Hi Deb,
It's a shame that the pulmonology dept. put you, your husband and son through
all of that.....to top it off it was all for nothing! You and your husband lost
wages, your little guy went through pain and suffering....and for what???? Had
they of started the procedure when scheduled or even close to it all the rest
never would have happened. Why did they need him there an hour earlier if they
didn't do anything in that time? And when they canceled this day's pft's, why
didn't they reschedule him right away for another day? Is there any way you can
talk to the head of this dept? Or even write a letter voicing your concerns and
not being happy with how they schedule tests, and expect you to be there an hour
ahead of scheduled time knowing that they wouldn't be there at that time
themselves. No, your right....you don't want to burn bridges...but, you would
like to know that as a concerned parent something is being done to make the
situation better for your son as well as others. Your pulmonology dept is
seperate from your cf clinic right? Maybe the cf doctors can put the word in
*stat* or something to move them along :-) No, they didn't have the pft's for
babies when my daughter was young.....but I think it's great that it's an option
now. Tara was 6 years old I believe when she had her first pft. It was at about
56% then.....by age 15 1/2 her pft's were at 36% and that's when she was listed
for transplant. The one thing I learned about pft's is it is a gauge.....at
least you can find out what the baseline is....and you can tell when something
is up when you see a drop in pft's....and to know when all has been done that
can be done and the pft's have not improved.....that this is the new baseline
for that child. I know of many who do not consider pft's very important as long
as they feel good.......for us, pft's are very important. My daughter is soon to
be 8 yrs post-tx. Her pft's about 6 months ago was like 88% at a visit......3
months later at her next visit her pft's had dropped to about 84%. With us
knowing that nothing out of the norm was going on....we knew there had to be a
reason for that much of a drop and we questioned it. It was decided that my
daughter would have her first bronch ever just to see if there was something
going on. Sure enough, she was having her first bout of rejection....we just
happened to catch it before the symptoms appeared. And that's what it's about
with CF......trying to stay ahead of it. I do hope things improve at the
pulmonology dept. CF visits are trying enough without having to deal with added
stress that isn't necessary.
Wishing you the best!
Love & Hugs
Cloyce
mom of Tara 24 w/cf, tx'd 5-27-99, diabetes
author of:Inner Strength, One Family's Experience with Cystic Fibrosis
www.trafford.com/robots/04-0971.html





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