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    • #18666
      Luisa Palazola
      Keymaster

      In general, most people don’t like getting older. However, in the CF community, it’s not unusual for folks to celebrate getting older and surpassing their life expectancy. For me, I never expected to be almost 30 and healthy. So, I happily welcome the years that come.

      However, because I was never planning to be older and healthy – I also wrestle with what I’m supposed to do now. It’s strange territory and sometimes I feel unprepared to be almost 30! 

      What are your thoughts on getting older?

    • #18682
      Ron Holdren
      Participant

      I never knew that I had CF until I was 40 yrs old. I had always had problems with asthma and pneumonia all through my life but never in my wildest dreams did I think I had CF. I found out on a visit to the VA Hospital for a checkup and my doctor at the time walked into the exam room and heard me cough and right away he said that he thought that I had CF and ask if he could draw some blood and send to the Mayo Clinic, I agreed and a few weeks later the results came back confirmed. I am now 68yrs old and managing my CF with an outstanding CF Care Team. I take it day by day and live life the best that I can and thank God for every day.

    • #18683
      Timothy Bransford
      Participant

      At age 34, I was diagnosed with CF.  For the previous 12 months I had fought a losing battle against lung infections that left me emaciated, struggling with fevers and experiencing repeated and severe hemoptysis.  Up to this point, I had seemed like a relatively healthy person.  So, I was shocked to learn the CF diagnosis and asked the doctors what it meant.  They said they had no real predictions except “CF will likely kill you”.

      I did not handle this news very well and fell into a serious depression.  My previous life was over.  After 14 years of service, the military medically discharged me.  I had to find a new vocation.  I needed a new mission.  I emerged from these dark days with a new mantra.  I determined to live each day as if it were my last, but I would plan as though I could live for years.  And I would be grateful for each day that I drew breath.

      I am 66 years old now and still doing relatively well.  I continue to fight lung infections and hemoptysis, but these struggles are minor compared to 30 years ago as a result of the preventative measures employed by the CF Clinic at the University of Washington Medical Center.  I have grudgingly given up lung function over the years.  Recently, CFTR modulators have proven helpful, so I seem to be in a holding pattern regarding lung degradation.  CF only really impacts my lungs so I’m not fighting other CF related issues.  I realize I’m fortunate, and I am thankful for the life I am living.

      As for the future, I am about to retire from what I call my “second life”.  My children are all grown and have children of their own.  My wife and I are ready to enjoy our retirement years.  We are in a good position financially (mostly due to the “plan to live for years” part of that mantra).

      At 34, I had no idea what the rest of my life would be.  Today, I still have no idea what the future will bring.  I only know that I’m thankful for every moment I have.

      • #18686
        Luisa Palazola
        Keymaster

        Woah, it’s wild to think you were able to serve in the military for so long! Did you have any lung issues before the year leading up to diagnosis?

    • #18684
      Tim Blowfield
      Participant

      My wife recently turned 80. Not bad with CF. Was not diagnosed till age 67 though we suspected it for 10 or so years. For many years she had presented a variety of vague and mysterious symptoms (mostly bowel and an inability to tolerate altitudes) which our Doctors could not make sense of. More than once she was accused of being a hypochondriac and when we suspected possible CF were told “not possible. You’d be dead by now!” Well. Not dead yet! But do have a plethora of co-morbidities. Am trying to get Trikafta but can’t yet as it is not registered yet in Aust for people with R75Q. We want to see what it does with the co-morbidities (cardiomyopathy, muscle weakness, hyperparathyroidism, Adrenal failure, hypokalaemia, diabetes etc).

       

      • #18687
        Luisa Palazola
        Keymaster

        Tim, that’s incredible! I hope Trikafta gets approved soon — what was your wife’s LF at diagnosis vs now?

        • #18693
          Tim Blowfield
          Participant

          LF has declined but is still quite good for a pwCF. Her issues are the Co-morbidities – cardiomyopathy, muscle weakness, hypokalaemia & Adrenal failure, Hyperparathyroidism, Diabetes, etc. all appear to be caused by intracellular electrolyte abnormalities caused by the faulty CFTR protein reducing Chloride transport.

