not willing to take this till the end

leeza · Aug 9, 2007

hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.

the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.

and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.

sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?

a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.

but for me it`s just that this is never going to stop and i can`t see my aim anywhere...

i feel really lost...

leeza · Aug 9, 2007

hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.

the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.

and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.

sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?

a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.

but for me it`s just that this is never going to stop and i can`t see my aim anywhere...

i feel really lost...

leeza · Aug 9, 2007

hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.

the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.

and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.

sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?

a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.

but for me it`s just that this is never going to stop and i can`t see my aim anywhere...

i feel really lost...

leeza · Aug 9, 2007

hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.

the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.

and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.

sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?

a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.

but for me it`s just that this is never going to stop and i can`t see my aim anywhere...

i feel really lost...

leeza · Aug 9, 2007

hey...i am new to this forum. my name is leeza and i`m 22. since my last hospital visit i cannot go back to my old life anymore. i think my health state is average, not very good, but also not totally bad.
till i was 18 i didn`t bother that much about cf, but with 18 years i caught up pseudomonas, had two i.v. therapies to eradicate it, which didn`t work.
since that age i am much more confronted with everything. before that i always thought i would never end up that bad, my parents also made me believe me i have an easier kind of cf, but by now i do not believe that anymore.
i continued my life , but it wasn`t the same. now every day is spent with physiotherapy and inhalations of colistin and pulmozyme, three times i week i go to the fitness studio. i know that is pretty normal for cf, but i once had a different life and sometimes i can`t believe that this is it...
i have no freetime anymore, because every bit of freetime i don`t spend with other people, i spend with this damn therapy or with sports.
sometimes, when i read the question in some homepages about people`s hobbies i think that i could write " therapy and sports" into that space.
i can`t go away for a´holiday anymore without taking my inhalations with me and it sometimes is really hard to explain that to people you are supposed to share the room with you.

the last years i really tried to keep positive and i did everything i could about the therapy and sports...but still my lung function went down.

and when i think of the fact that cf gets worse with age, i really get to the point where i am not willing to take this anymore, i just cannot imagine it! i am young and i am leading such an active life...i love my job, i love university and actually i love living, but i can`t imagine, giving that up. and i can`t imagine a life without the perspective of a successful job, of maybe having a family...i don`t know what to fight for in these moments and i just can`t believe all this is really happening.

sometimes when i am driving in my car i really get to think " what if I just crashed into a tree? then at least i had a quite normal life until now and wouldn`t have to take the future. do you never have these ideas?

a friend of mine has cancer and it is really really hard, i know- but she at least has a chance that it could be cured...so she has a reason to fight and an aim when she gets out of the hospital.

but for me it`s just that this is never going to stop and i can`t see my aim anywhere...

i feel really lost...

moxie1 · Aug 9, 2007

Hi there...I know where you are coming from and I am so sorry you are struggling right now. But, I did want to remind you that there is always hope. You are young and the future is more promising then it ever has been before! Look on the cf website. The drug pipeline is full. Read on the forums about denufosol and N-acetyl cysteine. Right now it is more exciting then it has ever been in my 32 years. Also, even though it stinks having to do therapy and exercise all of the time just think 1) it's good for you (hey the exercise is good for you even if you didn't have cf) and 2) all of this work you are doing now to stay healthy is going to allow for more time for them to find a control for cf (like insulin for diabetes).

moxie1 · Aug 9, 2007

Hi there...I know where you are coming from and I am so sorry you are struggling right now. But, I did want to remind you that there is always hope. You are young and the future is more promising then it ever has been before! Look on the cf website. The drug pipeline is full. Read on the forums about denufosol and N-acetyl cysteine. Right now it is more exciting then it has ever been in my 32 years. Also, even though it stinks having to do therapy and exercise all of the time just think 1) it's good for you (hey the exercise is good for you even if you didn't have cf) and 2) all of this work you are doing now to stay healthy is going to allow for more time for them to find a control for cf (like insulin for diabetes).

