Today I broke down...

[Jem]

I wish I could hug you in person. (((HUG))). I understand you fear and sadness but maybe if we older cfers could share what life is like with CF, as you asked, it wouldn't be so scary for you.

Here is what my life is like as an older cfer.
I am 49, with one lung. I lost my lung from chronic bleeding through two operations, one at 19 the other at 40.

I am married 26 years to my high school sweet heart and the mother of three. I am an active volunteer in my community and Parish.

My FEV1 is 49. It was edging down as low as 41 in March of 2006 but that was when I found Cysticfibrosis.com and became an E-Patient and since then my FEV1 has been creeping up to my new high of 49. Through learning from others on this forum I have worked with my doctor and have begun using the Respirtech Incourage Vest, Hypertonic Saline, Tobi & the eflow. I have also increased my exercise routine.

I do what I can to stay healthy and yes, I am not thrilled having to spend 3 hours a day between exercise, vest & treatments but I know if I do not put in this time than I will not have the best chance at being as healthy as I can be for as long as possible.

My faith is central to my life and that is what helps me to keep perspective and purpose.

I do not dwell in the future but live in the present. If I didn't do this then I would not be involved in the many activies that I am involved in. The fear of what might happen would paralyze me from trying new things. Taking one day at a time allows me to be productive and enjoy what I am doing at that moment.

My family is a great support. The kids and my husband try hard to schedule activities around my treatment times. They always make me feel like I am worth the wait.

Cf is part of me. Do I sometimes ponder what my life would be like without it? Sure, but a I also wonder what life would have been like if I was a guy or more athletic or didn't have the family I have. You get the idea. These are passing thoughts...in the end I am content with the lot that was given to me. In act I am more than content...I feel blessed to be living the life that I have. I have great peace and much joy.

I know you know this but in the end we are all going to die. But how many people really think about death or accept its inevidability? In doing so I have made peace with it and can live my life more fully. With that being said I hope I live a long time and with the way I have been feeling and taking care of myself it feels quite possible.

I hope you can get to a place in your life when you find your passion whatever that might be. That you can live with hope and find peace and joy.

I want to be of help. If you have any questions....please ask away. No question is to personal to answer.

 

[Jem]

I wish I could hug you in person. (((HUG))). I understand you fear and sadness but maybe if we older cfers could share what life is like with CF, as you asked, it wouldn't be so scary for you.

Here is what my life is like as an older cfer.
I am 49, with one lung. I lost my lung from chronic bleeding through two operations, one at 19 the other at 40.

I am married 26 years to my high school sweet heart and the mother of three. I am an active volunteer in my community and Parish.

My FEV1 is 49. It was edging down as low as 41 in March of 2006 but that was when I found Cysticfibrosis.com and became an E-Patient and since then my FEV1 has been creeping up to my new high of 49. Through learning from others on this forum I have worked with my doctor and have begun using the Respirtech Incourage Vest, Hypertonic Saline, Tobi & the eflow. I have also increased my exercise routine.

I do what I can to stay healthy and yes, I am not thrilled having to spend 3 hours a day between exercise, vest & treatments but I know if I do not put in this time than I will not have the best chance at being as healthy as I can be for as long as possible.

My faith is central to my life and that is what helps me to keep perspective and purpose.

I do not dwell in the future but live in the present. If I didn't do this then I would not be involved in the many activies that I am involved in. The fear of what might happen would paralyze me from trying new things. Taking one day at a time allows me to be productive and enjoy what I am doing at that moment.

My family is a great support. The kids and my husband try hard to schedule activities around my treatment times. They always make me feel like I am worth the wait.

Cf is part of me. Do I sometimes ponder what my life would be like without it? Sure, but a I also wonder what life would have been like if I was a guy or more athletic or didn't have the family I have. You get the idea. These are passing thoughts...in the end I am content with the lot that was given to me. In act I am more than content...I feel blessed to be living the life that I have. I have great peace and much joy.

I know you know this but in the end we are all going to die. But how many people really think about death or accept its inevidability? In doing so I have made peace with it and can live my life more fully. With that being said I hope I live a long time and with the way I have been feeling and taking care of myself it feels quite possible.

I hope you can get to a place in your life when you find your passion whatever that might be. That you can live with hope and find peace and joy.

I want to be of help. If you have any questions....please ask away. No question is to personal to answer.

 

[Jem]

I wish I could hug you in person. (((HUG))). I understand you fear and sadness but maybe if we older cfers could share what life is like with CF, as you asked, it wouldn't be so scary for you.

