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stephen
07-13-2012, 07:21 PM
In looking at your "FAQs" I noticed question 56 - "What is the longest a person has lived with CF?", the answer given is 76.

I am quite sure, and surely hope, that there are people alive today who are older than 76 with CF. Printer is 72 and I am 70. I'm sure we both plan to be around past 76, G-d willing.

I also think that the numbers generally given for today's life expectancy for an individual with CF (37 - 40 years), and the number of people having CF (70,000 world wide),should both behigher. It seems that these numbers have not been changed in years. With the advances in treatment and diagnostics tools, I can't believe there have not been increases in both.

In any case, perhaps the answer to question 56 should be reviewed.

Wishing the best to all,
Stephen
70 y/o with CF and Bronchiectasis.

cfgf28
07-13-2012, 07:32 PM
I get why they say the life expectancy for someone w cf is 30's...bc they make it a median age...alot of people are not lucky enough to live to their 30's and beyond, many die very young, and its so unfortunate...I am so happy to see that there are people in their 70's w cf. Even though it seems alot of them were late dx. My bf was dx at abt 3 months old...hes almost 30...and I dont see his health dropping dramatically anytime soon.... The worl wide part I have no idea about...Most places ive read day there are about 30,000 people in the usa....so id definitely think there would be more than 70,000 world wide....But then you think about alot of the very impoverished countries, where people don't even have clean running water, ther aren't being tested for genetic diseases....

Printer
07-13-2012, 07:44 PM
Last September I was inpatient at Massachusetts General Hospital, in Boston. While there, one of the nurses told me that they, recently, had a CF patient in the hospital (for non cf issues) who was in his 90's.

The registry shows someone in their mid 80's.

He is my hero.

cfgf28,

I was dx at age 47 but I was born with CF. I was 15 before the sweat test was invented. When I was dx we didn't even have Cepro much less Toby or Pulmizime. We didnt have a vest or sailine. The gene was found 2 years after my dx.

When your bf was born, all of these things existed.

Like him I have 2 known mutations and unlike him I had over 70 hospitalizations and 3 surgeries before I was dx.

Bill

Bill

Imogene
07-13-2012, 08:50 PM
thanks Steven...yes that's good news. Let's change that!

stephen
07-27-2012, 01:44 AM
There is an article in the summer 2012 issue of CF Roundtable, titled What Can You Learn in 81 Years?
The article describes the author's life experiences living with CF during his 81 years - and counting. It is quite interesting and inspiring.


CF Roundtable is the quarterly news letter of the United States Adult Cystic Fibrosis Association. I have found it informative and interesting, and worthwhile subscribing to.

Wishing the best to all.

Stephen,
70 y/o with CF (G542X, D1152H) and Bronchiectasis

welshwitch
07-27-2012, 02:27 AM
I'd like the ask the "old people" a question. How did you think about the median age of survival when you were growing up? (Assuming you were diagnosed early). It's a psychological monkey on my back and sometimes prevents me from doing things I want to do. I'm 32 and the "median" age of survival is 37 right now. I don't want to be 80 and look back and regret all the things I didn't do <img src="i/expressions/face-icon-small-sad.gif" border="0">

stephen
07-27-2012, 11:20 AM
"Welshwitch",

The issue you mentioned is one I often think about.

As one of the "old people" with CF, I have been extremely fortunate, thank G-d. I was not diagnosed until the age of 62, and for me it was a blessing. I did not have to grow up and live with the specter of having CF, and ponder what the future had in store.

I did have lung, sinus, and "other" problems all my life. However, the specter of having CF was never a real thought. I was not really aware of what it entailed.

While an earlier diagnosis mat have prevented some of the lung damage I now have, including bronchiectasis, it might not have. The drugs and treatments now available did not exist.

When the diagnosis was made it was a relief. It finally explained the problems I had been having, and opened access to the CF treatment regimen that now exists.

I am all too aware that most CF suffers are not nearly as fortunate as I have been. Hopefully breakthroughs are not far off please G-d, and all CF suffers can live to be one of the "old people".

