Looking for advice--Exercise/PF's

countrygal9210

New member
Hi. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I want to give you a look into some of my back ground so you can understand what is going on...
So I am a CF patient and have been since birth. I have always been very active throughout my school days. In elementary I played just about every sport I possibly could. I hated to not be busy every second. In middle school I had to pick a sport and I decided that cheerleading was my best bet. I was more healthier in that sport than any other sport I played. When I hit my freshman year in high school I began to have some breathing issues. It was harder for me to run and keep my breath. I was becoming very asthmatic...I just didn't know it yet. Winter my freshman year i quit cheering (thinking it was the sport causing probs) and played basketball instead. About mid season, I realized it wasn't my activity level and the sport that was a problem. It was that I finally was getting exercised induced asthma. (Asthma runs in both sides of my family.)
Now I will admit I did miss out on med's here and there. I can not deny that..I was teen who was having it rough because I was definately not 'popular' and I was still trying to 'grow a backbone' if you will put it (haha). However, I didn't completely stop everything. I did most of my medications except my vest. I had never needed to use it except when I was sick because I had always been SO active. When sophmore year came things continued. My asthma got worse and my doctor basically played the 'I am the doctor. I know it all' card and told me nothing was wrong. However, right before my junior year, my father tragically passed away and it was TOTALLY unexpected. I had lost a friend just 2 months prior to that so when my dad passed, I didn't not take it well at all. For two weeks I ignored everything. I took my pills here and there, and did my pulmozyme here and there also. I quickly realized what I had done but it was a little too late. I needed a tune up. When school began I wanted to continue playing basketball but my coach was very rude to me and didn't have a care in the world that my dad passed. I could not continue playing for my coach and deal with my worsening asthma. Everything got to the point where I hated to do ANYTHING. Whether it be shopping, playing sports, or just walking down the road and back. I even became isolated for weeks during the winter due to the cold triggering asthma attacks. After 4 years of this, my doctor finally listened and did something to help my asthma. He put me on inhaled albuteral via nebulizer instead of albuteral via inhaler. Since then I can walk long ways and only get slightly breathless. I have had few asthma attacks (which were caused by my advair which they had to take me off of because it was causing alot of problems).
Since then I am now on a competitive cheer team and doing great. I am in the prosess of switching doctors which was a big decision. I thought about it for almost a year, considered it with my family, friends, and even the social worker at my doc office and a few other workers. They all helped me decide that it was time to maybe switch and if it wasnt for me I can always switch back. (2nd opinions never hurt.)
But here is where I am hoping to get advice.
I have a mild case of CF. No one ever really know's I have CF until I tell them and my doctor always said my CF was more in my pancreas than in my lungs. The doc I am switching too told me that I can exercise alot to get my PF's back up to the 100-120's where they used to be just 2 years ago compared to the 80's they were when I left the hospital in Oct. My current doc told me that the asthma prob's I went threw did not cause any harm to me but my new doc said it did. New doc told me by exercising A L O T I could slowly get my pf's up which I pray daily I can. I just can't seem to find the drive. I talked to my family and explained to them that I had been so used to having asthma probs for 4 years that I honestly lost all drive to even go shopping or walk outside in the winter or extreme hot in the summer. I was miserable for so long it's all I can seem to remember. I have so much energy and drive in my heart to get up and just run till I can't run no more <img src="i/expressions/face-icon-small-smile.gif" border="0"> but my body just screams you can't do it. It's so frustrating to have your mind know you can do something now but your body be so used to saying no.
I don't know what to do. I am running out of ideas. I am not a lazy person and I love to busy but I just can't seem to get my body to understand. The competitive team I am on is helping out alot but it's only once, maybe twice a week for a couple of hours. I try walking as much as I possibly can when I go shopping to get myself breathing deeper to help with my pf's and just about anything I can think of to get myself mobile. I am hoping to look forward to children one day and from what I have heard the higher your pf's the better, so this is what is driving me.
I just want to see what some of you other CF patients, etc. can give me for advice. Anything will be accepted!