Here is what my life is like as an older cfer.
I am 49, with one lung. I lost my lung from chronic bleeding through two operations, one at 19 the other at 40.

I am married 26 years to my high school sweet heart and the mother of three. I am an active volunteer in my community and Parish.

My FEV1 is 49. It was edging down as low as 41 in March of 2006 but that was when I found Cysticfibrosis.com and became an E-Patient and since then my FEV1 has been creeping up to my new high of 49. Through learning from others on this forum I have worked with my doctor and have begun using the Respirtech Incourage Vest, Hypertonic Saline, Tobi & the eflow. I have also increased my exercise routine.

I do what I can to stay healthy and yes, I am not thrilled having to spend 3 hours a day between exercise, vest & treatments but I know if I do not put in this time than I will not have the best chance at being as healthy as I can be for as long as possible.

My faith is central to my life and that is what helps me to keep perspective and purpose.

I do not dwell in the future but live in the present. If I didn't do this then I would not be involved in the many activies that I am involved in. The fear of what might happen would paralyze me from trying new things. Taking one day at a time allows me to be productive and enjoy what I am doing at that moment.

My family is a great support. The kids and my husband try hard to schedule activities around my treatment times. They always make me feel like I am worth the wait.

Cf is part of me. Do I sometimes ponder what my life would be like without it? Sure, but a I also wonder what life would have been like if I was a guy or more athletic or didn't have the family I have. You get the idea. These are passing thoughts...in the end I am content with the lot that was given to me. In act I am more than content...I feel blessed to be living the life that I have. I have great peace and much joy.

I know you know this but in the end we are all going to die. But how many people really think about death or accept its inevidability? In doing so I have made peace with it and can live my life more fully. With that being said I hope I live a long time and with the way I have been feeling and taking care of myself it feels quite possible.

I hope you can get to a place in your life when you find your passion whatever that might be. That you can live with hope and find peace and joy.

I want to be of help. If you have any questions....please ask away. No question is to personal to answer.

 

[Jem]

I wish I could hug you in person. (((HUG))). I understand you fear and sadness but maybe if we older cfers could share what life is like with CF, as you asked, it wouldn't be so scary for you.

Here is what my life is like as an older cfer.
I am 49, with one lung. I lost my lung from chronic bleeding through two operations, one at 19 the other at 40.

I am married 26 years to my high school sweet heart and the mother of three. I am an active volunteer in my community and Parish.

My FEV1 is 49. It was edging down as low as 41 in March of 2006 but that was when I found Cysticfibrosis.com and became an E-Patient and since then my FEV1 has been creeping up to my new high of 49. Through learning from others on this forum I have worked with my doctor and have begun using the Respirtech Incourage Vest, Hypertonic Saline, Tobi & the eflow. I have also increased my exercise routine.

I do what I can to stay healthy and yes, I am not thrilled having to spend 3 hours a day between exercise, vest & treatments but I know if I do not put in this time than I will not have the best chance at being as healthy as I can be for as long as possible.

My faith is central to my life and that is what helps me to keep perspective and purpose.

I do not dwell in the future but live in the present. If I didn't do this then I would not be involved in the many activies that I am involved in. The fear of what might happen would paralyze me from trying new things. Taking one day at a time allows me to be productive and enjoy what I am doing at that moment.

My family is a great support. The kids and my husband try hard to schedule activities around my treatment times. They always make me feel like I am worth the wait.

Cf is part of me. Do I sometimes ponder what my life would be like without it? Sure, but a I also wonder what life would have been like if I was a guy or more athletic or didn't have the family I have. You get the idea. These are passing thoughts...in the end I am content with the lot that was given to me. In act I am more than content...I feel blessed to be living the life that I have. I have great peace and much joy.

I know you know this but in the end we are all going to die. But how many people really think about death or accept its inevidability? In doing so I have made peace with it and can live my life more fully. With that being said I hope I live a long time and with the way I have been feeling and taking care of myself it feels quite possible.

I hope you can get to a place in your life when you find your passion whatever that might be. That you can live with hope and find peace and joy.

I want to be of help. If you have any questions....please ask away. No question is to personal to answer.

 

[Jem]

I wish I could hug you in person. (((HUG))). I understand you fear and sadness but maybe if we older cfers could share what life is like with CF, as you asked, it wouldn't be so scary for you.

