If you could go back in time to the day you were diagnosed...

GorimGT · Aug 30, 2011

Hello everyone, This is my first post. Nine months ago, I started dating a very dear friend of mine. I've known for a long time that she has CF, but until we began sharing our lives together, I never fully understood or appreciated the strength and resolution it takes to carry on a normal life while battling a disease such as this. I stand beside her every day and help in any tiny way I can, but I often feel helpless, and I want to do more for her. I've searched these forums dozens and dozens of times over the past year, and I've found a lot of really good information. I really can't thank you enough for sharing on these forums; it has made a world of difference to both of us. If I can, I'd like to ask another favor. My question is this: If you could go back in time to the day you were diagnosed, and tell yourself one thing, what would it be? What I mean to say is; what "miracle" discoveries have you made over the years that have had the greatest impact on your health, or your day-to-day comfort? By the way, my GF is 25 and lives in Maine. The common issues she struggles with are; - Pulmonary Exacerbations - Digestive Irregularity and Discomfort - Dry Skin - Itchy Feet and Hands - Minor, but frequent nosebleeds - Post-Antibiotic Yeast Infections - Frequent, but temporary fevers (usually 101-102 degrees, and only last a few hours) - Pleurisy Also, what are your thoughts, feelings, or your personal experience with: - Cool Vapor Humidifiers (I know hot vapor are strictly forbidden) - Air Washers (Purified humidifiers -- purifies water before vaporizing) - Probiotics (Lactobacillus GG, or any others) - Vitamin Supplements (Vitamin D, or any others) Even if nobody replies to this post, thank you all so much for sharing. This forum has already been an amazing help. Sincerely, - David

GorimGT · Aug 30, 2011

Hello everyone, This is my first post. Nine months ago, I started dating a very dear friend of mine. I've known for a long time that she has CF, but until we began sharing our lives together, I never fully understood or appreciated the strength and resolution it takes to carry on a normal life while battling a disease such as this. I stand beside her every day and help in any tiny way I can, but I often feel helpless, and I want to do more for her. I've searched these forums dozens and dozens of times over the past year, and I've found a lot of really good information. I really can't thank you enough for sharing on these forums; it has made a world of difference to both of us. If I can, I'd like to ask another favor. My question is this: If you could go back in time to the day you were diagnosed, and tell yourself one thing, what would it be? What I mean to say is; what "miracle" discoveries have you made over the years that have had the greatest impact on your health, or your day-to-day comfort? By the way, my GF is 25 and lives in Maine. The common issues she struggles with are; - Pulmonary Exacerbations - Digestive Irregularity and Discomfort - Dry Skin - Itchy Feet and Hands - Minor, but frequent nosebleeds - Post-Antibiotic Yeast Infections - Frequent, but temporary fevers (usually 101-102 degrees, and only last a few hours) - Pleurisy Also, what are your thoughts, feelings, or your personal experience with: - Cool Vapor Humidifiers (I know hot vapor are strictly forbidden) - Air Washers (Purified humidifiers -- purifies water before vaporizing) - Probiotics (Lactobacillus GG, or any others) - Vitamin Supplements (Vitamin D, or any others) Even if nobody replies to this post, thank you all so much for sharing. This forum has already been an amazing help. Sincerely, - David

GorimGT · Aug 30, 2011

Hello everyone, This is my first post. Nine months ago, I started dating a very dear friend of mine. I've known for a long time that she has CF, but until we began sharing our lives together, I never fully understood or appreciated the strength and resolution it takes to carry on a normal life while battling a disease such as this. I stand beside her every day and help in any tiny way I can, but I often feel helpless, and I want to do more for her. I've searched these forums dozens and dozens of times over the past year, and I've found a lot of really good information. I really can't thank you enough for sharing on these forums; it has made a world of difference to both of us. If I can, I'd like to ask another favor. My question is this: If you could go back in time to the day you were diagnosed, and tell yourself one thing, what would it be? What I mean to say is; what "miracle" discoveries have you made over the years that have had the greatest impact on your health, or your day-to-day comfort? By the way, my GF is 25 and lives in Maine. The common issues she struggles with are; - Pulmonary Exacerbations - Digestive Irregularity and Discomfort - Dry Skin - Itchy Feet and Hands - Minor, but frequent nosebleeds - Post-Antibiotic Yeast Infections - Frequent, but temporary fevers (usually 101-102 degrees, and only last a few hours) - Pleurisy Also, what are your thoughts, feelings, or your personal experience with: - Cool Vapor Humidifiers (I know hot vapor are strictly forbidden) - Air Washers (Purified humidifiers -- purifies water before vaporizing) - Probiotics (Lactobacillus GG, or any others) - Vitamin Supplements (Vitamin D, or any others) Even if nobody replies to this post, thank you all so much for sharing. This forum has already been an amazing help. Sincerely, - David

welshwitch · Aug 31, 2011

Well, I was diagnosed at 9 months....but to my young self, I would say:

