i have cf and worry of dying

[enzo]

so a bunch of this type of things has been on my mind lately. i scored really good on the lung breathing test, which was 104 percent. and im at a good weight.

do a lot of people live long normal lives with cf? are cf people able to live to 80 years old if its in their family ? could you live a long life after a double lung transplant? in 20 years, will everyone survive after a double lung transplant? what do they mean 50% of double lung transplants dont live after 5 years? why is that? im freaking out about this, even though i might not need one in twenty years or so.

 

[Jane]

Hi, you have some very good questions! Try not to let them overwhelm you. The thing I have learned about CF since my older son was diagnosed 21 years ago, is that CF is unpredictable. It is hard to say for certainty where anyone I'll be in the years to come. It is encouraging how much is being done for CF patients with treatment options, medicines and care.

There are many people with CF who are living a long time, many on this site (who will probably reply). Hearing their stories also provides hope for the future. Your numbers are very good! Continue taking good care of yourself and keep asking questions!

 

[Printer]

Enzo:

I'm 72 and there are 3 others at the CF Clinic that I attend who are over 70. Last year when I was in the hospital, one of the nurses told me that there had been a patient there (for non CF issues) who had CF and was in his 90's. If you check the Annual Report from CFF, they list someone in mid 80's.

Bill

 

[Tisha]

Hey Bill, awesome news! I'm 32, have been an independent businesswoman all my life (never employed so far), gone to study abroad (in Utah), and am happy with life!

 

[beautifulsoul]

Your health seems like it's fantastic right now. I don't see the need to worry so far ahead. Enjoy the present time and worry about that when the time comes. No one can say for sure where medical treatment will be in 20+ years from now. Hopefully it's better than it is now. Over 50% of the CF population today are over 18 years old.

As far as a double lung transplant, the average survival rate is 7 years. Rejection or infection are the most common reasons why people die after an organ transplant. But, just like CF they are still advancing in medicine to help fix these issues for people to live even longer after transplant. There are people with transplants today that are still living after 10 and 15 years.

I had a double lung transplant when I was 15 years old in March 2007. 5 years ago. I've been in stable condition with no problems at all for 4 years.

As Albert Einstein once said "Learn from yesterday, Live for today, and hope for tomorrow."

 

[TonysMom]

Enzo,
I know how it feels to be shocked hearing statistics that limit your life plans. But please- ignore what you read and hear and just take care of yourself the very best you can
and live your life to the fullest. I was told my son would probably not live beyond 17 and he is now 44 with no transplant yet! You just can't imagine all the research
being done to help all of tne people with CF! Amazing things are on the horizon, so prepare yourself by taking the best care you can of yourself and following the regiment
your doctor prescribes. The CF doctors are up on everything and you must trust that what they tell you will take you beyond today's predictions!!

 

[Jet]

Enzo,

I'll be 50 in November.(that's scary). At 17 my numbers were probably similar to yours. Although they didn't have anywhere near the kinds of tests and treatments that we have today. My scores now are usually in the 90s-low 100s. I've led a very happy and productive life. I finished college and have worked non-stop ever since. I've been married for 25 years and have 2 beautiful teenage daughters. I've traveled overseas. I'm the sole bread winner for our family right now. At 17 I was never sure any of this would be possible and its made me very appreciative of everything I've been blessed with. I intend to live to a 100.

As others have said, take care of yourself, listen to the doctors and anything is possible.

 

[enzo]

Enzo,

I'll be 50 in November.(that's scary). At 17 my numbers were probably similar to yours. Although they didn't have anywhere near the kinds of tests and treatments that we have today. My scores now are usually in the 90s-low 100s. I've led a very happy and productive life. I finished college and have worked non-stop ever since. I've been married for 25 years and have 2 beautiful teenage daughters. I've traveled overseas. I'm the sole bread winner for our family right now. At 17 I was never sure any of this would be possible and its made me very appreciative of everything I've been blessed with. I intend to live to a 100.

As others have said, take care of yourself, listen to the doctors and anything is possible.

Enzo,
I know how it feels to be shocked hearing statistics that limit your life plans. But please- ignore what you read and hear and just take care of yourself the very best you can
and live your life to the fullest. I was told my son would probably not live beyond 17 and he is now 44 with no transplant yet! You just can't imagine all the research
being done to help all of tne people with CF! Amazing things are on the horizon, so prepare yourself by taking the best care you can of yourself and following the regiment
your doctor prescribes. The CF doctors are up on everything and you must trust that what they tell you will take you beyond today's predictions!!

Your health seems like it's fantastic right now. I don't see the need to worry so far ahead. Enjoy the present time and worry about that when the time comes. No one can say for sure where medical treatment will be in 20+ years from now. Hopefully it's better than it is now. Over 50% of the CF population today are over 18 years old.

