I don't post on here regularly so for those who haven't read my story here it is in a nutshell...i am a 25 year old male with cf...i was diagnosed very late, 20 years old, and even after diagnosis was reluctant to seek help from a specialist...after my first post i was convinced be many positive stories and the stories of great quality of life to finally seek out help...i found dr. riker who practices out of long beach memorial...he has been a true god send...i could never ask for more in a doctor, he is incredible...after my first tune up with him early this year in february i had never felt better...i was breathing amazingly and gaining weight right on track...in late may i started to plateau my progression and started coughing up mucus again...last month i went in for my second tune up expecting the same results...boy was i wrong...i cleared the infection pretty quickly but my o2 saturation wasn't recovering...we decided because of the absence of infection to still release me and hope the stamina would come with time...this past tuesday i went to clinic for another follow up and all the numbers were bad again...i was expecting that because of my fatigue level during excercise...i live in southern california and the fires have been near where i live, so that could have played a part in it but my doc things my lungs are just failing fast...we talked about transplant and i'm up for it just wanted some input from you guys...anything you know or have heard...just anything...knowledge is power and i'm asking you guys to give me that power...thanks to all in advance for the support and info...good luck to everyone and remember "just breathe"....Jeff
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I need some input and support desperately!!!
- Thread starter breathe7
- Start date
I don't post on here regularly so for those who haven't read my story here it is in a nutshell...i am a 25 year old male with cf...i was diagnosed very late, 20 years old, and even after diagnosis was reluctant to seek help from a specialist...after my first post i was convinced be many positive stories and the stories of great quality of life to finally seek out help...i found dr. riker who practices out of long beach memorial...he has been a true god send...i could never ask for more in a doctor, he is incredible...after my first tune up with him early this year in february i had never felt better...i was breathing amazingly and gaining weight right on track...in late may i started to plateau my progression and started coughing up mucus again...last month i went in for my second tune up expecting the same results...boy was i wrong...i cleared the infection pretty quickly but my o2 saturation wasn't recovering...we decided because of the absence of infection to still release me and hope the stamina would come with time...this past tuesday i went to clinic for another follow up and all the numbers were bad again...i was expecting that because of my fatigue level during excercise...i live in southern california and the fires have been near where i live, so that could have played a part in it but my doc things my lungs are just failing fast...we talked about transplant and i'm up for it just wanted some input from you guys...anything you know or have heard...just anything...knowledge is power and i'm asking you guys to give me that power...thanks to all in advance for the support and info...good luck to everyone and remember "just breathe"....Jeff
I don't post on here regularly so for those who haven't read my story here it is in a nutshell...i am a 25 year old male with cf...i was diagnosed very late, 20 years old, and even after diagnosis was reluctant to seek help from a specialist...after my first post i was convinced be many positive stories and the stories of great quality of life to finally seek out help...i found dr. riker who practices out of long beach memorial...he has been a true god send...i could never ask for more in a doctor, he is incredible...after my first tune up with him early this year in february i had never felt better...i was breathing amazingly and gaining weight right on track...in late may i started to plateau my progression and started coughing up mucus again...last month i went in for my second tune up expecting the same results...boy was i wrong...i cleared the infection pretty quickly but my o2 saturation wasn't recovering...we decided because of the absence of infection to still release me and hope the stamina would come with time...this past tuesday i went to clinic for another follow up and all the numbers were bad again...i was expecting that because of my fatigue level during excercise...i live in southern california and the fires have been near where i live, so that could have played a part in it but my doc things my lungs are just failing fast...we talked about transplant and i'm up for it just wanted some input from you guys...anything you know or have heard...just anything...knowledge is power and i'm asking you guys to give me that power...thanks to all in advance for the support and info...good luck to everyone and remember "just breathe"....Jeff
I don't post on here regularly so for those who haven't read my story here it is in a nutshell...i am a 25 year old male with cf...i was diagnosed very late, 20 years old, and even after diagnosis was reluctant to seek help from a specialist...after my first post i was convinced be many positive stories and the stories of great quality of life to finally seek out help...i found dr. riker who practices out of long beach memorial...he has been a true god send...i could never ask for more in a doctor, he is incredible...after my first tune up with him early this year in february i had never felt better...i was breathing amazingly and gaining weight right on track...in late may i started to plateau my progression and started coughing up mucus again...last month i went in for my second tune up expecting the same results...boy was i wrong...i cleared the infection pretty quickly but my o2 saturation wasn't recovering...we decided because of the absence of infection to still release me and hope the stamina would come with time...this past tuesday i went to clinic for another follow up and all the numbers were bad again...i was expecting that because of my fatigue level during excercise...i live in southern california and the fires have been near where i live, so that could have played a part in it but my doc things my lungs are just failing fast...we talked about transplant and i'm up for it just wanted some input from you guys...anything you know or have heard...just anything...knowledge is power and i'm asking you guys to give me that power...thanks to all in advance for the support and info...good luck to everyone and remember "just breathe"....Jeff
I don't post on here regularly so for those who haven't read my story here it is in a nutshell...i am a 25 year old male with cf...i was diagnosed very late, 20 years old, and even after diagnosis was reluctant to seek help from a specialist...after my first post i was convinced be many positive stories and the stories of great quality of life to finally seek out help...i found dr. riker who practices out of long beach memorial...he has been a true god send...i could never ask for more in a doctor, he is incredible...after my first tune up with him early this year in february i had never felt better...i was breathing amazingly and gaining weight right on track...in late may i started to plateau my progression and started coughing up mucus again...last month i went in for my second tune up expecting the same results...boy was i wrong...i cleared the infection pretty quickly but my o2 saturation wasn't recovering...we decided because of the absence of infection to still release me and hope the stamina would come with time...this past tuesday i went to clinic for another follow up and all the numbers were bad again...i was expecting that because of my fatigue level during excercise...i live in southern california and the fires have been near where i live, so that could have played a part in it but my doc things my lungs are just failing fast...we talked about transplant and i'm up for it just wanted some input from you guys...anything you know or have heard...just anything...knowledge is power and i'm asking you guys to give me that power...thanks to all in advance for the support and info...good luck to everyone and remember "just breathe"....Jeff
Lance2020x
New member
Hey Jeff, what treatments are you doing? Are you doing any therapies/vest etc.?