*Everything will be OK!
*CF will never hold you back from anything, but it will define a small part of you. But not all of you!
*You have an awesome life in store
*Don't worry too much about statistics, what you find online...everyone's case of CF is different, just like we have different hair color and eyes
*You are capable of much more than you ever thought possible

welshwitch · Aug 31, 2011

Well, I was diagnosed at 9 months....but to my young self, I would say:

*Everything will be OK!
*CF will never hold you back from anything, but it will define a small part of you. But not all of you!
*You have an awesome life in store
*Don't worry too much about statistics, what you find online...everyone's case of CF is different, just like we have different hair color and eyes
*You are capable of much more than you ever thought possible

welshwitch · Aug 31, 2011

Well, I was diagnosed at 9 months....but to my young self, I would say:
 
 *Everything will be OK!
 *CF will never hold you back from anything, but it will define a small part of you. But not all of you!
 *You have an awesome life in store
 *Don't worry too much about statistics, what you find online...everyone's case of CF is different, just like we have different hair color and eyes
 *You are capable of much more than you ever thought possible

beautifulsoul · Sep 3, 2011

I was diagnosed very young as well at 7 months. To my little soul back then...

-BELIEVE. Never give up. Fight back. You have so much to give and so much to accomplish.
-In the end, everything is what it is. Everything that happened made you the person you are.
-Be yourself. People love you for YOU.
-Enjoy life. Don't sweat the small stuff.
-When you want something bad enough, dedicate your life to it. (time, effort, attention) It's far more rewarding.
-Do what you love. Spend time with the people you love.
-PROVE EVERYONE WRONG.

~Many impossible things have been accomplished by those who refuse to quit~

beautifulsoul · Sep 3, 2011

I was diagnosed very young as well at 7 months. To my little soul back then...

-BELIEVE. Never give up. Fight back. You have so much to give and so much to accomplish.
-In the end, everything is what it is. Everything that happened made you the person you are.
-Be yourself. People love you for YOU.
-Enjoy life. Don't sweat the small stuff.
-When you want something bad enough, dedicate your life to it. (time, effort, attention) It's far more rewarding.
-Do what you love. Spend time with the people you love.
-PROVE EVERYONE WRONG.

~Many impossible things have been accomplished by those who refuse to quit~

beautifulsoul · Sep 3, 2011

I was diagnosed very young as well at 7 months. To my little soul back then...
 
 -BELIEVE. Never give up. Fight back. You have so much to give and so much to accomplish.
 -In the end, everything is what it is. Everything that happened made you the person you are.
 -Be yourself. People love you for YOU.
 -Enjoy life. Don't sweat the small stuff.
 -When you want something bad enough, dedicate your life to it. (time, effort, attention) It's far more rewarding.
 -Do what you love. Spend time with the people you love.
 -PROVE EVERYONE WRONG.
 
 
 ~Many impossible things have been accomplished by those who refuse to quit~

JustDucky · Sep 3, 2011

I was actually a late diagnosis....at 33, nearly 7 years ago. To be honest, I feel that my "battle" with this disease is still fairly new to me if that makes any sense. I often reflect about my life "pre-CF" and think how much easier it was without all of these treatments and preventative care, even though I was sick often. I then think about how lucky I was to be finally diagnosed and to be given the proper care that I was lacking for my entire life and have to believe that because of this, I will live longer than I would if CF hadn't been diagnosed. I was actually somewhat relieved to finally have a name put to my symptoms that were puzzling so many, especially me. The shock of it set in later.
-In the years since my diagnosis, I am still learning something new about CF regularly. Education is key to any illness and I firmly believe that knowledge is power. I find that the more I know walking into my appointments, the better it goes. My doctor and I have a partnership in this, I have never felt like I was ever in the dark about my treatment, prognosis, etc. I guess what I am saying, is never stop learning even when you think you know enough, there is always something new in the works.
-CF is life changing but it doesn't mean that you should crawl in a corner and stay there. Live, live as much as you can. I won't lie, it was really hard for me to accept CF, I was already dealing with terrible issues on the respiratory front, my diaphragm was not functioning well (docs had no explanation as far as cause) and I needed BiPAP, O2 and finally a vent to save my life. The addition of a CF diagnosis sent my mind and soul reeling, I wondered how I would cope with all of the added treatments to my already complicated day. Eventually, things just fell into a routine.My message: with time, acceptance gets better with many twists and turns in between. It's okay to be upset and even depressed at times, but don't get too comfortable in that dark place. Find the fire in your life and keep it going.