moxie1 · Aug 9, 2007

Hi there...I know where you are coming from and I am so sorry you are struggling right now. But, I did want to remind you that there is always hope. You are young and the future is more promising then it ever has been before! Look on the cf website. The drug pipeline is full. Read on the forums about denufosol and N-acetyl cysteine. Right now it is more exciting then it has ever been in my 32 years. Also, even though it stinks having to do therapy and exercise all of the time just think 1) it's good for you (hey the exercise is good for you even if you didn't have cf) and 2) all of this work you are doing now to stay healthy is going to allow for more time for them to find a control for cf (like insulin for diabetes).

moxie1 · Aug 9, 2007

Hi there...I know where you are coming from and I am so sorry you are struggling right now. But, I did want to remind you that there is always hope. You are young and the future is more promising then it ever has been before! Look on the cf website. The drug pipeline is full. Read on the forums about denufosol and N-acetyl cysteine. Right now it is more exciting then it has ever been in my 32 years. Also, even though it stinks having to do therapy and exercise all of the time just think 1) it's good for you (hey the exercise is good for you even if you didn't have cf) and 2) all of this work you are doing now to stay healthy is going to allow for more time for them to find a control for cf (like insulin for diabetes).

moxie1 · Aug 9, 2007

Hi there...I know where you are coming from and I am so sorry you are struggling right now. But, I did want to remind you that there is always hope. You are young and the future is more promising then it ever has been before! Look on the cf website. The drug pipeline is full. Read on the forums about denufosol and N-acetyl cysteine. Right now it is more exciting then it has ever been in my 32 years. Also, even though it stinks having to do therapy and exercise all of the time just think 1) it's good for you (hey the exercise is good for you even if you didn't have cf) and 2) all of this work you are doing now to stay healthy is going to allow for more time for them to find a control for cf (like insulin for diabetes).

Wheezie · Aug 9, 2007

Hi Leeza, welcome to the forum. I have to tell you that I felt many of the same things you're feeling when I was in my early 20's. I used to have to drive on a two-lane highway and even imagined myself swerving into oncoming traffic (I think the only thing that stopped me from doing that was the thought of hurting someone else). It can be difficult to accept the realities of this disease, especially when you've been told all along that you have a "mild" case and been led to believe that you wouldn't face so many difficult struggles (I too, was told the same thing).

The thing is, just because the disease progresses, doesn't mean you have to stop living your life. You just learn to live it in a different way. I'll be 30 this year. I have a career, a boyfriend...I'm still planning for a happy future. Many people on this site are happily married, some even have children. You don't have to give up living. You don't have to give up the dream of a career and a family. I know it's difficult to accept some of the changes we are all forced to accept with CF. But everyone, even those without CF, go through difficult periods in their lives. We all have challenges. You are not alone.

Have you thought about seeing a therapist? I did that and it really helped me. It was just a safe place to talk to someone unbiased and just let out my feelings. I also now take anti-depressants. I'm not saying medication is the answer, but it did help me to get over some major hurdles. Hang in there...it won't always feel this way.

Wheezie · Aug 9, 2007

Hi Leeza, welcome to the forum. I have to tell you that I felt many of the same things you're feeling when I was in my early 20's. I used to have to drive on a two-lane highway and even imagined myself swerving into oncoming traffic (I think the only thing that stopped me from doing that was the thought of hurting someone else). It can be difficult to accept the realities of this disease, especially when you've been told all along that you have a "mild" case and been led to believe that you wouldn't face so many difficult struggles (I too, was told the same thing).

The thing is, just because the disease progresses, doesn't mean you have to stop living your life. You just learn to live it in a different way. I'll be 30 this year. I have a career, a boyfriend...I'm still planning for a happy future. Many people on this site are happily married, some even have children. You don't have to give up living. You don't have to give up the dream of a career and a family. I know it's difficult to accept some of the changes we are all forced to accept with CF. But everyone, even those without CF, go through difficult periods in their lives. We all have challenges. You are not alone.

