Hi Gina,
My daughter had already had her tx at age 16 at Children's in Los Angeles, but
she did still go to Children's in Madera CF clinic when L A needed specific
blood work done, or for the CF clinic to oversee Tara if certain things were
going on....they would be LA's eyes and ears. This combination worked out well
and my daughter didn't have to make the three hour trip for something that
wasn't an emergency. But, once she was of age....Children's doors were no longer
open for her........nor was she referred to anyone in the local area who could
follow her.

Another friend, who's CF was critical became of age and was no longer seen by
the doctors who knew her and her care the best, who took care of her all her
life......instead she had to go somewhere else. Needless to say.......within
months she died. Would she have died so soon even if she didn't transition to a
center who didn't know her? Maybe.....but all the stress she was put through on
top of it was unnecessary. To have to go to someone new, who doesn't know your
history, your specifics and especially when your health is in critical
condition.

My opinion only....but what I think needs to happen is when the CF child is 17
or 18, I think they should gradually start seeing (be referred would help) an
adult CF center...but at the same time still be seen as well by the Pediatric CF
center and ease them into the Adult CF care. All (Pediatric CF center, Adult CF
center and the patient work together) in making the transition easier. This way
the now adult CF patient is not going in unsure and untrusting of the Adult CF
center who will begin to take over the full time CF care for this person. It
seems the CF child is cared for now until they become an adult age, then once of
age.....we can no longer see you....you have to go to an adult CF center.
Leaving them unsure and scared. Change is hard....and when you are not prepared
it makes it even worse.

Love & Hugs
Cloyce
mom of Tara 24 w/cf, tx'd 5-27-99, diabetes

----- Original Message -----
From: ginamackintosh
To: cysticfibrosissupport@yahoogroups.com
Sent: Friday, January 12, 2007 1:22 PM
Subject: [Cystic Fibrosis Support] Grad Student looking for
researchparticipant(s)


My name is Gina Mackintosh and I am a Child Life graduate student at
Mills College in Oakland, CA. I am presently engaging in a research
study about transitioning from pediatric to adult-oriented healthcare,
and am seeking participants. The ideal candidate will have made the
transition and will be comfortable discussing the challenges,
difficulties, benefits, etc., that he or she experienced during and as
a result of the transition. Participation will involve 2-3 interviews.
All information will be kept confidential. Please contact me via email
if you would like more information or are interested in participating.
Thank you.





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