PDA

View Full Version : Oldest Person With CF



stephen
07-13-2012, 07:21 PM
In looking at your &ldquo;FAQS&rdquo; I noticed question 56 - &ldquo;What is the longest a person has lived with CF?</a>&rdquo;; 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&rsquo;m sure we both plan to be around past 76, G-d willing.
I also think that the numbers generally given for today&rsquo;s life expectancyfor 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&rsquo;t believe there have not been increases in both.
In any case, perhaps the answer to question 56 should be reviewed.
Wishingyou 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