(I should probably also mention that I am currently having some allergy? problems. I tried to get into my current doc to see him to get this figured out but he just called in a perscrip. for a nasal spray?!)

Thanks so much for the advice and help. It is GREATLY appreciated! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

countrygal9210

New member
Hi. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I want to give you a look into some of my back ground so you can understand what is going on...
So I am a CF patient and have been since birth. I have always been very active throughout my school days. In elementary I played just about every sport I possibly could. I hated to not be busy every second. In middle school I had to pick a sport and I decided that cheerleading was my best bet. I was more healthier in that sport than any other sport I played. When I hit my freshman year in high school I began to have some breathing issues. It was harder for me to run and keep my breath. I was becoming very asthmatic...I just didn't know it yet. Winter my freshman year i quit cheering (thinking it was the sport causing probs) and played basketball instead. About mid season, I realized it wasn't my activity level and the sport that was a problem. It was that I finally was getting exercised induced asthma. (Asthma runs in both sides of my family.)
Now I will admit I did miss out on med's here and there. I can not deny that..I was teen who was having it rough because I was definately not 'popular' and I was still trying to 'grow a backbone' if you will put it (haha). However, I didn't completely stop everything. I did most of my medications except my vest. I had never needed to use it except when I was sick because I had always been SO active. When sophmore year came things continued. My asthma got worse and my doctor basically played the 'I am the doctor. I know it all' card and told me nothing was wrong. However, right before my junior year, my father tragically passed away and it was TOTALLY unexpected. I had lost a friend just 2 months prior to that so when my dad passed, I didn't not take it well at all. For two weeks I ignored everything. I took my pills here and there, and did my pulmozyme here and there also. I quickly realized what I had done but it was a little too late. I needed a tune up. When school began I wanted to continue playing basketball but my coach was very rude to me and didn't have a care in the world that my dad passed. I could not continue playing for my coach and deal with my worsening asthma. Everything got to the point where I hated to do ANYTHING. Whether it be shopping, playing sports, or just walking down the road and back. I even became isolated for weeks during the winter due to the cold triggering asthma attacks. After 4 years of this, my doctor finally listened and did something to help my asthma. He put me on inhaled albuteral via nebulizer instead of albuteral via inhaler. Since then I can walk long ways and only get slightly breathless. I have had few asthma attacks (which were caused by my advair which they had to take me off of because it was causing alot of problems).
Since then I am now on a competitive cheer team and doing great. I am in the prosess of switching doctors which was a big decision. I thought about it for almost a year, considered it with my family, friends, and even the social worker at my doc office and a few other workers. They all helped me decide that it was time to maybe switch and if it wasnt for me I can always switch back. (2nd opinions never hurt.)
But here is where I am hoping to get advice.
I have a mild case of CF. No one ever really know's I have CF until I tell them and my doctor always said my CF was more in my pancreas than in my lungs. The doc I am switching too told me that I can exercise alot to get my PF's back up to the 100-120's where they used to be just 2 years ago compared to the 80's they were when I left the hospital in Oct. My current doc told me that the asthma prob's I went threw did not cause any harm to me but my new doc said it did. New doc told me by exercising A L O T I could slowly get my pf's up which I pray daily I can. I just can't seem to find the drive. I talked to my family and explained to them that I had been so used to having asthma probs for 4 years that I honestly lost all drive to even go shopping or walk outside in the winter or extreme hot in the summer. I was miserable for so long it's all I can seem to remember. I have so much energy and drive in my heart to get up and just run till I can't run no more <img src="i/expressions/face-icon-small-smile.gif" border="0"> but my body just screams you can't do it. It's so frustrating to have your mind know you can do something now but your body be so used to saying no.
I don't know what to do. I am running out of ideas. I am not a lazy person and I love to busy but I just can't seem to get my body to understand. The competitive team I am on is helping out alot but it's only once, maybe twice a week for a couple of hours. I try walking as much as I possibly can when I go shopping to get myself breathing deeper to help with my pf's and just about anything I can think of to get myself mobile. I am hoping to look forward to children one day and from what I have heard the higher your pf's the better, so this is what is driving me.
I just want to see what some of you other CF patients, etc. can give me for advice. Anything will be accepted!

(I should probably also mention that I am currently having some allergy? problems. I tried to get into my current doc to see him to get this figured out but he just called in a perscrip. for a nasal spray?!)

Thanks so much for the advice and help. It is GREATLY appreciated! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

countrygal9210

New member
Hi. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />I want to give you a look into some of my back ground so you can understand what is going on...
<br />So I am a CF patient and have been since birth. I have always been very active throughout my school days. In elementary I played just about every sport I possibly could. I hated to not be busy every second. In middle school I had to pick a sport and I decided that cheerleading was my best bet. I was more healthier in that sport than any other sport I played. When I hit my freshman year in high school I began to have some breathing issues. It was harder for me to run and keep my breath. I was becoming very asthmatic...I just didn't know it yet. Winter my freshman year i quit cheering (thinking it was the sport causing probs) and played basketball instead. About mid season, I realized it wasn't my activity level and the sport that was a problem. It was that I finally was getting exercised induced asthma. (Asthma runs in both sides of my family.)
<br />Now I will admit I did miss out on med's here and there. I can not deny that..I was teen who was having it rough because I was definately not 'popular' and I was still trying to 'grow a backbone' if you will put it (haha). However, I didn't completely stop everything. I did most of my medications except my vest. I had never needed to use it except when I was sick because I had always been SO active. When sophmore year came things continued. My asthma got worse and my doctor basically played the 'I am the doctor. I know it all' card and told me nothing was wrong. However, right before my junior year, my father tragically passed away and it was TOTALLY unexpected. I had lost a friend just 2 months prior to that so when my dad passed, I didn't not take it well at all. For two weeks I ignored everything. I took my pills here and there, and did my pulmozyme here and there also. I quickly realized what I had done but it was a little too late. I needed a tune up. When school began I wanted to continue playing basketball but my coach was very rude to me and didn't have a care in the world that my dad passed. I could not continue playing for my coach and deal with my worsening asthma. Everything got to the point where I hated to do ANYTHING. Whether it be shopping, playing sports, or just walking down the road and back. I even became isolated for weeks during the winter due to the cold triggering asthma attacks. After 4 years of this, my doctor finally listened and did something to help my asthma. He put me on inhaled albuteral via nebulizer instead of albuteral via inhaler. Since then I can walk long ways and only get slightly breathless. I have had few asthma attacks (which were caused by my advair which they had to take me off of because it was causing alot of problems).
<br />Since then I am now on a competitive cheer team and doing great. I am in the prosess of switching doctors which was a big decision. I thought about it for almost a year, considered it with my family, friends, and even the social worker at my doc office and a few other workers. They all helped me decide that it was time to maybe switch and if it wasnt for me I can always switch back. (2nd opinions never hurt.)
<br />But here is where I am hoping to get advice.
<br />I have a mild case of CF. No one ever really know's I have CF until I tell them and my doctor always said my CF was more in my pancreas than in my lungs. The doc I am switching too told me that I can exercise alot to get my PF's back up to the 100-120's where they used to be just 2 years ago compared to the 80's they were when I left the hospital in Oct. My current doc told me that the asthma prob's I went threw did not cause any harm to me but my new doc said it did. New doc told me by exercising A L O T I could slowly get my pf's up which I pray daily I can. I just can't seem to find the drive. I talked to my family and explained to them that I had been so used to having asthma probs for 4 years that I honestly lost all drive to even go shopping or walk outside in the winter or extreme hot in the summer. I was miserable for so long it's all I can seem to remember. I have so much energy and drive in my heart to get up and just run till I can't run no more <img src="i/expressions/face-icon-small-smile.gif" border="0"> but my body just screams you can't do it. It's so frustrating to have your mind know you can do something now but your body be so used to saying no.
<br />I don't know what to do. I am running out of ideas. I am not a lazy person and I love to busy but I just can't seem to get my body to understand. The competitive team I am on is helping out alot but it's only once, maybe twice a week for a couple of hours. I try walking as much as I possibly can when I go shopping to get myself breathing deeper to help with my pf's and just about anything I can think of to get myself mobile. I am hoping to look forward to children one day and from what I have heard the higher your pf's the better, so this is what is driving me.
<br />I just want to see what some of you other CF patients, etc. can give me for advice. Anything will be accepted!
<br />
<br />(I should probably also mention that I am currently having some allergy? problems. I tried to get into my current doc to see him to get this figured out but he just called in a perscrip. for a nasal spray?!)
<br />
<br />Thanks so much for the advice and help. It is GREATLY appreciated! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mag6125

New member
I know exactly how you feel, I use to be extremely active in marching band, softball, ice hockey in high school and when I went to college I got really sick and had to give everything up. Now I'm waiting for a lung transplant and can't even walk long distances without getting completely out of breath and tired and its so frustrating so I basically do nothing. The hard thing is before transplant they want you to exercise as much as possible to be in the best shape you can for surgery. So even though I know I need to workout some how I still have trouble motivating myself to do it. One thing I can suggest that you can even do in winter is try getting a stationary bike you can use in the house. Or I think they make some type of stand you can use with a normal bike to make it stationary. I do that while watching tv and its not too bad. We also have a treadmill but that's a hassle cuz I have to move my oxygen to do it. I also have small 5 lb hand weights to do some upper body exercises. I've heard a lot of people say Yoga is really good both for flexibility and their breathing which might also benefit your cheerleading. Whatever you do don't give up, even if you only have mild lung symptoms now its important to stay as active as possible and do all the preventative stuff you can to keep it that way. Good luck with cheerleading and if you want to pm me here for look me up on facebook feel free. Shelly Green mag6125@yahoo.com
 

mag6125

New member
I know exactly how you feel, I use to be extremely active in marching band, softball, ice hockey in high school and when I went to college I got really sick and had to give everything up. Now I'm waiting for a lung transplant and can't even walk long distances without getting completely out of breath and tired and its so frustrating so I basically do nothing. The hard thing is before transplant they want you to exercise as much as possible to be in the best shape you can for surgery. So even though I know I need to workout some how I still have trouble motivating myself to do it. One thing I can suggest that you can even do in winter is try getting a stationary bike you can use in the house. Or I think they make some type of stand you can use with a normal bike to make it stationary. I do that while watching tv and its not too bad. We also have a treadmill but that's a hassle cuz I have to move my oxygen to do it. I also have small 5 lb hand weights to do some upper body exercises. I've heard a lot of people say Yoga is really good both for flexibility and their breathing which might also benefit your cheerleading. Whatever you do don't give up, even if you only have mild lung symptoms now its important to stay as active as possible and do all the preventative stuff you can to keep it that way. Good luck with cheerleading and if you want to pm me here for look me up on facebook feel free. Shelly Green mag6125@yahoo.com
 

mag6125

New member
I know exactly how you feel, I use to be extremely active in marching band, softball, ice hockey in high school and when I went to college I got really sick and had to give everything up. Now I'm waiting for a lung transplant and can't even walk long distances without getting completely out of breath and tired and its so frustrating so I basically do nothing. The hard thing is before transplant they want you to exercise as much as possible to be in the best shape you can for surgery. So even though I know I need to workout some how I still have trouble motivating myself to do it. One thing I can suggest that you can even do in winter is try getting a stationary bike you can use in the house. Or I think they make some type of stand you can use with a normal bike to make it stationary. I do that while watching tv and its not too bad. We also have a treadmill but that's a hassle cuz I have to move my oxygen to do it. I also have small 5 lb hand weights to do some upper body exercises. I've heard a lot of people say Yoga is really good both for flexibility and their breathing which might also benefit your cheerleading. Whatever you do don't give up, even if you only have mild lung symptoms now its important to stay as active as possible and do all the preventative stuff you can to keep it that way. Good luck with cheerleading and if you want to pm me here for look me up on facebook feel free. Shelly Green mag6125@yahoo.com
 
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