What year were you diagnosed?

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scarecrow

New member
I know there are older people in this group, I'm one of them. At least in this group I can say I'm pretty old. But I would like to hear the stories of what treatments and advice was given to you when you were first diagnosed.
I was diagnosed in 1963 after being in the hospital for the first time w/ pneumonia at 7 yrs. old. I was in an Oxygen tent for the first few days and got a shot in the butt of Penicillin every 4 hours I think. That was pretty much the extent of the treatment that they had then. They gave me a sweat test and then several more over the next few years. I have the scars to prove it.
The doctor told my parents-1) I should get as much exercise as I possibly could as often as I could.2) I should be on a very low fat diet ( enzymes were just starting. Not time release and awful tasting granules). 3) We should always consider anti-biotics as a last resort because if I became resistant to the few that there were at that time then there was very little more that could be done.
Other than always having to sleep w/ the foot of my bed raised up that was about all the regimine that I had as a kid and either it was pretty good advice or I was really lucky.
The Dr. did tell my parents that I would probably never live to be a teen ager but I guess I proved him wrong about that at least.
 
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imported_Momto2

New member
Dale, lets hear it for parents that wont give up on their kids!! I was diagnosed in 1971 at the age of 3 months, after being hospitalized much of that time with severe failure to thrive, multiple pneumonias, and pneumos. The docs told my parents to take me home and, I quote, "let me die". They didnt offer any treatment, any advice, nothing. We lived in Boston at the time and they had taken me to a premium hospital, so no excuse. I was a VERY sick puppy. My parents ignored the buttheads and took me to a doc in NYC whenever I got sick (she had been trained by Dorothy Anderson and was fabulous). To make a long story short, she ended up being like a grandmother to me, and we named our eldest daughter after her! She saved my life by immediately started me on CPT and nebulizer treatments twice a day when healthy, 4 times a day when sick. Enzymes, high fat diet, IV antibiotics when sick, vitamins, sinus treatment, be as active as possible, avoid dirty environmentss and sick people, completely clean cold room at night, ect etc. A very smart lady, who actually had me doing HTS in the 1980's.
 
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MiddleAgedLady

Guest
That's interesting! I was diagnosed in 1980 at age 26. I had been really sick in high school with pseudonomas pneumonia several times, and had one positive and one negative sweat test. I was told I wasn't "sick enough" to have CF. But I ended up getting the right treatment as they tried many that didn't help. Hospital, IV antibiotics, CPT and sent me home with nebulizer machines. So once I was diagnosed, the only change was the enzymes.
 
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JustDucky

New member
Diagnosed in 2005 at 33 yrs old after years of "asthmatic flare ups", pneumonias, digestive problems etc.. CF wasn't even on the radar and I was labelled a hypochondriac despite having very positive CXR's showing pneumonia and low O2 sats. Amazingly, my sputum was NEVER cultured during any of my many infections, they just threw antibiotics at me and sent me home after a week inpatient or so despite still being quite ill. CF was finally entertained when a very smart general practitioner cultured my sputum and it showed CF bugs...PA, B cep....I was sent for sweat testing, wound up being high borderline at 50 or so and had the genetics done which showed a mutation and a variant and so I got a dx and all of the CF treatments to boot. Pretty overwhelming at first, now it is as routine as brushing my teeth <img src="i/expressions/face-icon-small-smile.gif" border="0"> Still hanging in there, FEV is under 30, but I have other issues as well that contributes to a low FEV and on IV's frequently to maintain my health.

Jenn 40 wCF
 
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TonyaH

Guest
My son was diagnosed in 1998 at two months of age. The experience and CF history you all share here is exactly what I love about this website.
 
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LouLou

New member
I was diagnosed by this lady - amazing - http://www.nlm.nih.gov/changingthefaceofmedicine/physicians/biography_79.html
at St. Vincents Hospital
back in 1980 after multiple pneumonias and positive sweat tests. Even though doctors saw the results of a postive sweat test twice they said it couldn't be because I was fairing too well. My mom was feeding me breastmilk around the clock as a 2.5 year old every 3 hrs because it "was the only thing that didn't run right through me!" My parents were relieved to finally have a diagnosis as life had gotten unmanageable as I was so sick. Remember disposable diapers were invented in 1980. So largely my mom had dealt with my PI with cloth diapers and me being soiled up to my neck often after just a couple hours. They were different times!
 
