You can find the full story at:
http://www3.nbnet.nb.ca/normap/cfinfertility.htm
My name is Stacy Bauer. I am a 30 year old woman with Cystic
Fibrosis. I would love to share my story with you. You may
use this however you wish and if you have additional
questions please feel free to contact me. I will warn
you that I am not a writer and tend to be long winded. I guess
I will start from the begining...
I remember when I was 6 and the doctor told me I only had a
few more years to live. I looked him right in the eyes and
told him that I would see him at his funeral. He died when
I was 21 and I didn't attend the funeral because
I was too busy living my life....
When I was 16 I met a young man who I fell in love with. I
nearly sabatoged the relationship by trying to break up with
him because I as afraid I would die before we were old enough
to be married. By this time my doctors were saying I might
live to be 21. He stuck with me and educated himself on CF,
even learned how to do my physical therapy. Once I
realized he was not going to be scared off, I again felt
the need to rush. I graduated high school at 17 and we were
married when I when I was 18. We moved away from our small town
to a larger city.
My health was doing well and I was away from the support
system that I had grown up with. I slipped quickly into
denial. I figured I had done so well that I was "over" CF,
like I had outgrown it. I didn't do any treatments or take
any medicine for nearly 4 years. It all came crashing down when
I was unable to become pregnant. We tried for 2 years,
had all the testing done and all they could find was that
because of having CF my cervical mucus was overly thick.
My general practitioner had done some reading and suggested
that I try taking robitussin every 4 hours to thin the mucus.
I checked with my CF Doc, he agreed.
IT WORKED. Within 2 months I was pregnant. During my
pregnancy I felt myself slowly getting a lung infection but
refused to tell my doctor because I didn't want to take anything
that would hurt my baby. Because of this after He was
born I was not able to nurse him because the medicine I had to
take for the lung infection would cross over to him through
breast milk. I sweated, waiting for him to be a month old
so I could have him tested for CF. His test was normal, no CF!
I was SO relieved!
I was sick on and off during the next 18 months. I was not
totally back to baseline when we decided to try again for a
second child. The pregnancy was almost a copy of the first one.
This time I had the additional complication of Bleeding throughout
the pregnancy. I had to quit working and "couch it" for almost
6 months. Again I was sick right after my second son was born. We
had him tested and breathed a sigh of relief when His was normal also.
I continued to fight being sick. Due to the inactivity and
blood loss during pregnancy, I was still very weak. I returned
to work when my son was only 6 weeks old. I grew increasingly
more tired and sicker. We decided to move back to our home
town. I was still sick and just over did it. When my youngest
son was only 4 months old I was hospitalized for the second
time in my life. I spent 6 weeks off work and was in and out
of the hospital. I thought I was better. I returned to work and
resumed my busy schedule. I worked in a group home
caring for handicapped individuals. 4 months later one of my
patients came down with pneumonia. I was sick at the same time.
I really worried that I may have given it to her. I was
hospitalized again, this time to have a PICC line inserted.
I was off work another 6 weeks. I felt so out of control
in my life. The lady in the home I worked in died of complications
from pneumonia. I struggeled with whether I should return
to that job. I returned.
I had 9 months of feeling well then I got pneumonia again.
I was torn between my need to lead a "normal" life, free from
all the daily therapy and drug regamines, and my deteriating
health. I was out of work for 9 weeks this time, in and
out of the hospital, recieving IV drugs through a PICC
line at home. I was so scared. All my life I thought if I
just fought hard enough it would all go away. I was the
sickest I had ever been. Half way through the 9 weeks I had
an allergic reaction to the drugs, then another one, then
another one. Finally, the picc line failed again. They determined
I was allergic to the plastic in it. I was well enough
that I was able to finish with a just a course of oral
anti-biotics and felt better. That has got to be the darkest
couple months of my life. When I finally got better I agreed
with my doctor to go on a daily antibiotic as a precautionary
measure and I do inhalation therapy when I am starting to feel
that I am getting sick.
I quit my job and became the manager at the local coffee
shop...my dream job, really. I loved my work. I went 10
months without so much as a cold. I was working about 50 hours
a week, plus caring for my sons, (now 2 and 4 years old).
I spent a few days in the hospital with a cold turned to bronchitis.
They wanted me to spend 3 weeks in the hospital.
I demanded options! I had a sub-cutanious port put under the
skin in my chest. I am so glad I had that done.
It allowed me to return to work 2 days later with a pump driven
IV for 2 weeks.
My husband is very supportive of me. He is strong for me when I am at my
weakest. I recently decided to quit my job stay home to take care of
our sons. I am enjoying a quieter life and I have never felt so
strong. I feel like I am finally controlling my life and my
health instead of being pulled in 5 directions. Of course,
the boys love having me around all the time too.
My Doctors think I am a canadate for the gene therapy drug
trials. I now have a normal life expectancy, provided I
continue to keep myself healthy. I am hoping that there
are more breakthroughs coming soon. I believe there will
be a cure and I must just fight to keep myself in good health
so that when it is found I can recieve the treatment and lead
a truely normal life. Until that time comes I will just share
my story and try to help others in my own small way
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