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Question for the older cfers
- Thread starter kmhbeauty
- Start date
Hi: I recently changed CF centers. At the new center I am one of four CFers over 70. It it theorized that we four have less lung damage than most of the CF population because we have an natural immunity to those bacteria that cause the damage. The center now has funding to further examine and identify whatever that immunity would be. If it is identified the next step would be to duplicate it. That having been said, at age 26 I had surgery to remove part of my stomach (CF related) and about a year later I began a decade of pantreatitis attacks (CF related). Within this time frame, they atempted to reduce the severity of these attacks by another operation. They reinforced my common duct and removed my gall bladder. My years up to age 47 (when I was dx) were not at all healthy. Actually I am more healthy since I was dx. Bill
Hi: I recently changed CF centers. At the new center I am one of four CFers over 70. It it theorized that we four have less lung damage than most of the CF population because we have an natural immunity to those bacteria that cause the damage. The center now has funding to further examine and identify whatever that immunity would be. If it is identified the next step would be to duplicate it. That having been said, at age 26 I had surgery to remove part of my stomach (CF related) and about a year later I began a decade of pantreatitis attacks (CF related). Within this time frame, they atempted to reduce the severity of these attacks by another operation. They reinforced my common duct and removed my gall bladder. My years up to age 47 (when I was dx) were not at all healthy. Actually I am more healthy since I was dx. Bill
Hi, I am a 41 year old female...here is my best piece of advice that I can ever give to a 26 year old. When I was 26 my CF was not even an issue for me. I ignored my coughing and life was grand. I was not healthy but I was def not really sick either. For me..and this is just me...just living life and not anticipating my bad health that would later come was a mental lifesaver (I had great, fun times). Again, I cant stress this enough....live life for today and dont dwell on what is to come...I still try to do this. At the same time try and conserve the lungs you have now (do treatments)...a cure or something close to it is on its way.
Hi, I am a 41 year old female...here is my best piece of advice that I can ever give to a 26 year old. When I was 26 my CF was not even an issue for me. I ignored my coughing and life was grand. I was not healthy but I was def not really sick either. For me..and this is just me...just living life and not anticipating my bad health that would later come was a mental lifesaver (I had great, fun times). Again, I cant stress this enough....live life for today and dont dwell on what is to come...I still try to do this. At the same time try and conserve the lungs you have now (do treatments)...a cure or something close to it is on its way.
Thank you for the great advice and awesome story Bill. Yeah I tend to be a bit carefree but Im starting to see that I need to be more proactive with my disease. I just need to get motivated agin. Sometimes Im on top ofit and then I fall out. Its hard to stay on it if youwere dx later in life. I was at 15, so I lived more then half my life not knowing I had CF. Thank you for the advice, I appriciate it!
Thank you for the great advice and awesome story Bill. Yeah I tend to be a bit carefree but Im starting to see that I need to be more proactive with my disease. I just need to get motivated agin. Sometimes Im on top ofit and then I fall out. Its hard to stay on it if youwere dx later in life. I was at 15, so I lived more then half my life not knowing I had CF. Thank you for the advice, I appriciate it!
imported_Momto2
New member
At 26 I was married and working on my second graduate degree, studying to be an EMT, and doing a veterinary internship. (NUTS, ok, I know that!) I was just started to develop blood sugar problems, a few years earlier had noticed that I didnt really need to take enzymes any more, was developing asthma, and it was one of the more inactive periods of my life though I was riding horses every day.
What I'd wish I'd know. DAILY AEROBIC EXERCISE. I just didnt think I had time for it, and my lungs went downhill. I was also under a huge amount of stress from too many commitments. Too much environmental exposure to inhaled particulates in the vet internship and long cold hours outside (equine).
My lungs had been around 85-90% until then, they dropped to about 75% by the time I was 30 years old.
I started exercising a LOT, training and competed horses professionally, my lungs stabilized.
When we adopted our second child as an infant in 2005, things went south fast from the lack of sleep and constantly having to be "on call". Lung function dropped to 60%.
Fast forward two years, a death in the family, stress, ate too much and put on 25 lbs, stopped riding and exercising completely.
Lung function dropped to 45-50%.
Got my sh*t together in early 2010, started running every day. Up to 55%.
Started triathlon training in mid 2011- lung function to 65%.
During all of this, I was completely compliant with all meds and treatments. I tried every new that came out, but few meds really worked well.
The difference was exercising.
There you have it.
What I'd wish I'd know. DAILY AEROBIC EXERCISE. I just didnt think I had time for it, and my lungs went downhill. I was also under a huge amount of stress from too many commitments. Too much environmental exposure to inhaled particulates in the vet internship and long cold hours outside (equine).
My lungs had been around 85-90% until then, they dropped to about 75% by the time I was 30 years old.
I started exercising a LOT, training and competed horses professionally, my lungs stabilized.
When we adopted our second child as an infant in 2005, things went south fast from the lack of sleep and constantly having to be "on call". Lung function dropped to 60%.
