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Evening with the Eagles,
November 17, 2003
We would like to thank
our friend, Janet, for providing a phenomenal
speech to inspire and educate. Special thanks to our family and friends who supported us by attending and
bidding. This event raised $145,500 (net) for the CF Foundation!
Janet's Speech
Click Here to Obtain a Print Friendly Version
(Must Have Adobe Acrobat Reader)
Good evening and thank you
all for coming tonight. I’d like to thank the Cystic Fibrosis
Foundation for the opportunity to share my story.
Several months ago while I was sitting in my doctor’s office waiting
for my appointment I happened to pick up and read the CF newsletter
called “Commitment.” When I finished it I thought “What could I ever do
to help raise money to find a cure for CF”? Two days later I received
a phone call asking if I would be the guest speaker at tonight’s event.
So here I am!
Typically people think of CF as a “children’s disease,” but after
tonight you will realize that you can never be too old to be diagnosed
with CF. For now, because of the many wonderful people such as you who
donate their time, talent and money to fund research for CF, the average
life expectancy for children with CF is 32 years. But we still have far
to go, because too many young people are dying before their 21st
birthday and that’s why we’re here tonight.
I
don’t want to bore you with every little detail of my past but if after
I’m done you have some questions you would like me to answer please feel
free to approach me later or send me an e-mail. My e-mail address is
VisaJanet@___.com. Yes, that’s Visa, like the
credit card. Actually, if there’s a perk to having CF for me it’s
this. It’s when that monthly Visa bill arrives. While my husband is
fretting over it, I give a few good (cough here) and never is a word
mentioned about the balance. (Pause) Although some months I have to
cough more than others.
I’ll start by answering a question that probably most of you have on
your minds. I’m 45 years old. At 19, I had half of my left lung removed
because of bronchiectasis. That’s the lung condition that all CF
patients have. But at that time, they did not think I had CF. They just
thought it was an unexplainable case of localized bronchiectasis. I’ve
always had a cough growing up but that year I had several episodes of
bleeding from my lung. After all the usual tests, including three sweat
tests within the normal range, it was determined that I was otherwise
healthy. The surgery went well and I continued my education to become
an x-ray technologist and then married my high school sweetheart, Rich.
Over the next few years, both my cough and moderate bleeding returned.
Further tests showed that I had developed more bronchiectasis in what
was left of my left lung. This was treated with oral antibiotics on and
off for the next 17 years. During that time we had three healthy
children all of whom are CF carriers.
About 8 years ago, just after moving to Philadelphia, I began having
larger episodes of bleeding and frequent lung infections. Because of
the bronchiectasis, my last doctor recommended that I go to a CF
specialist since he would be the best to treat this type of condition.
It was at that time, at the age of 37, that they seriously tested me for
CF. The genetic test at that time showed that I carried one gene, which
meant I was a carrier. My sputum cultures on the other hand revealed
that I had some of the more serious infections in my lungs normally
associated with CF. These infections required long-term multiple
antibiotics and nebulizer treatments. Did I have CF? They couldn’t say
yes for sure. I didn’t fit the usual CF pattern. My insurance forms
read bronchiectasis. These bleeding episodes didn’t stop. I was in and
out on the hospital many times and on 5 different occasions I had
pulmonary embolizations preformed hoping to stop the bleeding. When
these procedures weren’t successful I had no choice but to have the rest
of my left lung out.
I had my surgery preformed
at HUP on 7-14-99. They did an outstanding job and within 5 weeks I was
on our yearly family vacation to Lake George, New York. One and a half
years after surgery I changed doctors to the adult CF department at
Presbyterian Medical Center. I would like to say thank you to all the
wonderful doctors, nurses and staff who treat CF across this country,
but especially to the ones that I have had the good fortune to encounter
at Presbyterian Medical Center. Going for my appointment is like going
to a social event. Yes they examine me, perform tests, and treat me but
in between it all they ask about my family and interests and then they
share theirs. I consider them friends who truly care about me and that
makes going for my checkups pleasurable.
So now, at 42 I was being retested for CF and the latest genetic test
discovered my second gene. My sputum culture showed that I developed
another serious infection in my lung but an 18 month course of
antibiotics cleared this up. Since my surgery, which was 4 years ago, I
have been on one 18 month course of antibiotics for a serious infection
and 3 very short term courses of antibiotics for minor infections. I
speed walk every morning, use an inhaler twice a day and the nebulizer
at night. I’ve also recently added the vest therapy to my routine. My
energy and quality of life are excellent. I never expected to feel so
well after my last surgery. But the story doesn’t end there.
