[stacy-french]

My Cf clinic is not for the elderly with CF nor their hospital for CF anyone… the CF ward although newly redone reeks of aspergillus mold.. it is in the masks and the linens and all things that can retain smell.  The building is old and in need of a complete redo.   As a patient, I guess I phone when I think I need to see a doctor… it was at one time every three months that I would be scheduled to come in … no longer… no doctor has ever made future appointments in the past four years.  I have to phone if I need to see someone.  I have been given a new medication for bones which I had to stop using, there was no follow-up appointment made to check on me.  It is quite disheartening.  I did originally travel to North Carolina at UNC however it now has become quite impossible.  My sister goes there and her doctors see her every 3 months… I’m lucky to get an appointment with someone in 3 months.  (oh unless I want to do it facetime) I think is it a bit disgraceful that there is such a lack of care and concern for the patient..this past year,  I had complained quite a bit of difficulty in breathing… 3 months later a heart attack.  Not one doctor looked into it, it was just written off as  CF related issues even though my record shows my mother died of it.   It is sad there is no good clinic here.  It is sad that an elderly newer diagnosed CF patient is ignored… the young elderly (18 and over) seem to be all they are concerned with.   I may have not had a heart attack were anyone listening to me.   But so it goes.  I wish I could move but I am not able.

[stacy-french]

until DNA was found … late diagnosis was not possible.. which is why so many of we the late diagnosis due to rare CF genes were not diagnosed.  It is because I suddenly had aspergillosis grow in me.. then bronchiectasis was diagnosed, ignoring all the childhood and adult issues with sinus and lungs… it was the continual lung issues that I found UNC is a leader in Bronchiectasis.. the doctor there told me I had CF and needed to be tested.  Upon returning to Atlanta .. yes indeed I have CF .. later my sister was diagnosed.  It has been extremely difficult to deal with at this point.. no information on old people.. yet I am constantly now short of breath and feel as if I have been in a marathon.  I have difficulty accomplishing minor chores.  I don’t know what I can do to help myself and I get nothing from the CF Doctors I see.    It is hard to fight off depression and sadness.  I find no information on people like myself other than they were discovered to have CF… no prognosis.. no help..  and I would never give a penny to those who care nothing for folks like myself.

[stacy-french]

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.

[stacy-french]

No ability to smell since 4 yrs ago.   I have my husband season salt and pepper being careful on salt as I have basic taste.. sweet salt hot sour bitter.    It’s cooking by memory for me.  I must always tell restaurants to use minimal salt on steaks or that becomes an overwhelming distasteful event for me.

 

[stacy-french]

I do not believe this is a good way to examine a patient. How any times has an in person visit found an issue that was not why the patient contacted the doctor? These things would never be found via the internet. Not everyone has blood pressure equipment nor a stethoscope. One can not have blood work done. So the question then becomes who are the doctors asked to respond, and what were the questions asked, and if their worldview came into play with their answer.

[stacy-french]

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.