        • #18700
          Stacy French
          Participant

          Here in the states, it was just approved for me who has a rare gene.. I too was diagnosed late in life.  I just began taking trikafta.  So far my breathing is a bit better, but I still suffer as if I just ran a marathon at times.  I have pseudomonas in my chest and sinus, pancreatitis,  bronchiectasis, aspergillus, and now osteoporosis.. what more do I need?  My sister also suffers from it but with only lungs affected.  She says she is able to breathe better.  I am still on the sidelines.. I still have difficulty getting much accomplished for lack of breath.   Some days are better.  Prior most days were very difficult.   I don’t get monitored very well..  as anyone over the age of 18 is an adult.. and the old ones are not treated the same.  There is little information about us.  There are no studies and I have only been asked to be in a glucose type study which was not something I was interested in.  I would have preferred phage studies.. I am too old.   so be it.. I wish your dear wife blessings and hope for the future.

           

    • #18692
      Timothy Bransford
      Participant

      Growing up, I was “the sickly child”.  I was the youngest son packaged between 2 older sisters and 2 younger sisters.  I was always experiencing some sort of fever, cold, sniffle, flu, bronchitis, asthma, pneumonia…we did not know it was CF.  Through it all I soldiered on.  I played the trumpet in high school.  I excelled in football, basketball, and tennis.  I ran track (sprints mostly).  I was an avid outdoorsman.   I backpacked at 14,000 feet in the Rocky Mountains.  I scuba dived to 100 feet in the Red Sea.  As an adult, I became an elite soldier.

      But a series of events conspired to change my life:

      For the previous 7 years before my CF crisis, I lived and worked as a military attache in the following cities/countries:  Mexico City, Mexico (3 years), Beijing, China (2 years), Khartoum, Sudan (1.5 years).  The common denominator for these countries is they all have horrible air quality/pollution.  I believe the cumulative effect of living in these countries led me to a CF diagnosis.

      Khartoum was my Waterloo.  It is situated in the heart of the sub-Saharan desert and often experiences massive “haboobs” or dust storms that literally turn day to night.  Breathing in this cloud of dust was like taking sandpaper to my lungs.  It was in Khartoum that I fell off the edge and plunged into crisis.  Raging fevers, precipitous loss of weight, and massive bleeding.  The upper-right lobe of my lung had a massive hole and blood was pouring out of it.   I was medically air evacuated to Germany by the embassy in Khartoum.  The hemotysis was horrific.  I was bleeding to death.   I could feel myself slipping away into a strange ether.  The military flew my parents from Alaska to Germany so they could say good-by before I died.   In desperation, they thought it might be TB and gave me all the synthetic antibiotics available.  Fortunately, one of these antibiotics was Cipro.  It literally pulled me back from brink of dealth.  It saved my life as we realized later that my lungs were being ravaged by Pseudomonis A.

      That  is my story.  I know there are many others who have been diagnosed with CF in their later years and I often wonder how long I could have gone without the diagnosis had I not lived in those 3 countries.  I  might have just been “a sickly adult” all these years.

      • #18694
        Jenny Livingston
        Keymaster

        Timothy, this reads like something from a movie! I’m so glad you were able to have such varied and exciting life experiences, although your “CF crisis” as you called it sounds far too “exciting” for my taste. How incredible that you made it through while also receiving the diagnosis that finally led to some answers. Thank you for sharing all of this!

    • #18697
      Stacy French
      Participant

      Sadly for some of us who were diagnosed very late in life.  There remains no useful information for us.  We are not asked to be in studies and we have no place in this other than to aid in drug development by taking cf drugs.  It is sad that this foundation has done nothing to insure the abatement of mold in a local hospital which claims to have a “new CF ward” in a moldy building the hospital puts CF patients in.  Even all the masks smell of mold.  It is sad.  Mold is dangerous to people suffering. I was told by the environmental employee.. “what do you expect, you’re in the south”  yes that was his answer to my asking for the place to be tested!  They continue to purchase buildings and land throughout the area.  Nothing done for the state of that building filled with mold.   The CF foundation never answered my query either.  I guess because I am truly old and suffering with cf and without much in the way of information of what my future holds.   Sadly too old to be put into studies about phage therapy with my pseudomonas infection that will eat a hole in my skull as it is now impervious to antibiotics, not to mention the effect on my lungs.  A great disappointment for me the old sufferer of CF and those who care not about the true aged sufferers.

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