Coping with CF

[anonymous]

Hello!

I am a social worker with a special interest in working with persons affected by CF. I had/have a number of friends with CF and have a keen interest in conducting research in how people cope with this illness. I have just completed a study on parent's experience of their child with CF's transition to school. Wondering what people feel are the most important areas to explore? Relationships? Transition from pediatric care to adult care? Choice to have more children? Disclosure? I look forward to hearing from you and receiving your valuable input. Thanks!

Karen

 

[anonymous]

I think it all depends on the person in terms of their age, state of health, and life situation. Are you planning on working in a pediatric hospital or adult care? This might help people answer you better.
When reading the postings you will see that parents look at things differently than patients, and that things change from day to day depending on age and health.

 

[anonymous]

Karen, if you want to know how people cope with CF, read my posts...
Right now I dunno how to cope with it.

Matt
27 w/cf

 

[ButtonNO1]

Karen hiya my name is Jo i have CF and it has never really affected me to much i have had a fairly normal life apart from school . but the older i get the more trouble i seem to have i get very depressed when i am very ill but seem to pick myself up after a couple of days . I have a very good and close relationship with my parents My mum is fantastic and is my rock when i am very ill i can talk to her about all my worries . MY dad takes time off of work to take me to all my hospital appointments as the nearest cf specialist place is an hour away . my brother i think gets very jealous cos i do not work (not my choice though) and i get alot of attention from my parents . my grandparents i do not have a good relationship with them i have alot of resentment towards them as they refused to look after me when i was a baby cos they were scared of my illness and my mum had to quit her job . my friends are fantastic and very supportive to always visit me when i go in hospital and bring me lots of presents . if there is anything else you want to know just post it on here and i will be happy to let you know things as i am on here everyday (not all day though LOL) from JO 20 yrs old w/cf from uk

 

[anonymous]

Karen
As a parent of a child/adult with CF the transition from pediatric clinic to adult clinic is a scarely one. Not only do we/I get nervous about seeing a whole new staff of Drs', social workers, etc....., we/I are to let our child/adult start their life as an adult and take on the responsibility themselves, and I speak only for myself, THIS IS THE SCARIEST!!!! You/I only hope that what we have trained and taught and what these children/adults, have learned themselves, THAT IS STAYS WITH THEM, so that they may care for themselves properly.
I hope that has helped in a little way!
Anonymous

 

[anonymous]

Hi Karen - I was diagnosed at the age of 11, am now 38. I am <b>extremely lucky</b> in that I have normal lung function, but I am laden with sinus and intestinal troubles that can hamper my everyday activities. My biggest challenge with coping came when I was diagnosed with CFRD 5 years ago -- became very depressed and added Celexa to my regimen (which has been a HUGE help).<br><br>
My strength comes from my family, my friends, my spirituality and believe it or not, my job. I would love to talk more if it would be of any additional assistance to your study.<br>
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Joni 38 w/cf