Here is what my life is like as an older cfer.
I am 49, with one lung. I lost my lung from chronic bleeding through two operations, one at 19 the other at 40.

I am married 26 years to my high school sweet heart and the mother of three. I am an active volunteer in my community and Parish.

My FEV1 is 49. It was edging down as low as 41 in March of 2006 but that was when I found Cysticfibrosis.com and became an E-Patient and since then my FEV1 has been creeping up to my new high of 49. Through learning from others on this forum I have worked with my doctor and have begun using the Respirtech Incourage Vest, Hypertonic Saline, Tobi & the eflow. I have also increased my exercise routine.

I do what I can to stay healthy and yes, I am not thrilled having to spend 3 hours a day between exercise, vest & treatments but I know if I do not put in this time than I will not have the best chance at being as healthy as I can be for as long as possible.

My faith is central to my life and that is what helps me to keep perspective and purpose.

I do not dwell in the future but live in the present. If I didn't do this then I would not be involved in the many activies that I am involved in. The fear of what might happen would paralyze me from trying new things. Taking one day at a time allows me to be productive and enjoy what I am doing at that moment.

My family is a great support. The kids and my husband try hard to schedule activities around my treatment times. They always make me feel like I am worth the wait.

Cf is part of me. Do I sometimes ponder what my life would be like without it? Sure, but a I also wonder what life would have been like if I was a guy or more athletic or didn't have the family I have. You get the idea. These are passing thoughts...in the end I am content with the lot that was given to me. In act I am more than content...I feel blessed to be living the life that I have. I have great peace and much joy.

I know you know this but in the end we are all going to die. But how many people really think about death or accept its inevidability? In doing so I have made peace with it and can live my life more fully. With that being said I hope I live a long time and with the way I have been feeling and taking care of myself it feels quite possible.

I hope you can get to a place in your life when you find your passion whatever that might be. That you can live with hope and find peace and joy.

I want to be of help. If you have any questions....please ask away. No question is to personal to answer.

 

[lightNlife]

I'm 27 and I've broken down many a time. It helps to have someone with you for moral support. I'm glad your mom was around. My husband is a rock of support for me, and together we face this CF battle head on. There are days when it gets us down, that's for certain. If you'd like to see a short video clip about us and what it's like to manage CF together in our marriage, please check out this:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp">http://www.cfvoice.com/info/ca...le/sickness_health.jsp</a>

 

[lightNlife]

I'm 27 and I've broken down many a time. It helps to have someone with you for moral support. I'm glad your mom was around. My husband is a rock of support for me, and together we face this CF battle head on. There are days when it gets us down, that's for certain. If you'd like to see a short video clip about us and what it's like to manage CF together in our marriage, please check out this:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp">http://www.cfvoice.com/info/ca...le/sickness_health.jsp</a>

 

[lightNlife]

I'm 27 and I've broken down many a time. It helps to have someone with you for moral support. I'm glad your mom was around. My husband is a rock of support for me, and together we face this CF battle head on. There are days when it gets us down, that's for certain. If you'd like to see a short video clip about us and what it's like to manage CF together in our marriage, please check out this:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp">http://www.cfvoice.com/info/ca...le/sickness_health.jsp</a>

 

[lightNlife]

I'm 27 and I've broken down many a time. It helps to have someone with you for moral support. I'm glad your mom was around. My husband is a rock of support for me, and together we face this CF battle head on. There are days when it gets us down, that's for certain. If you'd like to see a short video clip about us and what it's like to manage CF together in our marriage, please check out this:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp">http://www.cfvoice.com/info/ca...le/sickness_health.jsp</a>

 

[lightNlife]

I'm 27 and I've broken down many a time. It helps to have someone with you for moral support. I'm glad your mom was around. My husband is a rock of support for me, and together we face this CF battle head on. There are days when it gets us down, that's for certain. If you'd like to see a short video clip about us and what it's like to manage CF together in our marriage, please check out this:


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp">http://www.cfvoice.com/info/ca...le/sickness_health.jsp</a>

 

[johannaleigh]