Fast forward two years, a death in the family, stress, ate too much and put on 25 lbs, stopped riding and exercising completely.
Lung function dropped to 45-50%.
Got my sh*t together in early 2010, started running every day. Up to 55%.
Started triathlon training in mid 2011- lung function to 65%.
During all of this, I was completely compliant with all meds and treatments. I tried every new that came out, but few meds really worked well.
The difference was exercising.
There you have it.
imported_Momto2
New member
At 26 I was married and working on my second graduate degree, studying to be an EMT, and doing a veterinary internship. (NUTS, ok, I know that!) I was just started to develop blood sugar problems, a few years earlier had noticed that I didnt really need to take enzymes any more, was developing asthma, and it was one of the more inactive periods of my life though I was riding horses every day.
What I'd wish I'd know. DAILY AEROBIC EXERCISE. I just didnt think I had time for it, and my lungs went downhill. I was also under a huge amount of stress from too many commitments. Too much environmental exposure to inhaled particulates in the vet internship and long cold hours outside (equine).
My lungs had been around 85-90% until then, they dropped to about 75% by the time I was 30 years old.
I started exercising a LOT, training and competed horses professionally, my lungs stabilized.
When we adopted our second child as an infant in 2005, things went south fast from the lack of sleep and constantly having to be "on call". Lung function dropped to 60%.
Fast forward two years, a death in the family, stress, ate too much and put on 25 lbs, stopped riding and exercising completely.
Lung function dropped to 45-50%.
Got my sh*t together in early 2010, started running every day. Up to 55%.
Started triathlon training in mid 2011- lung function to 65%.
During all of this, I was completely compliant with all meds and treatments. I tried every new that came out, but few meds really worked well.
The difference was exercising.
There you have it.
What I'd wish I'd know. DAILY AEROBIC EXERCISE. I just didnt think I had time for it, and my lungs went downhill. I was also under a huge amount of stress from too many commitments. Too much environmental exposure to inhaled particulates in the vet internship and long cold hours outside (equine).
My lungs had been around 85-90% until then, they dropped to about 75% by the time I was 30 years old.
I started exercising a LOT, training and competed horses professionally, my lungs stabilized.
When we adopted our second child as an infant in 2005, things went south fast from the lack of sleep and constantly having to be "on call". Lung function dropped to 60%.
Fast forward two years, a death in the family, stress, ate too much and put on 25 lbs, stopped riding and exercising completely.
Lung function dropped to 45-50%.
Got my sh*t together in early 2010, started running every day. Up to 55%.
Started triathlon training in mid 2011- lung function to 65%.
During all of this, I was completely compliant with all meds and treatments. I tried every new that came out, but few meds really worked well.
The difference was exercising.
There you have it.
Thank you, for sharing! I have always felt the key to live with cf is exercise!! I need to start up again, tomorrow or asap! I ran three times a week for about 6 months and felt amazing! I hope to get back in the grind soon. I too use to ride. I did Hunter/Jumper and three day eventing as a kid and early teen. I miss it so much! Cant afford to ride anymore, but I hope someday to take lessons again! I was dx at 15 but as a kid I swear I never even coughed once! I think being so active with horses, sports, and being outside helped my disease. I was hardly sick as a kid. First time I really got sick was in 8th grade, shortly after got dx.
Thank you, for sharing! I have always felt the key to live with cf is exercise!! I need to start up again, tomorrow or asap! I ran three times a week for about 6 months and felt amazing! I hope to get back in the grind soon. I too use to ride. I did Hunter/Jumper and three day eventing as a kid and early teen. I miss it so much! Cant afford to ride anymore, but I hope someday to take lessons again! I was dx at 15 but as a kid I swear I never even coughed once! I think being so active with horses, sports, and being outside helped my disease. I was hardly sick as a kid. First time I really got sick was in 8th grade, shortly after got dx.
I will be 50 next November. At 26 I had finished college. I got married that year and we moved to Chicago. I was in good health. Still am for the most part. I'm still not a big exercise guy. Meaning I don't hit the gym or stuff. Instead I found things I liked to do to keep active. Hike, Bike or walk the dog. I try not to dwell on tomorrow. I figure everyday's a good one now. Like the others have said the key now is to maintain as much function as possible. The new treatments are getting better and a cure is possible in your life time and hopefully mine too.
My daughters volunteer at a therapeutic riding stable. If there is one nearby maybe that's a way for you to get back into it. I know ours is always looking for help.
My daughters volunteer at a therapeutic riding stable. If there is one nearby maybe that's a way for you to get back into it. I know ours is always looking for help.
I will be 50 next November. At 26 I had finished college. I got married that year and we moved to Chicago. I was in good health. Still am for the most part. I'm still not a big exercise guy. Meaning I don't hit the gym or stuff. Instead I found things I liked to do to keep active. Hike, Bike or walk the dog. I try not to dwell on tomorrow. I figure everyday's a good one now. Like the others have said the key now is to maintain as much function as possible. The new treatments are getting better and a cure is possible in your life time and hopefully mine too.
