currently around 150 lbs which puts me at 25% BMI. Correct me if I am wrong, but I believe the doctors like Cf patients around 26% BMI. The extra weight and nutrients help us battle infections and other CF related complications. It took me a long time to get into the mind set that I had to push myself to each. Even if I was not hungry, I had to force it. If your daughter would like to discuss anything, my email is always open. She is at a hard age where she may be embarrassed to take her enzymes in front of friends or something like that as well. It is tough. Any other questions let me know. Hope this helps
I was in her position once. When I graduated high school, I was also under 100 lbs. I did not have the luxury of a higher FEV1 as your daughter does (mine was, and has since been, right around 30-35). The idea of a feeding tube is not only to gain the weight but also to maintain a decent level of nutrients that are vital for an individual with CF. I had a feeding tube for over 15 years (age 2-17). The deciding factor of taking my feeding tube out was that it was a J tube and was starting to form a fistula (a tract from the opening of the bowel to the opening of the skin). Stomach acid was starting to leak out and cause extensive skin irritation. I confronted my concerned physician into allowing me to try life without a feeding tube. Often while on my night time feeding, I would wake up without an appetite. At this point in my life, I was only increasing my weight by a pound or less a year. With my doctor's consent, I was given one year to maintain and increase my weight while conducting a calorie count every other month. I pushed myself extremely hard to gain weight. I was on a diet that exceeded 10,000 calories a day. I found night time snacks that contained high protein, calorie, and high fat (peanut butter, cream cheese, pizza rolls, etc) that I would eat every night before bed. I was able to gain 5 pounds the first year and have been doing very well weight wise since then. I am currently around 150 lbs which puts me at 25% BMI. Correct me if I am wrong, but I believe the doctors like Cf patients around 26% BMI. The extra weight and nutrients help us battle infections and other CF related complications. It took me a long time to get into the mind set that I had to push myself to each. Even if I was not hungry, I had to force it. If your daughter would like to discuss anything, my email is always open. She is at a hard age where she may be embarrassed to take her enzymes in front of friends or something like that as well. It is tough. Any other questions let me know. Hope this helps