With the advances in medicine many CF patients are living to be older. I am 48 years old. Diagnosed at 6 weeks old, but my whole life there was always this conversation about how I might not make it and here I am. I have CFRD, CF arthritis, and use all the meds , tobi, cayston, hypersal, pulmozyme, etc etc.. Bone Density is a problem currently for me with my spine and back. I do all the treatments to stay healthy but I still have problems with seasonal changes and asthma.
Just came across this thread. As a medical student in Georgia, we diagnosed a 69 year old man with what we called variant cystic fibrosis. He had chronic respiratory symptoms, recurrent Pseudomonas respiratory infections, normal pancreatic function, and intermediate sweat chloride levels (55-61 mEq/L). As a medical resident in Alabama, I diagnosed a 65 year old woman with cystic fibrosis. She too had chronic respiratory symptoms, recurrent Pseudomonas respiratory infections, and high sweat chloride levels (102-119 mEq/L). These cases were published back in mid to late 1980's (Southern Medical Journal, Nov 1986 and American Journal of Medicine June 1989). I do not know how long these patients lived as I moved on in my training.
JustaCFmom
New member
Just out of curiosity, why did you come to this forum?
Just wanted to join in. I celebrated my 65th birthday a few days ago. I was diagnosed at age 40 through the gene test. Sick all my life with respiratory issues and had hemoptysis often all through life. Doctors would give different diagnoses. Sweat tests were done twice but both came back inconclusive. The last pulmonologist I had before my diagnosis told me that I had all the symptoms of CF but he was sure I didn't have it or it would have been caught "by now." But he did start to treat me with a few CF drugs. As I got sicker he decided to send me to MassGeneral Hospital for a workup where they did the gene test and discovered I had it afterall. From then on I've been treated at CF centers. Some weeks/days/months even are very difficult. There can be weeks when I don't get out of the house. But during the "good" stretches I try to get out, stay in touch, and keep right on living. My mother is 92. However she now has dementia and lives with us. Unfortunately she came down with pneumonia and is in the hospital. I am on IV antibiotics at home. So things aren't easy, taking care of her, taking care of me and the pets. But I have help. And I am glad to have the message boards to check now and then. It helps to know that even though our experiences are all different, we have support from those who understand what we are going through. Donna - (happy to have reached medicare age!)
The CFF currently reports: "The predicted median age of survival for a person with CF is in the early 40s." Needless to say, it's a sensitive issue. How do you calculate? Median means half of all CFers are deceased by the stated age and half are over that age. This may vary by genotype or phenotype, or other factors such as age at diagnosis, country if origin, etc. but I am unaware of any calculations done on CF subsets. But the original question - how old is the oldest - is a fun one. I suspect there's more than one that has reached their 90s.
The best solution here is good treatments, better and better all the time, intensive research, excellent adherence to your treatment protocols, and if I may add - prayers!
Blessings.....
P.s. wouldn't it be fun to add an "Over 50 or 60 or...." topic and see the threads and members grow.....!
The best solution here is good treatments, better and better all the time, intensive research, excellent adherence to your treatment protocols, and if I may add - prayers!
Blessings.....
P.s. wouldn't it be fun to add an "Over 50 or 60 or...." topic and see the threads and members grow.....!
W
welshwitch
Guest
I would love an Over 50 or Over 60 Section of the Forums!!!! So much wisdom!
Was showing my son in law, a medical resident, my publications and was curious what the oldest CF patient was.
Hi godawg82,
I'm so glad to see your post.
I am 46 and was,diagnosed with CF at 4 y.o. via sweet test. My situation is similar to the first man you described (with the exception that I did not have a late diagnosis).
I am pancreatic sufficient and have chronic pseudomonas. My genetic testing found 1 Df508 and one unknown mutation.
Recently my sweat tests results indicate a functional chloride channel...which does not give me a proper cf diagnosis.
I seem to be in a very unique situation that has pulmonologists intrigued and working with me to figure this out. Regardless of the change in my sweat tests results, my doctor continue to treat me as a CF patient.
I have not heard of another situation like mine. Thanks again for sharing.
Wendy
I'm so glad to see your post.
I am 46 and was,diagnosed with CF at 4 y.o. via sweet test. My situation is similar to the first man you described (with the exception that I did not have a late diagnosis).
I am pancreatic sufficient and have chronic pseudomonas. My genetic testing found 1 Df508 and one unknown mutation.
Recently my sweat tests results indicate a functional chloride channel...which does not give me a proper cf diagnosis.
I seem to be in a very unique situation that has pulmonologists intrigued and working with me to figure this out. Regardless of the change in my sweat tests results, my doctor continue to treat me as a CF patient.
I have not heard of another situation like mine. Thanks again for sharing.
Wendy
W
windex125
Guest
I turned 60 in Dec. I was extremely bad bad bad with money, savings and credit card use. it took much work with therapy to make me change my irresponsible ways. I had that feeling well you never know with this disease ? I really need to hv that item now. So instead of sitting on a nice saving we live pay check to pay check. We could of went to Europe a few times. So I say to all you young folks, don't hv that in the back of yr head abt yr life ending too soon. We all hv different aspects of this disease, and someone shd ready change those statictics we are way over the 30,000 they hv been listing for 20-30 years now and also the age factor as well. You know when I was younger it just screwed with my thinking, as stated before on other threads I was diagnosed as infant then undiagnosed at age 8 then re diagnosed again at early 30's I was at a family function and over heard someone say, OMG didn't he know she had this disease when he married her??? How mean right, but people say the stupidiest things sometimes. My husband does not feel as though I pulled the wool over his eyes as the saying goes. wow I am showing my age with that statement. I have been a wonderful wife really I am patting myself on the back with this one. Also I was told I wld never get preg. and I was ready to divoice I knew my Italian husband wanted a big family but after 11 yrs. of marriage and hvg those thoughts to leave the stick turned pink and I delivered a very healthy 7 lbs.14oz boy. I was never able to get preg. again unfortunately and it wasn't for lack of trying, ahhh maybe I shd not say that. My crazy sense of humor, for sure. I just became PI last yr. my problem has always been my lungs and severe bronchesasis (please don't judge my spelling) I hv one functioning lung and use o2 at night. But most of all I hv a positive attitude and realize my time to pass will happen when my number is called. I did hv to give up my red wine and that really killed me. I enjoyed my red wine with dinner every night, now I drink selzer, how do you compare that. OK this is longer than expected. Good Luck to you all Many Hugs. Pat/60
benthyr123
New member
I would love to see a group for older CF patients....we have a great deal of experience to draw on.
I was diagnosed at age of 12. Now 67 soon to be 68. Live every day as we all should, as your last. Enjoy love and forgive. I have never thought of my self any different as compared to others. I have seen close healthy friends one yr. die the next. We all will never escape death. In the big picture of life we live such a short time on this earth as compared to eternity. God is good all the time!
Simba15
Member
I am sure you inspire many young people here with your story. I pray to live into my late80's or even 90. my mom is now 91. dad was 86 when he died.
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welshwitch
Guest
I plan on living to at least 80 as well. 90 would be ideal. I'd be OK going at 90 
A nice, long life.
A nice, long life.