Have you thought about seeing a therapist? I did that and it really helped me. It was just a safe place to talk to someone unbiased and just let out my feelings. I also now take anti-depressants. I'm not saying medication is the answer, but it did help me to get over some major hurdles. Hang in there...it won't always feel this way.

Wheezie · Aug 9, 2007

Hi Leeza, welcome to the forum. I have to tell you that I felt many of the same things you're feeling when I was in my early 20's. I used to have to drive on a two-lane highway and even imagined myself swerving into oncoming traffic (I think the only thing that stopped me from doing that was the thought of hurting someone else). It can be difficult to accept the realities of this disease, especially when you've been told all along that you have a "mild" case and been led to believe that you wouldn't face so many difficult struggles (I too, was told the same thing).

The thing is, just because the disease progresses, doesn't mean you have to stop living your life. You just learn to live it in a different way. I'll be 30 this year. I have a career, a boyfriend...I'm still planning for a happy future. Many people on this site are happily married, some even have children. You don't have to give up living. You don't have to give up the dream of a career and a family. I know it's difficult to accept some of the changes we are all forced to accept with CF. But everyone, even those without CF, go through difficult periods in their lives. We all have challenges. You are not alone.

Have you thought about seeing a therapist? I did that and it really helped me. It was just a safe place to talk to someone unbiased and just let out my feelings. I also now take anti-depressants. I'm not saying medication is the answer, but it did help me to get over some major hurdles. Hang in there...it won't always feel this way.

Wheezie · Aug 9, 2007

Hi Leeza, welcome to the forum. I have to tell you that I felt many of the same things you're feeling when I was in my early 20's. I used to have to drive on a two-lane highway and even imagined myself swerving into oncoming traffic (I think the only thing that stopped me from doing that was the thought of hurting someone else). It can be difficult to accept the realities of this disease, especially when you've been told all along that you have a "mild" case and been led to believe that you wouldn't face so many difficult struggles (I too, was told the same thing).

The thing is, just because the disease progresses, doesn't mean you have to stop living your life. You just learn to live it in a different way. I'll be 30 this year. I have a career, a boyfriend...I'm still planning for a happy future. Many people on this site are happily married, some even have children. You don't have to give up living. You don't have to give up the dream of a career and a family. I know it's difficult to accept some of the changes we are all forced to accept with CF. But everyone, even those without CF, go through difficult periods in their lives. We all have challenges. You are not alone.

Have you thought about seeing a therapist? I did that and it really helped me. It was just a safe place to talk to someone unbiased and just let out my feelings. I also now take anti-depressants. I'm not saying medication is the answer, but it did help me to get over some major hurdles. Hang in there...it won't always feel this way.

Wheezie · Aug 9, 2007

Hi Leeza, welcome to the forum. I have to tell you that I felt many of the same things you're feeling when I was in my early 20's. I used to have to drive on a two-lane highway and even imagined myself swerving into oncoming traffic (I think the only thing that stopped me from doing that was the thought of hurting someone else). It can be difficult to accept the realities of this disease, especially when you've been told all along that you have a "mild" case and been led to believe that you wouldn't face so many difficult struggles (I too, was told the same thing).

The thing is, just because the disease progresses, doesn't mean you have to stop living your life. You just learn to live it in a different way. I'll be 30 this year. I have a career, a boyfriend...I'm still planning for a happy future. Many people on this site are happily married, some even have children. You don't have to give up living. You don't have to give up the dream of a career and a family. I know it's difficult to accept some of the changes we are all forced to accept with CF. But everyone, even those without CF, go through difficult periods in their lives. We all have challenges. You are not alone.

Have you thought about seeing a therapist? I did that and it really helped me. It was just a safe place to talk to someone unbiased and just let out my feelings. I also now take anti-depressants. I'm not saying medication is the answer, but it did help me to get over some major hurdles. Hang in there...it won't always feel this way.

DarbSkull · Aug 9, 2007

Hey Leeza, I'm sorry you're having a tough time. 
 
