 MAILBAG
ARGENTINIAN
THANKS
Dear Editor
I'm a doctor here in Argentina. I regularly receive the IACFA
Newsletter for which I am thankful. I'm head of a Pulmonology
Section in our Children's Hospital with approximately 55 CF
patients.
I only wanted to thank you for your help and wish you all
a happy New Year.
Eduardo Lentini
Head Pulmonary and C.F. Section
Children's Hospital
Mendoza
Argentina
Editor's Response:
Dear Eduardo
Thank you so much for your kind words. May 2002 be a good
year for you,
your colleagues and patients.
SEX RESPONSE
Dear Editor
Thanks for your article on "Sex and CF" in Issue
60. Sex remains a somewhat taboo subject and therefore more
difficult to discuss than many other CF topics. Your light
touch and straightforward approach have resulted in an excellent,
if rare, opportunity to air these important issues.
Ron Trueworthy
Arlington, Virginia
USA
ron@cystic-l.org
http://cystic-l.org
HARD DECISIONS FOR PARENT WITH CF
Dear Editor
My name is Ingela Ahlm, I am a 34-year old woman suffering
from Cystic Fibrosis and over the past 2 years my condition
has progressively deteriorated. In 1998, I gave birth to our
much longed for son Andreas (test tube fertilisation) and
when he started playschool both he and I caught a bad infection.
Andreas recovered, but since then I have had recurring lung
infections. Nebcin(a), which is the only medicine I tolerate,
hasn't helped and the pulmonary values have continuously decreased.
My FEV1 value is 25% and FVC 35%.
I suffered from very difficult muscle conditions and examinations
have showed that I have an overall infection in my body that,
among other things, have caused muscle atrophy in the legs
causing pain and weakness, even when I am not doing much.
The infection probably stems from the lungs and according
to my doctor a lung transplant is now my only option. I have
recently been evaluated for a transplant and everybody is
now awaiting my decision. I am finding it very hard to decide!
I was very ill during the summer and then felt it was more
important to undergo the evaluation and maybe go on the waiting
list.
My condition stabilised during autumn and I have good and
bad days. As long as I have good days and can cope with every
day chores, I am hesitant and can't face making such a huge
decision as to whether or not to go through with the transplant.
I keep thinking about my husband and my son who I want to
be able to be with for many years to come. I don't want to
risk undergoing such a huge operation, the after effects and
a possible rejection, if I don't have to. On the other hand,
I don't want to hold off for too long either, since the waiting
time for organs is long and I might run out of time.
There is nobody in Sweden suffering from CF who has children
and who has undergone a transplant. I wonder if there are
any IACFA readers out there who have experienced what I am
going through now? What were your thoughts when you had to
make the decision? How was the time after the transplant -
did you get infections from your children and did you have
to be isolated from them?
I have so many questions and thoughts and I am frightened
and can't make up my mind, it is so very difficult! Maybe
somebody with the same experience could get in touch with
me? It would make me very happy to talk to and to exchange
experiences with somebody who has already been through this.
Please get in touch as soon as possible! Time is slipping
away…
Ingela Ahlm,
Strindbergs stig 4
245 32 Staffanstorp
Sweden
ib.ahlm@telia.com
PAIN RESPONSE
Dear Editor
I am an adult with CF (39 years) from Australia, and have
just read the latest IACFA Newsletter (Double Edition Volume
One 2001), which I found very interesting.
The article that I found really exciting was the one PAIN
A GROWING CHALLENGE IN CF CARE. This article was spot-on to
what I go through here in Australia in getting doctors to
listen to me and understand the amount of pain that I can
suffer at times.
Sue Parker
Australia
nickysue2@yahoo.com.au
SIDE EFFECTS?
Dear Editor
I just picked up a copy of the Newsletter at my daughter's
clinic. My daughter Sarah is 20 years old and was diagnosed
at the age of 3. She has been very healthy through the years.
Three years ago while taking Cipro for a lung infection she
started experiencing a 'foggy head' feeling. She feels this
way constantly - it never goes away. However, she is not dizzy.
Although we have seen many doctors and had many tests, no
one has been able to give us an answer. Her brain tests and
inner ear are normal, and although her sinuses are congested,
they are not given as an explanation. In fact the doctors
indicate that they have never heard of these symptoms before.
We are told that if Cipro were the cause that the symptoms
would have gone away once Sarah was taken off of this medication.
Perhaps one of your readers will have some more information
that may be of help.
Sherry A Casebier
Kentucky
USA
Editor's Note: If you have or are having a similar experience,
or can shed light on Sarah's symptoms, please write to Sherry
via our email address: editor@cfww.org
and we will pass this onto her.
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here]
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