As far as your questions regarding supplements etc, I take them. I take vit A, D and E (not K because I have had blood clots in my lungs and am on Coumadin which would be rendered useless if I took vit K) as well as iron (severe anemia), folate and thiamin. Lactobacillus is a really good idea, I take that every time I am on IV antibiotics as I get yeast infections often and that seems to help. I don't use cool vaporizers of any kind so I can't help you as far as advice there goes.
You listed that your GF gets pleurisy...unfortunately, I also get that often and it hurts. As if simply coughing were bad enough, pleurisy makes you see stars, the whole galaxy with just breathing....coughing, forget it....terrible. I have been put on steroids to help with the inflammation and I use ibuprofen regularly for this type of pain. What does she do for relief? I also stand in a hot shower with the stream directed to the areas of my lungs that are giving me the most problem.

I to am very thankful for this site. When I was diagnosed, I was lost.....I didn't know anyone else with CF and was still in shock from my diagnosis as I thought it was just an infant/early childhood disease, not something that was diagnosed so late in life. Because of this site, I have found many others who share similar stories and who have similar struggles that a person without CF could possibly understand. I hope you continue to visit this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn 39 w/CF

JustDucky · Sep 3, 2011

I was actually a late diagnosis....at 33, nearly 7 years ago. To be honest, I feel that my "battle" with this disease is still fairly new to me if that makes any sense. I often reflect about my life "pre-CF" and think how much easier it was without all of these treatments and preventative care, even though I was sick often. I then think about how lucky I was to be finally diagnosed and to be given the proper care that I was lacking for my entire life and have to believe that because of this, I will live longer than I would if CF hadn't been diagnosed. I was actually somewhat relieved to finally have a name put to my symptoms that were puzzling so many, especially me. The shock of it set in later.
-In the years since my diagnosis, I am still learning something new about CF regularly. Education is key to any illness and I firmly believe that knowledge is power. I find that the more I know walking into my appointments, the better it goes. My doctor and I have a partnership in this, I have never felt like I was ever in the dark about my treatment, prognosis, etc. I guess what I am saying, is never stop learning even when you think you know enough, there is always something new in the works.
-CF is life changing but it doesn't mean that you should crawl in a corner and stay there. Live, live as much as you can. I won't lie, it was really hard for me to accept CF, I was already dealing with terrible issues on the respiratory front, my diaphragm was not functioning well (docs had no explanation as far as cause) and I needed BiPAP, O2 and finally a vent to save my life. The addition of a CF diagnosis sent my mind and soul reeling, I wondered how I would cope with all of the added treatments to my already complicated day. Eventually, things just fell into a routine.My message: with time, acceptance gets better with many twists and turns in between. It's okay to be upset and even depressed at times, but don't get too comfortable in that dark place. Find the fire in your life and keep it going.

As far as your questions regarding supplements etc, I take them. I take vit A, D and E (not K because I have had blood clots in my lungs and am on Coumadin which would be rendered useless if I took vit K) as well as iron (severe anemia), folate and thiamin. Lactobacillus is a really good idea, I take that every time I am on IV antibiotics as I get yeast infections often and that seems to help. I don't use cool vaporizers of any kind so I can't help you as far as advice there goes.
You listed that your GF gets pleurisy...unfortunately, I also get that often and it hurts. As if simply coughing were bad enough, pleurisy makes you see stars, the whole galaxy with just breathing....coughing, forget it....terrible. I have been put on steroids to help with the inflammation and I use ibuprofen regularly for this type of pain. What does she do for relief? I also stand in a hot shower with the stream directed to the areas of my lungs that are giving me the most problem.