Hello Aka2007 ( I don't know your name) I, like others who wrote in, understand what you are going through. I have a story to tell you. 4 years ago my cf started getting worse. My lungs started bleeding when I would have infections 3 or 4 times a year and of course had to go into the hospital. From that point on my functions started going down more rapidly. Then 3 years ago in my second semester in nursing school I got the flu. I had it for 3 weeks when I began bleeding severly and ended up in the icu unit on a ventilator. A week later my functions had dropped to near death levels and the antibotics were having no effect. Now I'm about to be on the transplant list. I wake up most mornings coughing so hard that I choke on the mucus and through up. I have a feeding tube and oxygen. Dosen't this sound like the end? Not necessarilary. This may be the beginning of a life with a healither body. They have made great advances with lung transplant. Sure there's a chance I could die during the surgery, or only live 5 years, but at the hospital I go to several people have been transplanted this year and all of them survived. And now days some people can live ten years and in the future, mabey longer. When a cf patient gets new lungs, the cf dosen;t affect those lungs. The new lungs are healthy and stay healthy, the disease dosen't spread. So if you do get worse, a transplant can be a great thing. You'll be able to breath. Wow, I'm kinda wondering what that's going to feel like? I'll find out soon. And yes I'm afraid of the surgery and of dieing or of not living very long, but it's better than dieing with rotten lungs. I hope this made you or at least someone feel better.

 

[johannaleigh]

Hello Aka2007 ( I don't know your name) I, like others who wrote in, understand what you are going through. I have a story to tell you. 4 years ago my cf started getting worse. My lungs started bleeding when I would have infections 3 or 4 times a year and of course had to go into the hospital. From that point on my functions started going down more rapidly. Then 3 years ago in my second semester in nursing school I got the flu. I had it for 3 weeks when I began bleeding severly and ended up in the icu unit on a ventilator. A week later my functions had dropped to near death levels and the antibotics were having no effect. Now I'm about to be on the transplant list. I wake up most mornings coughing so hard that I choke on the mucus and through up. I have a feeding tube and oxygen. Dosen't this sound like the end? Not necessarilary. This may be the beginning of a life with a healither body. They have made great advances with lung transplant. Sure there's a chance I could die during the surgery, or only live 5 years, but at the hospital I go to several people have been transplanted this year and all of them survived. And now days some people can live ten years and in the future, mabey longer. When a cf patient gets new lungs, the cf dosen;t affect those lungs. The new lungs are healthy and stay healthy, the disease dosen't spread. So if you do get worse, a transplant can be a great thing. You'll be able to breath. Wow, I'm kinda wondering what that's going to feel like? I'll find out soon. And yes I'm afraid of the surgery and of dieing or of not living very long, but it's better than dieing with rotten lungs. I hope this made you or at least someone feel better.

 

[johannaleigh]

Hello Aka2007 ( I don't know your name) I, like others who wrote in, understand what you are going through. I have a story to tell you. 4 years ago my cf started getting worse. My lungs started bleeding when I would have infections 3 or 4 times a year and of course had to go into the hospital. From that point on my functions started going down more rapidly. Then 3 years ago in my second semester in nursing school I got the flu. I had it for 3 weeks when I began bleeding severly and ended up in the icu unit on a ventilator. A week later my functions had dropped to near death levels and the antibotics were having no effect. Now I'm about to be on the transplant list. I wake up most mornings coughing so hard that I choke on the mucus and through up. I have a feeding tube and oxygen. Dosen't this sound like the end? Not necessarilary. This may be the beginning of a life with a healither body. They have made great advances with lung transplant. Sure there's a chance I could die during the surgery, or only live 5 years, but at the hospital I go to several people have been transplanted this year and all of them survived. And now days some people can live ten years and in the future, mabey longer. When a cf patient gets new lungs, the cf dosen;t affect those lungs. The new lungs are healthy and stay healthy, the disease dosen't spread. So if you do get worse, a transplant can be a great thing. You'll be able to breath. Wow, I'm kinda wondering what that's going to feel like? I'll find out soon. And yes I'm afraid of the surgery and of dieing or of not living very long, but it's better than dieing with rotten lungs. I hope this made you or at least someone feel better.

