life expentancy

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Charlotteokane

New member
hey, ive bin looking on websites and it says the life expentancy for cf sufferers is about 30. im only 17 but im getting worried about this! i just wondered how old some of you were to give me a rough estimate! also, if you knoew anyone with cf who is older as well? thanks! xxx
 
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anonymous

New member
I'm not sure what the exact number is, but the median life expectancy for someone with CF is about 33 years. This only means that half the people with CF pass away before they reach 33, and half the people with CF pass away after 33. The "median" number is not an average (the "mean"), it's just the number that falls in the middle in a group of numbers.

It is true that some people with CF are living to their 40s, 50s and 60s. It's very encouraging.


Maria (mother of three daughters, the youngest Samantha w/CF)
 
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serendipity730

New member
The average life expectancy after a lung transplant is about 5 years. Of course, people live longer and that takes into account the people who reject and only live a few months post-tx. And about the life expectancy - right now it is mid-30's, but the oldest person with CF right now is 76. I'm 22 and doing fine. I'm in grad school and getting married in a year! That mid 30's number looms in all of our heads, but don't let it get you down too much! Keep in mind that the people who are in their mid 30's with CF didn't have pulmozyme and the vest until they were in their 20's. Life expectancy improves a little bit each year, just take good care of yourself.
 
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jenhum

New member
The median is still around 33 I think, but they are going up every few years! When I was born it was 18, and I'm 21 now, so hopefully by the time I'm 33 it'll have gone up again!
 
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Diane

New member
When i was born the life expectancy was very low, then as i got older it went up to the teens. Now it is in the mid 30's. I am 40 now and it seems with new treatments on the horizon that number will go way up. Try not to pay too much attention to life expectancy, it can really throw you off. Remember perfectly healthy people have their lives cut short for all sorts of reasons. Just because we have an illness doesnt mean it will always cut us short. Have as good a life as you possibly can, even if you live to be 100, life is still short.........

~Diane 40 / cf/ diabetes / b.cepacia
 
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shamrock

New member
In Ireland the median age is 17, but this is just the median age and not the average, so the average could be 100 for all I know!! All I do is try and not live my life by statistics, but they do proove for interesting reading.
 
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anonymous

New member
Shamrock, do you know why there's such a disparity between Ireland's median rate and the US (not to mention the countries that have better medians than the US)?? Is it because the data is outdated, or is it due to less health care options?
 
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Beowulf

New member
There are over 900 mutations, 90 of which are most commonly observed in the population. If you are lucky and you have a mild mutation then, with the medications out there for CF you can live a long and relatively normal life. If your mutation is a more common one, or one of the mutations that are particularly rough on its victims, then the battle of how long you are able to survive or even thrive with the disease is yours alone to take up. I am 33 and have had exceptionally tough bouts with my CF. However, I also have had, with a little luck, some healthy periods as well. Be optimistic about your life expectancy, though depending on your mutation and your history, you should be realistic about the challenge before you. It bothers me that some of these CFers who have a mild mutation suggest that the disease isn't so bad, and that you can thrive with little effort. I've seen many CF friends die, and this is not the case in every situation. Be hopeful, but be realistic. On an optimistic note, as long as the durgs for CF keep improving, the expectancy with inch up ever year or two. Though beyond the meds, nourish you body with healthy food. It isn't true that any calorie is a good calorie.
 
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anonymous

New member
This is shamrock.
To be honest Im not quite sure. I know the median age in scotland(?) is 31 and that is just across the water from us! This <i>could</i>be due to different gene pools but Im not sure. In a recent report published here, it showed that the care for cf patients here is VERY poor. Some standards are dangerously low, but again Im not sure if this contributes to our median age-I think it somewhat does.
Even though here everything is paid for healthwise, I think there is just an overall lack of urgency of care here for pwcf.
Shamrock
 
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anonymous

New member
Thanks, that's what I thought from the small amount of information I've heard regarding Ireland's care. <i>If the main reason for the disparity IS the health care,</i> I find it very sad that in this day and age, there is such a huge disparity in care in other developed countries (as opposed to 3rd world where we know the disparity exists.) However, I hadn't thought about the fact that the gene pool is different. Makes perfect sense that the mutations in Ireland <b>could be</b> generally more severe.
 
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luke

Guest
charlotte,

The median age is mid 30's. When I was 8 it was 12, when I was 12 it was 18, when I was 18 it was 25, now I am 29 it is 34-35. Do not fear we just will never catch up!!!!!


luke
 
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mare

New member
Hi, this is the old lady here! I am going to be 51 years old this year!. Just like everything else, your life is what you make it. Do your best, listen to your body, be persistent is getting well when you are feeling out of tune! When I was born in 1954 the life expectancy was only 5 yeasr of age. As medicine and technology progresses there are new things to help us. <img src="i/expressions/heart.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"> I just added another milestone to my life as a cf'er, I just had surgery for breast cancer and that I am going to beat also! The message is be strong, live long!
 
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cfgirl38

New member
I'm 35 going to be 36 in August. I'm still doing well. Have my moments but don't we all. I agree with Mare. I wouldn't worry so much about the age thing. Life is what you make of it sick or not...
 
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RadChevy

New member
Life Expectancy has been rising for years... as you can tell by the posts. I believe it was just in the last year or two that the number went from 32 to 33 years.

For those with a lung transplant, life expectancy can add a day, or a month, or years... they say the average life expectancy post tx is 5 years. I like to think that has also increased, but not seen any new data to say they have increased that.


I am 41, had my lung tx at 33. My sister is 50, she had her lung tx at 46.

Many researchers of course are working on the cure, or the new therapies to help those with CF. In my lifetime of course I have seen many new treatments and extension of our lives. Often people who have CF, and damaged lungs want to "HOLD OUT" for the cure, instead of getting new lungs, but they forget, the cure is for those who are unborn, newly born, or those with no lung damage. It will not stop the damage in the lungs that has begun already. That is what I would love to hear.... a drug or treatment that REVERSES lung damage. Then no need for lung tx.

Taking care of yourself, by eating, exercising, being compliant with docs, approaching maintenance seriously, avoiding sick people if possible, avoiding smoke, are just part of the reasons for longevity. Also of course the various genes play a role in how well we do and how we progress. Being dilgent with treatments is one of the keys, though it is boring and no fun to do treatments, and your friends without CF are not doing them, they need to be done, so you can live your future you have planned for yourself. Life is worth it, life is short, so do what is in your power to handle.

Joanne Schum
luckylungsforjo@aol.com



Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

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http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm
 
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