As far as a double lung transplant, the average survival rate is 7 years. Rejection or infection are the most common reasons why people die after an organ transplant. But, just like CF they are still advancing in medicine to help fix these issues for people to live even longer after transplant. There are people with transplants today that are still living after 10 and 15 years.

I had a double lung transplant when I was 15 years old in March 2007. 5 years ago. I've been in stable condition with no problems at all for 4 years.

As Albert Einstein once said "Learn from yesterday, Live for today, and hope for tomorrow."

Hey Bill, awesome news! I'm 32, have been an independent businesswoman all my life (never employed so far), gone to study abroad (in Utah), and am happy with life!

Enzo:

I'm 72 and there are 3 others at the CF Clinic that I attend who are over 70. Last year when I was in the hospital, one of the nurses told me that there had been a patient there (for non CF issues) who had CF and was in his 90's. If you check the Annual Report from CFF, they list someone in mid 80's.

Bill

Hi, you have some very good questions! Try not to let them overwhelm you. The thing I have learned about CF since my older son was diagnosed 21 years ago, is that CF is unpredictable. It is hard to say for certainty where anyone I'll be in the years to come. It is encouraging how much is being done for CF patients with treatment options, medicines and care.

There are many people with CF who are living a long time, many on this site (who will probably reply). Hearing their stories also provides hope for the future. Your numbers are very good! Continue taking good care of yourself and keep asking questions!

Hearing all this has made me feel a sigh of relief. Still kinda nervous about those statistics, but as you all have mentioned, it will be way better technology in the future. Thank you

 

[Mia 65 Roses]

Dudes if I were you I wouldn't worry about dying!! If you know Jesus you will be fine.. No one really knows when we die. Illness or no illness!!

 

[patrish22]

Hi, you have some very good questions! Try not to let them overwhelm you. The thing I have learned about CF since my older son was diagnosed 21 years ago, is that CF is unpredictable. It is hard to say for certainty where anyone I'll be in the years to come. It is encouraging how much is being done for CF patients with treatment options, medicines and care.

There are many people with CF who are living a long time, many on this site (who will probably reply). Hearing their stories also provides hope for the future. Your numbers are very good! Continue taking good care of yourself and keep asking questions!

I want to thank you for bringing up the unpredictability. I was afraid to, feeling I might anger people. It depends on many factors, compliance, your mutation, and so on. My 26 yr old son is doing great, he is a cyclist, enjoys hiking and snowboarding, and recently was hiking Pikes Peak. My daughters (both deceased at 25 & 26) obviously did not. One was always having a difficult time, the other did well until about 2 years before she passed, (was on a transplant list and didn't make it). So important to focus on TODAY! Enjoy the people and things you like to do. Treat each day as a gift. I'm sure there are those who will think I'm being a downer, but I feel its important to accept the realities of this disease. Anyone who is freaking out or having difficulty with fears of the future, speak to a counselor, (I'm sure the cf team has one). What is happening in the world of CF today is so exciting. There is so much to look forward to. Eat well, be compliant with treatments, but most importantly try to be happy and enjoy life as best you can. Looking at the extremes with my children and the differences has taught me so much.

 

[baseballfrank]

so a bunch of this type of things has been on my mind lately. i scored really good on the lung breathing test, which was 104 percent. and im at a good weight.

do a lot of people live long normal lives with cf? are cf people able to live to 80 years old if its in their family ? could you live a long life after a double lung transplant? in 20 years, will everyone survive after a double lung transplant? what do they mean 50% of double lung transplants dont live after 5 years? why is that? im freaking out about this, even though i might not need one in twenty years or so.

There is absolutely no reason to have a fatalistic attitude about CF. Especially now when they are so close to finding a cure for the disease. The things you have to do to improve your chances of living a long healthy normal life is first of all to have a postive attitude. Attitude is everything. Next you MUST take care of yourself and do all your treatments. You MUST exercise, eat right and not abuse your body in any way. CF affects everybody differently. I am 51 and still kicking. My sister died of CF when she was 22. I was always told that I had more severe case of CF then she did. The difference is I took care of myself and my sister did not. I eat right. I work out religiously and take all my meds. Read up on the research that is going on with Vertex. Stay positive and don't let CF defeat you. It sounds like you are fairly young, so the future is extremely bright for you!

 

[windex125]

Hi I will be 58 in Dec and doing well my PFT's are only in loe 50's.. one lung is completely non functioning yet I am doing well. I keep a postive attitude, follow my meds and just take one day at a time. I never thought abt life span ever.My day will come when it comes. Pat 57-CF