 

[johannaleigh]

Hello Aka2007 ( I don't know your name) I, like others who wrote in, understand what you are going through. I have a story to tell you. 4 years ago my cf started getting worse. My lungs started bleeding when I would have infections 3 or 4 times a year and of course had to go into the hospital. From that point on my functions started going down more rapidly. Then 3 years ago in my second semester in nursing school I got the flu. I had it for 3 weeks when I began bleeding severly and ended up in the icu unit on a ventilator. A week later my functions had dropped to near death levels and the antibotics were having no effect. Now I'm about to be on the transplant list. I wake up most mornings coughing so hard that I choke on the mucus and through up. I have a feeding tube and oxygen. Dosen't this sound like the end? Not necessarilary. This may be the beginning of a life with a healither body. They have made great advances with lung transplant. Sure there's a chance I could die during the surgery, or only live 5 years, but at the hospital I go to several people have been transplanted this year and all of them survived. And now days some people can live ten years and in the future, mabey longer. When a cf patient gets new lungs, the cf dosen;t affect those lungs. The new lungs are healthy and stay healthy, the disease dosen't spread. So if you do get worse, a transplant can be a great thing. You'll be able to breath. Wow, I'm kinda wondering what that's going to feel like? I'll find out soon. And yes I'm afraid of the surgery and of dieing or of not living very long, but it's better than dieing with rotten lungs. I hope this made you or at least someone feel better.

 

[johannaleigh]

Hello Aka2007 ( I don't know your name) I, like others who wrote in, understand what you are going through. I have a story to tell you. 4 years ago my cf started getting worse. My lungs started bleeding when I would have infections 3 or 4 times a year and of course had to go into the hospital. From that point on my functions started going down more rapidly. Then 3 years ago in my second semester in nursing school I got the flu. I had it for 3 weeks when I began bleeding severly and ended up in the icu unit on a ventilator. A week later my functions had dropped to near death levels and the antibotics were having no effect. Now I'm about to be on the transplant list. I wake up most mornings coughing so hard that I choke on the mucus and through up. I have a feeding tube and oxygen. Dosen't this sound like the end? Not necessarilary. This may be the beginning of a life with a healither body. They have made great advances with lung transplant. Sure there's a chance I could die during the surgery, or only live 5 years, but at the hospital I go to several people have been transplanted this year and all of them survived. And now days some people can live ten years and in the future, mabey longer. When a cf patient gets new lungs, the cf dosen;t affect those lungs. The new lungs are healthy and stay healthy, the disease dosen't spread. So if you do get worse, a transplant can be a great thing. You'll be able to breath. Wow, I'm kinda wondering what that's going to feel like? I'll find out soon. And yes I'm afraid of the surgery and of dieing or of not living very long, but it's better than dieing with rotten lungs. I hope this made you or at least someone feel better.

 

[casper]

i know exactly the feeling. im 23 now and it is only in the last year that i have come to terms with having to face up to the fact i have an illness, i have been lucky with my chest for so long and now as i age i think i am getting more infections. i also suffer really badly with my stomach with DIOS. when things get too much for me i get so angry and upset and the only thing that can calm me down is being with my animals, i feel i end up taking out my frustrations of cf on other people.
i think we are brave being able to cope with such an illness and everyone has times when things become too much

 

[casper]

i know exactly the feeling. im 23 now and it is only in the last year that i have come to terms with having to face up to the fact i have an illness, i have been lucky with my chest for so long and now as i age i think i am getting more infections. i also suffer really badly with my stomach with DIOS. when things get too much for me i get so angry and upset and the only thing that can calm me down is being with my animals, i feel i end up taking out my frustrations of cf on other people.
i think we are brave being able to cope with such an illness and everyone has times when things become too much

 

[casper]

i know exactly the feeling. im 23 now and it is only in the last year that i have come to terms with having to face up to the fact i have an illness, i have been lucky with my chest for so long and now as i age i think i am getting more infections. i also suffer really badly with my stomach with DIOS. when things get too much for me i get so angry and upset and the only thing that can calm me down is being with my animals, i feel i end up taking out my frustrations of cf on other people.
i think we are brave being able to cope with such an illness and everyone has times when things become too much

 

[casper]

i know exactly the feeling. im 23 now and it is only in the last year that i have come to terms with having to face up to the fact i have an illness, i have been lucky with my chest for so long and now as i age i think i am getting more infections. i also suffer really badly with my stomach with DIOS. when things get too much for me i get so angry and upset and the only thing that can calm me down is being with my animals, i feel i end up taking out my frustrations of cf on other people.
i think we are brave being able to cope with such an illness and everyone has times when things become too much

 

[casper]

i know exactly the feeling. im 23 now and it is only in the last year that i have come to terms with having to face up to the fact i have an illness, i have been lucky with my chest for so long and now as i age i think i am getting more infections. i also suffer really badly with my stomach with DIOS. when things get too much for me i get so angry and upset and the only thing that can calm me down is being with my animals, i feel i end up taking out my frustrations of cf on other people.
i think we are brave being able to cope with such an illness and everyone has times when things become too much