You see I am one of five children. I have an older brother George who
is now 49 years old. Unlike me, my brother was a born athlete. Growing
up, while other little boys slept with their teddy bear, George slept
with a basketball. Well, actually he slept with his basketball and his
teddy bear. He loved sports. He played basketball in high school and
college. Up until the age of 34 my brother never exhibited any signs of
cystic fibrosis. Because of a bad knee injury he went out on
disability from the NYC police force and then moved to Florida.
For the next 12 years, from age 34-46, he suffered from what his
doctors diagnosed as severe allergies, asthma and sinusitis. When
genetic tests found my second gene I called George and begged him to be
tested. My brother said to me “Janet, Whoa! I couldn’t possible have
what you have -- your much sicker than I am. My brother’s
condition only got worse. He was eventually tested and it showed that
he too had the same CF genes that I do.
He is now being properly treated at an adult CF center. Recently
George had a portion of his right lung removed due to a micro resistant
infection in his lungs. He really suffered for over two years taking
multiple antibiotics and nebulizer treatments to clear this up. This
type of deadly infection does not affect a healthy person because they
have the defenses to fight these germs off. In fact these bacteria live
all around us in the dirt, air and in the water. But for a person with
CF, these germs find a perfect, fertile growing medium in our lungs that
make the bacteria thrive. And that perfect medium is mucus. Mucus that
our bodies produce too much of. Mucus that we try to beat out of us
daily through chest therapy, exercise and vest treatments. Mucus that
allows these deadly germs to flourish.
I
asked my doctor if I could go to my brother to be with him for his
surgery. After all who would know better than me what he was going
through? She said, “Even if you were gowned and masked and stood at
either end of a football field, I couldn’t let you go.” Obviously she
was trying to impact on me that with only one lung, I couldn’t take
chances.
This infection, and even lesser types, have such a great impact on all
CF’ers that individuals with active infections may not be anywhere near
another CF person. If you want to know the most difficult part of having
CF for me it’s that when George needed me the most I couldn’t be there
for him. Sure I called at least once a day but not being able to go to
him, sit with him and hold his hand through this difficult time-- that
was and still is, most painful. The sad truth is that George and I will
never be able to hug or kiss each other again--not at holidays,
weddings, baptisms, or funerals—not ever.
In fact all CF’ers must maintain at least a three-foot distance from
each other at all times and try not to be in confined spaces. Several
months ago I met Gianna, a sweet and feisty little 3 year old with CF.
Knowing her, her parents and her extended family has been a real
blessing in my life. They helped me understand a great deal more about
this disease. I look at her, and I want her to have everything life has
to offer, and then some. She was born 10 weeks early and spent 3 ½
months in the intensive care unit. Gia has faced many challenges
already in her life and has many more ahead of her. She regularly does
her nebulizers and vest therapy without any complaints, as long as her
favorite videos are on. Emotionally I feel a very close bond to Gia.
I’ve come to love her but unfortunately I will never be able to
experience that physical bond with her. The closest I have come to
showing affection is by blowing her a kiss from afar. When I see others
take her hand, pick her up and kiss her I look on with envy.
So how has finally being diagnosed with CF affected my life? My mother
always taught me to be grateful for what I have. So what do I have? I
have my parents, my brothers and sisters, my husband, my children, my
old friends and my new friends. These are people who love and support
me and together we always look for the rainbow. And above all that I
have my faith in God. A faith that comforts me and lets me know that I
never walk alone. Every breath I take I feel Him with me. I trust in
His will for my life and I know that whatever difficulties I go through
He will always bring a greater good out of them. One of those greater
goods in being with you here tonight.
Right now I ask you to take a moment, close your eyes and picture
someone you love. Now think about what it would be like to never be
able to give that loved one a hug or a kiss ever again because you would
never want to be the reason that they contacted a infection. Possibly
even a deadly infection that would compromise their health. I do not
know what the future holds for George or me, well maybe I do know, but I
choose not to think about it. I‘d rather think about the very real
possibility of finding a cure for CF in Gia’s lifetime. I ask tonight
that you be as generous as you can possibly be because you can make
happen for Gia and others like her to be able to enjoy all that life has
to offer and then some. Without you this dream will never become a
reality.
Thank you
And by the way - I hear that they are accepting Visa tonight! Cough
Cough
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