Stephen
70 y/o with CF (G542X, D1154H), and Bronchiectasis

SIcklyhatED
07-27-2012, 02:45 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>welshwitch</b></i> I'd like the ask the "old people" a question. How did you think about the median age of survival when you were growing up? (Assuming you were diagnosed early). It's a psychological monkey on my back and sometimes prevents me from doing things I want to do. I'm 32 and the "median" age of survival is 37 right now. I don't want to be 80 and look back and regret all the things I didn't do <img src=""></end quote>
I'm not old in any sense (I'm 19) but this is something that's kind of been on my mind a few times too. When I first heard about the avarage life span I thought that it sucked, but then I thought, "WTH, that's the <em>average</em>age and I for one am NOT average. Screw that." Basically my thought is that that number doesn't apply to me, it's not relevant etc. I don't really mind if I die "earlier" and am not a little 90 year old lady.

randford
07-28-2012, 02:38 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Last September I was inpatient at Massachusetts General Hospital, in Boston. While there, one of the nurses told me that they, recently, had a CF patient in the hospital (for non cf issues) who was in his 90's. The registry shows someone in their mid 80's. He is my hero. cfgf28, I was dx at age 47 but I was born with CF. I was 15 before the sweat test was invented. When I was dx we didn't even have Cepro much less Toby or Pulmizime. We didnt have a vest or sailine. The gene was found 2 years after my dx. When your bf was born, all of these things existed. Like him I have 2 known mutations and unlike him I had over 70 hospitalizations and 3 surgeries before I was dx. Bill Bill</end quote>

You give us all hope, Bill. You're my hero.
Randford (49 DF-508, P140S)

cfgf28
07-28-2012, 02:43 PM
Actually printer when my bf was born there was no pulmozyme, tobi, hypersal, vests etc...his mom had to do manual cpt, eventually there was a flutter device, he did not have a vest or inhaled medications until probably the last ten years....And he's been hospitalized and had surgeries too...he was dx til 3 months bc the local hospital accused his mom of being a bad mother because he was not gaining weight...and was born early. He went to childrens hospital where he was dx w cf....

Printer
07-28-2012, 04:22 PM
True my bad. Poor arithmetic on my part. He would have been about 5 for Cepro, and about 10 for pelmizime and tobi. I got my vest in the late 90s. Hell before I was dx, I was accused of being a drug addictand an alcholic.

RytheStunner
07-28-2012, 08:19 PM
Many people confuse the term "median" with average. They are not the same.

The reason the median age hasn't changed in years is because you can't accurately update that data until the current generation of CFers dies. If the median age of survival is 37, you can't start bumping that number up until the older people pass away. Now if we're talking the average age of CFers, then that's different because you're gathering data on living and dead CF patients.

Cutecurlz
11-04-2013, 07:59 PM
Hi
I have CF and CFRD
I am the ripe old age of 45 yrs young. I keep getting told that I am the oldest living person with CF in Canada ?!
I live in Nanaimo, BC Canada, originally from Pembroke, Ontario Canada

oldcflady
04-22-2014, 09:02 PM
Hi. I was just recently diagnosed with CF at age 76. I might not be the oldest CF person, but I guess that is pretty close. I suspected over the years that I might have CF because my son was diagnosed at age 5 and died at age 28. He was born in 1962 and diagnosed in 1967. So many things that are available now, (treatments, drugs, knowledge of the CF gene and all the mutations, vest (I always did his postural drainage manually) didn't exist then. I knew all the symptoms, etc. but no doctor ever took me seriously about my CF. I was never tested until 4 months ago. The diagnosis was a shock to me after all these years. I have a mild case, and the lung involvement until recently had not been noticeable. The outlook for young CF patients now is so much, much better. I wish so many of these things had been available to my son. when he was diagnosed they told us the life expectancy was 5-8 years. He beat those odds and lived a full life until age 28. He went away to college and graduated with a degree in accounting. Then he went to graduate school and was only 6 credits away from getting a masters degree when he became too ill to continue and came home to live. At that time his dr. told him he probably had less than a year to live. He lived for another 6 1/2 years. He spend a lot of those last years as a role model to the young CF patients that he met at the clinic and in his many hospital stays. He helped organize a newsletter that went out to other CF patients. (there was no internet then, or anything like this forum available). So don't look at those statistics and feel defeated. Now they are finding so many like me who never were diagnosed and lived a full active life for many years. I have been married for 52 years, had 3 children, and now have 6 grandchildren. I had a career as a CPA owning my own business, and also taught accounting in a large university for 12 years. I often think of what courage it took for my son to persevere all those years and not let CF control his life. He only lived 28 years, but he packed every minute full of accomplishments and never stopped pursuing his goals. He was very intelligent and reading well at 5 years old. He read everything thing that was available about CF that he could find over the years. He knew what the odds were, but he never let that stop him. so my advice to you is not to look at those numbers and feel helpless. Live your life one day at a time, and be who you are as a person, that just happens to have CF. Don't let the CF control your life. I hope that you too someday will be 75, or 85 or even 95 and can look back and say that you lived a full meaningful life.

