judy-layton
Forum Replies Created
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MY HUSBAND DON WHOM I HAVE BEEN MARRIED TO FOR 57 YEARS, IS MY CAREGIVER. HE HAS BEEN THERE FOR ME EVERY TIME I NEEDED SUPPORT….ABOVE AND BEYOND WHAT HE SIGNED UP FOR!!! ANY OTHER MAN WOULD HAVE LEFT ME BY NOW!!!! I OWE HIM MY LIFE BECAUSE HE NEVER GAVE UP ON ME, EVEN THOUGH I WOULD BE READY TO GIVE UP ON MYSELF…..I LOVE HIM TO THE MOON AND BACK!!!!
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MY BIGGEST SHOCK, AFTER MY DIAGNOSIS AT AGE 46, IS THAT I AM STILL HERE AT AGE 77!!! WHEN I WAS DIAGNOSED I FELT RELIEF THAT SOMEONE HAD FINALLY TOLD ME WHY I HAD SO MANY HEALTH PROBLEMS!!! THAT WAS OVER 30 YEARS AGO WHEN NOONE KNEW ABOUT LATE DIAGNOSES OF CF….I HAD TO EDUCATE ALL MY DOCTORS AND NURSES ABOUT CF. THEY ALL BELIEVED THAT I WAS TOO OLD TO HAVE CF…. WHEN I FIRST WENT TO CF CLINIC, I HAD TO GO TO A CHILDRENS CLINIC BECAUSE THERE WERE NO ADULT CLINICS!!! EVERYONE AT THE CHILDRENS CLINIC LOOKED AT ME SO STRANGELY!!! THANK GOD FOR DOCTORS AND RESEARCHERS….
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I AM 77 years old and have not seen improvement on my PFT’s… In fact my numbers are worse since I had Covid. But even when I first started on Trikafta I only saw 1-2 points improvement on PFT. I do have improvement in my coughing…I have no cough at all. Also my sinus infections have decreased…I don’t have many stomach problems except 2 bouts of pancreatitus.and have never taken enzymes. Overall I feel better, but have shortness of breath with my PFT in the mid 40’s. I think Trikafta has affected my depression also. It is worse and I had to switch my medication for depression. I think the younger patients will see more improvements…
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Hi…. I just became a member of this group. I was not diagnosed with CF until I was 46 years old. My youngest sister had a baby who was dx in the womb with CF. The doctors told family members to be tested if we had anyone who had lung issues or digestive issues.
My brother, who is 4 years younger than me, and I tested positive for CF. He had digestive issues and I had lung issues. I also had a brother who died at 6 months of pneumonia, which was probably CF also. That was in 1946 when no one knew about CF. Out of 5 children 3 of us had undiagnosed CF.
All of my life I had asthma, chronic bronchitis, and pneumonia. It would take me a long time to heel when I got sick. I constantly fought with doctors because I didn’t behave like a normal person!!
I switched to a Pulmonry dr. in my 30’s. He treated me for my lung issues. So, when I tested positive at age 46, he would not believe that I had CF because I was too old!! It took me a long time to convince him…with a lot of help from Johns Hopkins Hospital in Baltimore Md. I finally went to Hopkins full time, but I still continued with my pulmonary dr. in case of an emergency, because Hopkins is a 2 hour drive.
I am now age 77 and still doing well…am on Trikafta and dealing with some side effects. I hope doctors have learned not to say,”you are too old to have CF!!”