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chrissyd

New member
I was dx'd in 1998, and I was 21. I was sick as a child but my mother was told I wasn't "sick enough" to have CF... I was going to the NIH in Bethesda for an unknown muscle disease and asked them to help me with my cough. They tested me and I got the call to confirm on my honeymoon.
 
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Brad

New member
I was diagnosed in 1965 at Children's Hospital in Washington DC. I was 8 yrs old.

I was not supposed to make it to 12 yrs.
 
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katethekid

Guest
My doctors tried to diagnose me with CF in 1989 (age 3), but with borderline sweat test it was difficult. I was officially diagnosed with positive sweat tests in 2003 (age 16) at Arnold Palmer Hospital.
 
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kiwilady

Member
Hello Dale
I was finally diagnosed in 1989, aged 37yrs. The original sweat test [when I was 19] was equivocal, despite having repetitive chest infections and nasal polyp surgeries.
I had an older sister and younger bro who were diagnosed in infancy, during the early 50's, when life expectancy wasn't at all positive.
Yes, I recall exercise being key to a longer life, it still is.
Cheers
Eileen.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 
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nocode

New member
Interesting topic.
I was born in 1983. Diagnosed in 1991 with Bronchiectasis (I had had no symptoms up till this age) and then spent the next 6 years in extremely poor health until I was finally diagnosed at 15 years old with CF.

As opposed to all the other posters here, I was advised to "not exercise at all!". Doctors thought that that I needed to spare my lungs from physical effort so I was told not to run, swim, etc. Awful right?
I was also on enzymes for a few years, as well as Pulmozyme and antibiotics, but a few years later my tests starting coming up negative for pancreatic insufficiency, so I stopped taking enzymes about 10 years ago and have been doing fine in that respect. I think I didn't have pancreatic insufficiency to begin with, otherwise it wouldn't have "disappeared".
Thankfully I know better about exercise now, too.
 
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Kristen

New member
I was diagnosed in 1977 when I was about six months old. I think I was VERY lucky. I had zero symptoms of CF. My grandmother was playing with me and nibbled on my toes and said to my mother, "Oh! She is so salty!" Either my grandmother or my mom had heard that a salty tasting baby might mean CF, so my mom asked my pediatrician to sweat test me. My pediatrician said, "There is NO WAY she has CF." But my mom insisted for peace of mind. And the test came back positive. Everyone was in shock. They took me to Boston for a second opinion, and it was the same thing, "There is NOW WAY she has CF" and then shock when the test came back positive.

My parents were told I would probably live about 16 years, and they put me on abx and enzymes. I remember having to eat applesauce with the enzyme pill mixed in before every meal. When I was teenager, the doctors learned about pancreatic sufficiency and I got to stop taking enzymes. I took daily dicloxacillin for years and years. I don't remember when I stopped it - I think sometime in my 20s. I didn't starts nebs until I started culturing PA in my mid 20s.
 
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Jet

Member
I was diagnosed at 2 in 1964. My brother was 6 years older and much sicker. My mom saw enough similarites that once they figured out his issues she had me tested too. The thing I remember most was sleeping in mist tents as a grade school kid. They had this plastic tent that went over the bed and they pumped in a salt water mist all night. You'd wake up, if you could sleep , all wet and salty. For my folks it was hard, I was a pretty healthy kid. A typical boy, running around and picking on my sisters. My brother however was very sick. In the 60's and early 70's there weren't a lot of options. He was in and out of the hospital until he passed in his early teens. Without him and my Mom's own instincts, I'm sure I would have been one of the patients that wouldn't have been diagnosed until my 20s or 30s.
 
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kittenface

Member
Kristen
You are the first person who I've found with the same gene combination. I was diagnosed at 38. I'm now 47. I don't take enzymes or meds unless I have a lung infection. I have had a blockage in my bowel 5 years ago. Lung function is good...dropped slightly 2 years ago by 7 percent but has improved. How is your lung function and energy levels? I live in Canada. Have 2 kids. Hubby was tested and he's not a carrier so my girls are fine.

Lori
 
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