Jet
04-22-2014, 09:38 PM
Welsh Witch - I was diagnosed in 1964. I've been older than the median age for as long as I can remember. Some where in grade school i stumbled onto the median age #s. I was within years of passing it at the time. It was pretty scary. My Grandmother was great. She said that lots of people in the world die to young for all kinds of reasons. Once my brother passed away I realized how blessed I was and I've never looked back. I plan to make 100.

Simba15
04-23-2014, 11:28 AM
Does that me me number three or four? 😊 I am glad I wasn't dx til age 50 however I feel jipped in a sense. I have been sick my entire life but never got any support that many CF patients receive- that is medical support, family support, and community support. I also believe that there could have been financial compensation for me for my college education. Because I was diagnosed after I was educated there is no retroactive compensation that I know of. I do not think that is fair at all. In addition I was terminated from a position because of my cystic fibrosis. I had not missed a great deal of work I only nearly documented it under FMLA in the event I needed to take the time off. I'll never inform another employer again. The other downside of being an older person is that because our symptoms are milder than the younger people many doctors dismiss what we are telling them or they just plain don't know what to do to help us. That has been the case even with the cf centers. The pros are that I am not as sick as the younger people have been and I am thankful for that. I worry very much about my future because now I am in my 50s and live alone. No one can forecast for me what my future looks like

Simba15
04-23-2014, 11:33 AM
I was not diagnosed until approximately three years ago so I didn't grow up knowing I had cf. Now that I know what it does lurk in the back of my mind every day. I plan on living to be as old as I would've even without cf and plan to live to be very old and into my 90s. I worry about it in terms of what will happen to me when I get old however I don't let it stop me from doing anything that I do. I work 70 hours per week and will continue to do so as long as I am able

cleanaire
04-23-2014, 03:23 PM
Hi everyone. I am a 67 year old female diagnosed at age 57 by sweat test and DNA. It was suggested by my daughter who was pregnant undergoing genetic blood testing. Turns out she's a carrier. I have the deltaf408 and r117h. So I was not dx by a dr. At one hospital stay the woman in the bed next to me overheard our conversation. She had two children with cf and she directed me to the correct cf center. I live on eastern long island, ny. My dr thinks my genes lined up in such a way so as not to give me an early death but make me miserable most of my life. I'm glad I finally got a dx because most of the drs I saw I think we're startng to think I was crazy. Every time I was in the hospital everything was. "idiopathic" and 13 boughts of pancreatitis. My cf dr tells me I am their oldest patient, of which I am very proud.

njlins
04-23-2014, 03:44 PM
I will add my two cents. I was sick with sinusitis all my life and almost died at age 11. I also started school a year late as I was too ill to start school back in 1950. I was finally diagnosed at age 53. The treatments with the Pulmozyme were a miracle as this thinned my mucous so much and improved my health. I am now 69 and having my first real lung flare up other than one with aspergillis about 10 years ago. I was hospitalized for five days and now on IV's with PICC for a few weeks. This will be followed by treatment for mycobacterium when the cultures come back. These take about six weeks. I have cultured with MAC for many years. I could tell you lots and share but I am so thankful for each day and plan to fight this fight for many years to come.
Delta F 508 and 5T allele with a 12 GT which makes it significant but also a milder form of CF.

Helenlight
04-24-2014, 08:59 PM
Could I add to this and ask for the oldest people with DDF508? Since this is the most common mutation and might give a reasonable indication of where the largest group of PWCF are at/ or what's currently possible? Thanks :-)

tiger1
04-25-2014, 12:56 PM
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.