I was diagnosed later than most (29) so the realities of CF hit me all at once. It was quite a shock. My first doc didn't understand how to treat CF at all and I went downhill quickly. I found a CF clinic and my condition improved, but I still was going downhill, just more slowly. Finally I moved and found my current doc. He subscribes to the Danish method of CF treatment which means I do 3 weeks of IV antibiotics every 3 months whether I feel like I need it or not. Basically my doc never lets me get sick. My FEV1 has improved almost 15% since I started seeing him. 
 
I play sports (even when I'm on IVs), I work at least 40 hours a week, and I spend time with my friends and family. I also do my vest twice a day and carry a portable IV around in a bag about 1/3 of my life. I don't travel much, but I never really liked to travel anyway. I like waking up in my own bed. 
 
Would I like to go back to life before I was diagnosed? I dunno. CF is part of who I am. I've always known I was special, I just didn't know it was because I'm a mutant. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am happy now. I feel healthy most of the time. I do know that I know I wouldn't be as happy if I hadn't found my new doc and his aggressive treatment. 
 
In terms of the future, there are always advances in CF treatment. I don't know how close we are to a cure, but I know there are some exciting new treatments. I am just about to start the Denufosol clinical trial, and I'm really excited about the possibilities there. 
 
I'm sorry you are feeling so lost right now. I know your situation can improve. Life with CF isn't easy, but it could definitely be worse. Try to keep your head up and concentrate on the things you can still enjoy. Try not to spend time worrying about the things you might not be able to enjoy at some point in the hopefully distant future. Good luck.

DarbSkull · Aug 9, 2007

Hey Leeza, I'm sorry you're having a tough time. 
 
I was diagnosed later than most (29) so the realities of CF hit me all at once. It was quite a shock. My first doc didn't understand how to treat CF at all and I went downhill quickly. I found a CF clinic and my condition improved, but I still was going downhill, just more slowly. Finally I moved and found my current doc. He subscribes to the Danish method of CF treatment which means I do 3 weeks of IV antibiotics every 3 months whether I feel like I need it or not. Basically my doc never lets me get sick. My FEV1 has improved almost 15% since I started seeing him. 
 
I play sports (even when I'm on IVs), I work at least 40 hours a week, and I spend time with my friends and family. I also do my vest twice a day and carry a portable IV around in a bag about 1/3 of my life. I don't travel much, but I never really liked to travel anyway. I like waking up in my own bed. 
 
Would I like to go back to life before I was diagnosed? I dunno. CF is part of who I am. I've always known I was special, I just didn't know it was because I'm a mutant. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am happy now. I feel healthy most of the time. I do know that I know I wouldn't be as happy if I hadn't found my new doc and his aggressive treatment. 
 
In terms of the future, there are always advances in CF treatment. I don't know how close we are to a cure, but I know there are some exciting new treatments. I am just about to start the Denufosol clinical trial, and I'm really excited about the possibilities there. 
 
I'm sorry you are feeling so lost right now. I know your situation can improve. Life with CF isn't easy, but it could definitely be worse. Try to keep your head up and concentrate on the things you can still enjoy. Try not to spend time worrying about the things you might not be able to enjoy at some point in the hopefully distant future. Good luck.

DarbSkull · Aug 9, 2007

Hey Leeza, I'm sorry you're having a tough time. 
 
I was diagnosed later than most (29) so the realities of CF hit me all at once. It was quite a shock. My first doc didn't understand how to treat CF at all and I went downhill quickly. I found a CF clinic and my condition improved, but I still was going downhill, just more slowly. Finally I moved and found my current doc. He subscribes to the Danish method of CF treatment which means I do 3 weeks of IV antibiotics every 3 months whether I feel like I need it or not. Basically my doc never lets me get sick. My FEV1 has improved almost 15% since I started seeing him. 
 
I play sports (even when I'm on IVs), I work at least 40 hours a week, and I spend time with my friends and family. I also do my vest twice a day and carry a portable IV around in a bag about 1/3 of my life. I don't travel much, but I never really liked to travel anyway. I like waking up in my own bed. 
 
