Re: Re: overage of cf patients

[Guest guest]

One thing I do notice on every cystic fibrosis list is that there are more early

diagnoses (and therefore more early and better care), more generations, and

more of us past sixty! Definitely an overage! Now, if we could only prevail

upon the Congress to give NIH (in the usa) a lot more money, and do the same

with parliament in the UK, and the same in Denmark, I just think we might have

within our sights the hope of a cure--well that is my New Year hope, at any

rate,

and Sue's comment about the " overage " of us made me realise that when I was

young, there were no multiple generations with cf, no parents, aunts, uncles,

even grandparents, step-parents, foster parents--well you get the picture! We

now have different generations surviving--along with the losses. And amazing

older patients and stalwart kids are getting to know of one another, which I

think

is just a very good thing--if we MUST endure this menace! (and I have had no

more coffee since breakfast, honest, gang!), Love to us all and thank you, Sue

for your thoughts on the matter. n

Re: Re: Seeing file on son fr: dr

I totally understand where you are coming from. We had that same problem,

felt neglected, they were too busy, etc. We changed clinics. The new clinic

is

further away but so far well worth the change.

I don't blame our old cf doctor. The one we liked to see (they had 2) was

awesome. I swear the man could cure cf if he just had the time to sit down

and

think about it. You know what I am saying. He was so busy it was next to

impossible to get in touch with him, let alone an appointment.

But do you know that I have found that most clinics are like that. There

must be a shortage of CF doctors. Or else there is an overage of CF patients.

Hey, you know what, maybe the fact that cfers are living longer has a lot to

do

with this.

Anyway, Im not going to drag on and on like I usually do.

Mainly I just wanted you to know that I understand where you are coming from.

And, I requested a copy of my childs medical records to be sent from the old

clinic and hospital to the new one, a year ago in January. Guess what, they

still don't have them. Unless they got them in the last 2 weeks. I can't

imagine what would happen if I asked to see a copy. Probably would get to see

them in say 3 years, maybe.

Anyway, you are not alone in this. Wishing you well in this as I totally

understand how you feel. I have been there before.

Good luck!!!!!

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama