Dear Cloyce,
I am a member of the CF support group, in much the same way you are. My son
Tristan is 18mo. old w/ CF. From the day of our son's diagnosis, my husband and
I vowed to do whatever we had to, to help support each other and other parents
like us. We have recently found ourselves stuck in a situation with our son's
CF care, and after reading this forward from the CF support group, I was hoping
that we could get your words of wisdom on our situation. I recently have had an
issue with the care (or perhaps I should say the facility) that my son is
currently getting, and my husband and I have decided to explore other options.
Since my son's diagnosis (inutero) we have been seeing the staff at a
"local" CF accredited children's hospital. We have had a great connection with
most of the staff at our lung center, but have had some minor issues with the
cleanliness (or lack there of) at the facility. For a "children's hospital",
they seem to not be very child oriented. I don't know at what age your daughter
was diagnosed, or if they had infant pft's when she was a baby, but this is a
test that we chose to have done to our son. We knew that at his age pft's
weren't a necessary procedure, but we wanted to at least establish a base line
for his lung function, and hopefully detect any problems now, so we could avoid
them later. Unfortunately, Tristan's first pft showed signs of a narrowing
airway, which he was put on a new med, in hopes to treat the asthma like
condition. A few months later we had another pft which showed no significant
change, and the med. was increased. Recently we had another pft scheduled,
which was hopefully going to tell us one of 2 things. The med., at a higher
dose was effective in reducing the narrowing airways, or, that the med., at a
higher dose was ineffective, in which case they would take him off of this an
try a new med. Whatever the results, my husband & I were eager and hopeful that
there would be some positive change, but in the back of our heads reminded
ourselves that this med. may have been doing no good for the past 12 months.
Like I said earlier, our issue is more with the facility, than the staff
that we deal with. On the day of the test, my husband and I did everything that
we had been told, which included sleep and food depriving Tristan. We have a
really hard time with this, since Tristan has had some issues with his weight,
and we are normally trying stuff the kid with food. Our test was supposed to
start by 9:30am, and we needed to arrive at the hospital, at lest 1 hour prior
to the test. When we arrived on the floor where the pft would be taking place,
it was extremely overbooked, as usual. The small waiting area that there is, is
nothing but a closet stuffed with chairs. We were soon whisked into a "
procedure room" upon our arrival, because they didn't want Tristan to be exposed
to any of the other kids germs. About a half hour after the pft was supposed to
start Tristan became restless. At this point we had been in the room for 1 1/2
hours with no crib or even a bed that we could lay him down on. Luckily we had
brought many of his toys from home, but at this point, he had grown tired of all
of them. I had to try to keep him awake until the test started, so I took him
for a walk down the hall, where he proceeded to throw a fit and bumped his head
on the floor. Now, I will admit that it sounded bad when he threw himself on
the ground, but he really didn't bump his head very hard. There was no bump,
bruise, or even a red mark, and after 2 dr's examined him, the dr cancelled the
test ( that he was 45 min. late for). I have a medical license, and I can
appreciate the fact that they were concerned with sedation after he bumped his
head, but what angered us was that we were given no options. Tristan should
also have had a throat culture that day, which on recent past visits, have not
been so great. Nothing was done, and we were sent home with a hungry, over
tired baby. The straw that broke the camels back was that upon leaving the
hospital, I was informed that all the CF physicians are in a meeting until
10:00am, but had us scheduled for a 9:30 pft. For the first 2 pft's my husband
and I figured that, you know, doctors are important, and probably had an
emergency. That's why they are late. But to find out that they were discussing
charts in a meeting when they were supposed to be taking care of your kid was a
bit frustrating to us. To top it all off, we were given no option as to when
the test would be scheduled, and so both me and my husband had to take off of
work that day, costing us hundreds of dollars. We have had to turn our lives
upside down, working hard now, so we can be prepared when things maybe aren't
going so good, and now we can't help but feel like the day was a total waste.
Now we have been questioning wether or not to "change venues". The lung center
we have been going to is about 40 minutes from our house, and there is another
one that is about 1/2hr. from us. The distance is my biggest obstacle at this
point. I have spoken to other parents that go to the hospital that we are
considering, and have heard only good things. I also have had experiences with
their nic unit when my nephwe was born, and was really happy with how they took
care of him. My sister also has a child with a serious health problem, and has
been being treated at the same hospital that my son goes to. Come to find out,
she has had similar problems with the hospital, and this procedure floor in
particular. I don't know if we have been overreacting about the whole thing or
what, but the fact remains that we have no choice but to be involved with dr's.
There are a lot of people on Tristan's team that we would hate to lose,but we
don't really feel like they are working in the best way possible. We have set
up an appointment with the "possible" new venue, but in the mean time, don't
want to burn any bridges with the current providers. I would really appreciate
any words of wisdom or advise you might have. Thank you for your time.

Debbie

----- Original Message -----
From: Cloyce Jones
To: cysticfibrosissupport@yahoogroups.com
Sent: Thursday, January 18, 2007 12:47 PM
Subject: [Cystic Fibrosis Support] Re:Grad Student looking for
researchparticipant(s)


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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