Would I like to go back to life before I was diagnosed? I dunno. CF is part of who I am. I've always known I was special, I just didn't know it was because I'm a mutant. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am happy now. I feel healthy most of the time. I do know that I know I wouldn't be as happy if I hadn't found my new doc and his aggressive treatment. 
 
In terms of the future, there are always advances in CF treatment. I don't know how close we are to a cure, but I know there are some exciting new treatments. I am just about to start the Denufosol clinical trial, and I'm really excited about the possibilities there. 
 
I'm sorry you are feeling so lost right now. I know your situation can improve. Life with CF isn't easy, but it could definitely be worse. Try to keep your head up and concentrate on the things you can still enjoy. Try not to spend time worrying about the things you might not be able to enjoy at some point in the hopefully distant future. Good luck.

DarbSkull · Aug 9, 2007

Hey Leeza, I'm sorry you're having a tough time. 
 
I was diagnosed later than most (29) so the realities of CF hit me all at once. It was quite a shock. My first doc didn't understand how to treat CF at all and I went downhill quickly. I found a CF clinic and my condition improved, but I still was going downhill, just more slowly. Finally I moved and found my current doc. He subscribes to the Danish method of CF treatment which means I do 3 weeks of IV antibiotics every 3 months whether I feel like I need it or not. Basically my doc never lets me get sick. My FEV1 has improved almost 15% since I started seeing him. 
 
I play sports (even when I'm on IVs), I work at least 40 hours a week, and I spend time with my friends and family. I also do my vest twice a day and carry a portable IV around in a bag about 1/3 of my life. I don't travel much, but I never really liked to travel anyway. I like waking up in my own bed. 
 
Would I like to go back to life before I was diagnosed? I dunno. CF is part of who I am. I've always known I was special, I just didn't know it was because I'm a mutant. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am happy now. I feel healthy most of the time. I do know that I know I wouldn't be as happy if I hadn't found my new doc and his aggressive treatment. 
 
In terms of the future, there are always advances in CF treatment. I don't know how close we are to a cure, but I know there are some exciting new treatments. I am just about to start the Denufosol clinical trial, and I'm really excited about the possibilities there. 
 
I'm sorry you are feeling so lost right now. I know your situation can improve. Life with CF isn't easy, but it could definitely be worse. Try to keep your head up and concentrate on the things you can still enjoy. Try not to spend time worrying about the things you might not be able to enjoy at some point in the hopefully distant future. Good luck.

DarbSkull · Aug 9, 2007

Hey Leeza, I'm sorry you're having a tough time. 
 
I was diagnosed later than most (29) so the realities of CF hit me all at once. It was quite a shock. My first doc didn't understand how to treat CF at all and I went downhill quickly. I found a CF clinic and my condition improved, but I still was going downhill, just more slowly. Finally I moved and found my current doc. He subscribes to the Danish method of CF treatment which means I do 3 weeks of IV antibiotics every 3 months whether I feel like I need it or not. Basically my doc never lets me get sick. My FEV1 has improved almost 15% since I started seeing him. 
 
I play sports (even when I'm on IVs), I work at least 40 hours a week, and I spend time with my friends and family. I also do my vest twice a day and carry a portable IV around in a bag about 1/3 of my life. I don't travel much, but I never really liked to travel anyway. I like waking up in my own bed. 
 
Would I like to go back to life before I was diagnosed? I dunno. CF is part of who I am. I've always known I was special, I just didn't know it was because I'm a mutant. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am happy now. I feel healthy most of the time. I do know that I know I wouldn't be as happy if I hadn't found my new doc and his aggressive treatment. 
 
In terms of the future, there are always advances in CF treatment. I don't know how close we are to a cure, but I know there are some exciting new treatments. I am just about to start the Denufosol clinical trial, and I'm really excited about the possibilities there. 
 
I'm sorry you are feeling so lost right now. I know your situation can improve. Life with CF isn't easy, but it could definitely be worse. Try to keep your head up and concentrate on the things you can still enjoy. Try not to spend time worrying about the things you might not be able to enjoy at some point in the hopefully distant future. Good luck.

not willing to take this till the end

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