Transition

[anonymous]

Hi,
I'm really sorry if I soud like another school-project idiot, but i'm a student nurse and i'm doing an assignment for college on health promotion among cystic fibrosis sufferers aged 13-19 and i would be really grateful if you could answer some of my questions.
My assignment is based on the assumption that there are a lot less facilities and resources for young adults than there are for children (this is true in the UK but please correct me if i'm wrong. i know a 13-year-old with cf and i know that she'd definately benifit from some extra information because she doesn't believe that people with cf live past the age of 18).
I would like to know about your personal experiences of transitioning from the pediatric clinic into the adult clinic. Did you prefer the treatment you received in the adult clinic? Were you able to become more independant from your parents?
It would also help me if you could tell me a bit about the level of support you received as a teenager or young adult - emotional support, physical support, social support...that kind of thing.
If there was anything you wish you'd known earlier, about how your symptoms would change as you got older, or how to keep your health at an optimum level, i'd like you to tell me.
One final thing - (sorry to be vague and irritating) - if there is anything you can tell me about the kind of care plan or health promotion plan you received or are following, it would help me a lot.

Thank you so much for reading this and taking the time to answer,

Chloe

 

[anonymous]

wel i can answer for a few of these....

im 19 and my parents still come to me when i go to clinic i know others a lot older than me also bring their mum or dad along so as far as being indipendant i have yet to go there!! But to be honest i dont mind my parents being there anyway(they remember what tablets and stuff im on i aint got a clue!!).
In a way yes i do prefer the treatment i get in the adult clinic, (hope you dont want justification!!)
Support - dont receive any!!
I wish i'd known the life expectancy was limited from an EARLIER age as only in the past few years i have been more aware of my health as far as keeping fit. If i'd have known younger i think i would have started to do something about my fittness a LOT earlier. in the sense of exercising regulaly to keep my lungs as healthy as i can.

Hope this helps,

 

[shamrock]

I would have to say i agree a lot with the last poster. Im 17 and my mom takes me to clinic. I dont think i'd like going in on my own but I think ~Id feel the same way even if i was 50!
I also wish I'd known about the damage done if you don't do your treatments. I only really found out in the last year what can happen.
Im a student and also recieve disability allowance.

 

[Mockingbird]

Ha, ha. You don't sound like a school-project idiot. You're one of the good ones. <img src="i/expressions/rose.gif" border="0">
I'm 22, though, so i can't help. =-)

Jarod

 

[shamrock]

Oh I forgot to add, I didnt realise that each chest infection I got did me damge. I always thought they were another chest infection. If I had realised this even when my pfts were at 60% i would have worked real hard to maintain it. Thats one of my regrets-big time

 

[anonymous]

A few answers to you questions. When I was at the University of Washington CF clinic in Seattle wasington they had a CF "team" that I was seen by until I was 20. It was suppose to be only 18 and then I should go to an adult clinic but I was really upset about it so I fought to stay. The CF team consisted of my doctor, a team of nurses, laboratory personnel, my dietician, respiratory team, Social worker and counselor/psychologist. Even though the appointments were long because you saw all those people I just listed in one visit, you felt like you got a complete evaluation. When I transtitioned to the adult CF clinic I was very upset that a lot of the doctors didn't know how to answer my questions about Adult issues (marriage, reproduction, secondary education issues...) and I just saw a doctor. I had to come back another day to do the respiratory, then another day to do the dietician evaluation, then a different day to go to the lab. by the time I am done, it's taken nearly a month to finish my 1 time a month visit. I know sometimes it isn't conducive to one's schedule to spend 4-5 hours in an appointment, but it would be nice if it were at least offered as an option for those of us that can make it work.

Since adults living longer and longer is a newer thing, doctors know less and less about what the future holds. I think inpart it has to do with the fact that it is just unchartered territory and not their fault. But there is also a lot of bad communication between doctors who are researching CF and those who are treating CF patients. All in all, I am currently very satisified with my adult CF care (I go to a military hospital so all the clinics I need-respiratory, nurse, doctor, lab, social worker... are avilable in one location) that I recieve, but when I first transitioned (I am 24 now) it was very difficult because I felt that although I am now an adult and need to be able to handle "my own" the support system that was avilable at the ped. clinic isn't avilable to adults.

I hope this has been of help to you and if you need anything else answered just ask, like someone else said, you certainly don't sound like you are the typical "research" person. Answering specific questions, which you more than posted is just fine. It's wonderful that student nurses, such as yourself care and want to make a difference. I hope you get the answers you are looking for!

 

[anonymous]

Also, you might want to copy and paste your post to the adult and families section. Many of us who post there arent too far removed from the pediatric clinic age group, you might find some adults who are willing to reflect back on how it was for them then, and how it is for them now. I think this is a really good thing you are researching.