Cystic Fibrosis News Today Forums Forums Support Groups Adults​ ​With​ ​CF What is the biggest shock since your diagnosis?

  • What is the biggest shock since your diagnosis?

    Posted by luisa-palazola on October 21, 2022 at 4:02 pm

    I’ve noticed there are a few folks here that are late diagnoses. I  don’t have the same experience, and I only know a life with CF. So, the idea of being diagnosed late is foreign to me. I am so curious to know what your experience is like.

     

    So – for those who have been diagnosed later: how has your life changed since your diagnosis? Do you feel relief since being diagnosed? What would you like others/ medical providers to know about your journey?

    jeanne replied 1 year, 4 months ago 5 Members · 6 Replies
  • 6 Replies
  • jeanne

    Member
    November 11, 2022 at 11:58 pm

    I have been thinking about this all week, but can’t pin it down. And I guess that is it: my diagnosis continues to evolve… nothing is stable. I thought that The Diagnosis, in July, was the start line to a new path that I would follow. But now I have a likely ILD (interstitial lung disease) Pulmonary Sarcoidosis. This after a bronchoscopy on 11/2. And if I have “sarcoid”, it may put the solidity of the diagnosis of CF in doubt (I have a ‘novel gene mutation’ -c.-581G>A- as my 2nd, with the common DF508 ). And meanwhile my gut problems just go on and on. Everything seems to have “shock factor” every few weeks!

  • wendy-shefte

    Member
    November 16, 2022 at 1:08 pm

    The biggest shock is that it wasn’t actually a shock to receive my diagnoses 5 months ago at age 58. I feel like it’s something I always suspected in the back of my mind. It was somewhat of a relief to pinpoint the cause of so many of my medical issues, and to know that I now had the strength of a diagnosis to allow me to receive the treatments I need. I’m not saying I’m happy I have CF, but honestly I’m happy I was diagnosed and am now being seen and heard by doctors. Does that make sense?

  • Deanna York

    Member
    November 17, 2022 at 2:43 pm

    My biggest shock was to have the diagnosis at all. I was dx in 2007. 2 mutations, one deltaf508. I turned 76 yesterday. And…I will start on Trikafta November 22, 2022!!  I will be shocked if I am without thick mucus, continuous sinus drainage, belly aches, etc. All due to CF. I WILL BE GRATEFUL to be rid of all that mucus. My quality of life will be hugely better. And I won’t drive other people nuts clearing my throat and sniffing and coughing!!  I had someone tell me at one of my high school reunions that she didn’t like to sit near me because of all that noise. I had no idea and surely didn’t know I had CF mutations. It all made sense when I found out I had 2 mutations. I’m planning on Trikafta working. Deanna

  • judy-layton

    Member
    November 18, 2022 at 4:57 pm

    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….

    • jenny-livingston

      Member
      November 21, 2022 at 12:21 pm

      Judy, what an incredible shock! I’m so glad you’re still here. I can only imagine the relief that came with an official diagnosis… finally! But I can also imagine the frustration of having to convince medical professionals that you do indeed have CF while also being the one to teach them about it.

  • jeanne

    Member
    February 22, 2023 at 8:19 pm

    I wonder if I can wake up this thread with a few comments and questions? DEANNA, I am wondering how the Trikafta is going? I was on it for 3 months + 1 wk, but my liver enzymes skyrocketed. I also had gotten a UTI. I was taken off Trikafta, and after re-evaluation after about a month, permanently off it. It only took a few weeks for the glorious positive effects it had had on my sinuses and joints to fade away. No real change to my lungs. Unsure about my gut (intestines in particular).

    I really hope that Trikafta is a good fit for you. Feeling its positive effects kick in was such an interesting experience. I wish I could keep the good effects without the bad, but it doesn’t work that way with liver damage risk.

    My liver enzymes have dropped back down a lot but still are above normal, even after 3 months. So now I’ve added hepatologist” to my list of “ologists”.

    But one thing that I understand is that lung issues are the most monumental issue for most with CF. For me, it turns out that I also have pulmonary sarcoidosis (diagnosed in November)… and my shortness of breath is mostly due to that. Just getting going with a specialty clinic for “sarcoid”, while continuing to be watched by the CF clinic, and my sinuses treated again by ENT and Allergists, and for my gut I have a new gastroenterologist. It’s hard to say from which disease my fatigue emanates.

    DEANNA, if you see this, plz chime in and let us know how your Trikafta voyage is going. I sure hope it is a positive game changer for you.  -jeanne-

Log in to reply.