A month ago today...

joetrivium

New member
...I saw an ENT for the purpose of exploring sinus and throat issues that I have had since I was a kid. For the first time, ever, a doctor suggested that I have a sweat test to rule out CF. "I don't think you have it, but I want to rule it out before we proceed," he said. I began my research, then had the sweat test which came back with intermediate results. Two weeks ago, I had my genetic testing done which today (1 week before my 52nd birthday) indicated conclusively that I have this disease.

Like most Americans (I suspect), I knew that CF was basically a childhood disease...that no one would want to have. However, the diagnosis has put a crucial piece into the puzzle of my medical history which has been (as I believe now) conspicuously missing. Despite a history of upper respiratory, sinus, and fertility issues, no one ever put the pieces of the puzzle together. I feel in relatively good health, and have been retired from a 20-Navy career for 10 years this month. In this past month, I found out that two of my siblings have known they were CF carriers for years.

As a professional educator, I have been puzzled and hindered by a productive/spontaneous cough that makes talking sometimes a difficulty. While I have a robust sense of humor, I have subdued my cough for decades--knowing that I could get myself all f'klempted if I laughed without restraint. I have always joked with my doctors that if I could just get myself straightened out between my eyebrows and collar bone, then my health would be perfect. I am grateful not for the disease, but for the diagnosis and...finally...the missing piece of the puzzle. I look forward to finding new modalities of treatment and a future of breath, song, and laughter. I hope I can inspire and encourage others who fight this disease and suffer so much worse than I do. I have not learned all of the CF vernacular. Nor do I want my life to be all about CF. I do hope to advocate on behalf of others who face a life with CF. I look forward to more fantastic learning and living.
 
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welshwitch

Guest
Wowza! Diagnosed at 52!!! Sounds like you are in a good place with it. Keep up the positive attitude -- a must for CF. I'm 33 and doing great myself.
 

concerneddad

New member
Joetrivium,

Your story sounds very similar to that of my mother-in-law who was diagnosed last year at the age of 73 (after having had many of the same problems you note for much of her life). She was finally tested for CF after my daughter (her granddaughter) was diagnosed last year at age 16 (she has lung issues but is pancreatic sufficient and had relatively low sweat tests - about 40- genetic testing confirmed CF). We have since found out that my son (age 19) has CF as well. He does not have any lung issues, but had a bout of pancreatitis last year (which is generally unusal for someone of his age) which, in combintation with my daughter's diagnosis, led to his testing (it turns out he likely had a couple of episodes of pancreatitis prior to last year that we all thought at the time was a stomach bug; he is quite the trooper because pancreatitis is quite painful and in the early cases, he got over it at home). My experience with CF is that it is a crazy disease that affects each person differently and is surely vastly under diagnosed.

Best of luck to you. I know that both my daughter and mother in law are feeling much better after having started regular breathing treatments.
 
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sdeuber

Guest
welcome to the club! I have been diagnosed at age 36 due to fertility issues and thanks to a great and smart fertility doc. It was such a big relief for me to finally have answers to all the issues I had. I was actually happy to take charge now and to get better. So far so good. Our task is now to educate doctors and families on CF - not just as an infant or childhood disease.
 

Aboveallislove

Super Moderator
All those with late diagnosis...are you trying kalydeco? I'd think you'd have some residual cart function and thus would benefit from it, off label.
 

MichaelL

New member
I was diagnosed at 34 after a series of lung infections that wouldn't clear up, so your story sounds similar to mine -- although your diagnosis is even later. Based on your symptoms, I'm assuming you're also pancreatic sufficient, which is also the case for me. Now that they've determined that you have CF, you can receive more appropriate treatment that will help keep you in continued good health. This disease affects different people in different ways, so there's no typical case.

Welcome to the forums. They're a good way to learn from others experiences.
 
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sdeuber

Guest
Yes - I am Kalydeco - wonder bra and wonder drug - what else can a woman ask for :)
 
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