Lance2020x
New member
Hey Jeff, what treatments are you doing? Are you doing any therapies/vest etc.?
Lance2020x
New member
Hey Jeff, what treatments are you doing? Are you doing any therapies/vest etc.?
Lance2020x
New member
Hey Jeff, what treatments are you doing? Are you doing any therapies/vest etc.?
Lance2020x
New member
Hey Jeff, what treatments are you doing? Are you doing any therapies/vest etc.?
One thing with CF is it can be unpredictable.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
One thing with CF is it can be unpredictable.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
One thing with CF is it can be unpredictable.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
One thing with CF is it can be unpredictable.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
Sometimes when you just think there is any chance of bouncing back you do.
What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
To help determine exactly where you fall in the line of health issues etc.
One thing with CF is it can be unpredictable.
<br />
<br />Sometimes when you just think there is any chance of bouncing back you do.
<br />
<br />What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
<br />
<br />I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
<br />
<br />I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
<br />
<br />To help determine exactly where you fall in the line of health issues etc.
<br />
<br />
<br />Sometimes when you just think there is any chance of bouncing back you do.
<br />
<br />What is your maintenance routine? Meds, treatments, exercise? Have you checked 02 sats when exercising?
<br />
<br />I know for me that medically they cant do much more. The only thing left BESIDES tx (which we havent started the bowl rolling on) is exercise. This not only helps the lungs, but conditions the rest of the body to help the lungs when they just cant handle a lot anymore.
<br />
<br />I am not your doctor so I am not saying that you are or are not in need of a transplant, but that is what evaluations for tx are for.
<br />
<br />To help determine exactly where you fall in the line of health issues etc.
<br />
First off thanks for such quick responses...my inhaled treatments are albuterol twice a day, pulmozyme/dornase twice a day, and tobi twice a day every other month...airway clearance i use the acapella routine with huff coughs...pills i take are aquadeks(multivitamin), prevacid(antacid), peryactin(appetite stimulant), ultrase mt 20(pancreatic supplement, and have recently added this week prednisone 20mg twice a day...my o2 sats during excercise are terrible 78-81 and at rest i can get to 92 on a good day...the scariest part this time for me is the o2 sats because my lungs are clear of mucus but i'm not getting my sats back like i did in the past...my excercise has really diminshed recently with these struggles...
First off thanks for such quick responses...my inhaled treatments are albuterol twice a day, pulmozyme/dornase twice a day, and tobi twice a day every other month...airway clearance i use the acapella routine with huff coughs...pills i take are aquadeks(multivitamin), prevacid(antacid), peryactin(appetite stimulant), ultrase mt 20(pancreatic supplement, and have recently added this week prednisone 20mg twice a day...my o2 sats during excercise are terrible 78-81 and at rest i can get to 92 on a good day...the scariest part this time for me is the o2 sats because my lungs are clear of mucus but i'm not getting my sats back like i did in the past...my excercise has really diminshed recently with these struggles...
First off thanks for such quick responses...my inhaled treatments are albuterol twice a day, pulmozyme/dornase twice a day, and tobi twice a day every other month...airway clearance i use the acapella routine with huff coughs...pills i take are aquadeks(multivitamin), prevacid(antacid), peryactin(appetite stimulant), ultrase mt 20(pancreatic supplement, and have recently added this week prednisone 20mg twice a day...my o2 sats during excercise are terrible 78-81 and at rest i can get to 92 on a good day...the scariest part this time for me is the o2 sats because my lungs are clear of mucus but i'm not getting my sats back like i did in the past...my excercise has really diminshed recently with these struggles...
First off thanks for such quick responses...my inhaled treatments are albuterol twice a day, pulmozyme/dornase twice a day, and tobi twice a day every other month...airway clearance i use the acapella routine with huff coughs...pills i take are aquadeks(multivitamin), prevacid(antacid), peryactin(appetite stimulant), ultrase mt 20(pancreatic supplement, and have recently added this week prednisone 20mg twice a day...my o2 sats during excercise are terrible 78-81 and at rest i can get to 92 on a good day...the scariest part this time for me is the o2 sats because my lungs are clear of mucus but i'm not getting my sats back like i did in the past...my excercise has really diminshed recently with these struggles...
First off thanks for such quick responses...my inhaled treatments are albuterol twice a day, pulmozyme/dornase twice a day, and tobi twice a day every other month...airway clearance i use the acapella routine with huff coughs...pills i take are aquadeks(multivitamin), prevacid(antacid), peryactin(appetite stimulant), ultrase mt 20(pancreatic supplement, and have recently added this week prednisone 20mg twice a day...my o2 sats during excercise are terrible 78-81 and at rest i can get to 92 on a good day...the scariest part this time for me is the o2 sats because my lungs are clear of mucus but i'm not getting my sats back like i did in the past...my excercise has really diminshed recently with these struggles...