My daughters volunteer at a therapeutic riding stable. If there is one nearby maybe that's a way for you to get back into it. I know ours is always looking for help.
My daughters volunteer at a therapeutic riding stable. If there is one nearby maybe that's a way for you to get back into it. I know ours is always looking for help.
Great question. At age 23 I had a massive infection, went into right heart failure, was put on oxygen full time and listed for transplant. Here I am still almost 20 years later. Why??? Not because I was transplanted. It was because of exercise. To get ready for transplant I started exercising. In the beginning I could only bike 3 minutes wearing oxygen. Each day I increased by a minute or so. Eventually I was able to wean off O2 and was put on hold for transplant. I returned to work and a fairly "normal" life.
Without exercise I most likely would have been transplanted already. That time is coming closer for me and when it does I will be the strongest I can given my crappy lungs. Why...exercise.
Start small and never give up. PM me if you need advice on how to get started.
Peace,
Steph
Without exercise I most likely would have been transplanted already. That time is coming closer for me and when it does I will be the strongest I can given my crappy lungs. Why...exercise.
Start small and never give up. PM me if you need advice on how to get started.
Peace,
Steph
Great question. At age 23 I had a massive infection, went into right heart failure, was put on oxygen full time and listed for transplant. Here I am still almost 20 years later. Why??? Not because I was transplanted. It was because of exercise. To get ready for transplant I started exercising. In the beginning I could only bike 3 minutes wearing oxygen. Each day I increased by a minute or so. Eventually I was able to wean off O2 and was put on hold for transplant. I returned to work and a fairly "normal" life.
Without exercise I most likely would have been transplanted already. That time is coming closer for me and when it does I will be the strongest I can given my crappy lungs. Why...exercise.
Start small and never give up. PM me if you need advice on how to get started.
Peace,
Steph
Without exercise I most likely would have been transplanted already. That time is coming closer for me and when it does I will be the strongest I can given my crappy lungs. Why...exercise.
Start small and never give up. PM me if you need advice on how to get started.
Peace,
Steph
Thank you for the advice! I plan to start working out again after the move into the new house is over! Im excited to start again because I am seeing it is getting harder for me to do basic things even though I am healthy. I do not like feeling this way at all. I like hearing everyones story, its very interesting! Hope people keep posting and adding their stories!
Thank you for the advice! I plan to start working out again after the move into the new house is over! Im excited to start again because I am seeing it is getting harder for me to do basic things even though I am healthy. I do not like feeling this way at all. I like hearing everyones story, its very interesting! Hope people keep posting and adding their stories!
D
Deb
Guest
I will be 52 this year; was diagnosed at 24. Initially CF was not a part of my daily health but that has certainly changed. I have raised two children and still work full-time but my day also includes vest treatments, nebulizers and meds. I had to have my left lung removed after it became so filled with infection that it kept collapsing.
Long story short.....if I could go back or if I were to give advice to younger people with CF it would definitely be EXERCISE. It may take you a while but find something you can stick with and enjoy. I regret that it took me so long to start a regular exercise program and to put myself ahead of everything else. That was hard when my kids were young. Now, now matter what else I do, I make sure that I fit in exercise. My time at the gym is MY time and it is paying off. I feel better than I ever have and am slowly building my lung function back up again.
Long story short.....if I could go back or if I were to give advice to younger people with CF it would definitely be EXERCISE. It may take you a while but find something you can stick with and enjoy. I regret that it took me so long to start a regular exercise program and to put myself ahead of everything else. That was hard when my kids were young. Now, now matter what else I do, I make sure that I fit in exercise. My time at the gym is MY time and it is paying off. I feel better than I ever have and am slowly building my lung function back up again.
D
Deb
Guest
I will be 52 this year; was diagnosed at 24. Initially CF was not a part of my daily health but that has certainly changed. I have raised two children and still work full-time but my day also includes vest treatments, nebulizers and meds. I had to have my left lung removed after it became so filled with infection that it kept collapsing.
Long story short.....if I could go back or if I were to give advice to younger people with CF it would definitely be EXERCISE. It may take you a while but find something you can stick with and enjoy. I regret that it took me so long to start a regular exercise program and to put myself ahead of everything else. That was hard when my kids were young. Now, now matter what else I do, I make sure that I fit in exercise. My time at the gym is MY time and it is paying off. I feel better than I ever have and am slowly building my lung function back up again.
Long story short.....if I could go back or if I were to give advice to younger people with CF it would definitely be EXERCISE. It may take you a while but find something you can stick with and enjoy. I regret that it took me so long to start a regular exercise program and to put myself ahead of everything else. That was hard when my kids were young. Now, now matter what else I do, I make sure that I fit in exercise. My time at the gym is MY time and it is paying off. I feel better than I ever have and am slowly building my lung function back up again.