I to am very thankful for this site. When I was diagnosed, I was lost.....I didn't know anyone else with CF and was still in shock from my diagnosis as I thought it was just an infant/early childhood disease, not something that was diagnosed so late in life. Because of this site, I have found many others who share similar stories and who have similar struggles that a person without CF could possibly understand. I hope you continue to visit this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn 39 w/CF

JustDucky · Sep 3, 2011

I was actually a late diagnosis....at 33, nearly 7 years ago. To be honest, I feel that my "battle" with this disease is still fairly new to me if that makes any sense. I often reflect about my life "pre-CF" and think how much easier it was without all of these treatments and preventative care, even though I was sick often. I then think about how lucky I was to be finally diagnosed and to be given the proper care that I was lacking for my entire life and have to believe that because of this, I will live longer than I would if CF hadn't been diagnosed. I was actually somewhat relieved to finally have a name put to my symptoms that were puzzling so many, especially me. The shock of it set in later.
 -In the years since my diagnosis, I am still learning something new about CF regularly. Education is key to any illness and I firmly believe that knowledge is power. I find that the more I know walking into my appointments, the better it goes. My doctor and I have a partnership in this, I have never felt like I was ever in the dark about my treatment, prognosis, etc. I guess what I am saying, is never stop learning even when you think you know enough, there is always something new in the works.
 -CF is life changing but it doesn't mean that you should crawl in a corner and stay there. Live, live as much as you can. I won't lie, it was really hard for me to accept CF, I was already dealing with terrible issues on the respiratory front, my diaphragm was not functioning well (docs had no explanation as far as cause) and I needed BiPAP, O2 and finally a vent to save my life. The addition of a CF diagnosis sent my mind and soul reeling, I wondered how I would cope with all of the added treatments to my already complicated day. Eventually, things just fell into a routine.My message: with time, acceptance gets better with many twists and turns in between. It's okay to be upset and even depressed at times, but don't get too comfortable in that dark place. Find the fire in your life and keep it going.
 
 As far as your questions regarding supplements etc, I take them. I take vit A, D and E (not K because I have had blood clots in my lungs and am on Coumadin which would be rendered useless if I took vit K) as well as iron (severe anemia), folate and thiamin. Lactobacillus is a really good idea, I take that every time I am on IV antibiotics as I get yeast infections often and that seems to help. I don't use cool vaporizers of any kind so I can't help you as far as advice there goes.
 You listed that your GF gets pleurisy...unfortunately, I also get that often and it hurts. As if simply coughing were bad enough, pleurisy makes you see stars, the whole galaxy with just breathing....coughing, forget it....terrible. I have been put on steroids to help with the inflammation and I use ibuprofen regularly for this type of pain. What does she do for relief? I also stand in a hot shower with the stream directed to the areas of my lungs that are giving me the most problem.
 
 I to am very thankful for this site. When I was diagnosed, I was lost.....I didn't know anyone else with CF and was still in shock from my diagnosis as I thought it was just an infant/early childhood disease, not something that was diagnosed so late in life. Because of this site, I have found many others who share similar stories and who have similar struggles that a person without CF could possibly understand. I hope you continue to visit this forum <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Jenn 39 w/CF

00transam · Sep 9, 2011

I was diagnosed at 12, I would tel myself everything I now know about how important exercise and regular meds is.

00transam · Sep 9, 2011

I was diagnosed at 12, I would tel myself everything I now know about how important exercise and regular meds is.

00transam · Sep 9, 2011

I was diagnosed at 12, I would tel myself everything I now know about how important exercise and regular meds is.

StillFighting · Sep 9, 2011

To JustDucky,

Reading your post made me realize how similar our experiences have been. I too was diagnosed late (at 35). 7 years post-diagnosis, I am still having difficulties in accepting the diagnosis. So, even though it has been 7 years, I understand how you feel.

To David,

If I could go back in time, I would say to myself to never waste a second of your life. Achieve your objectives and goals. Live your life and pursue your dreams. When I was first diagnosed, my life stopped. I was afraid. I now regret what I consider wasting 7 years of my life. I am now back on track and living life to its fullest.

Ana

StillFighting · Sep 9, 2011

To JustDucky,

Reading your post made me realize how similar our experiences have been. I too was diagnosed late (at 35). 7 years post-diagnosis, I am still having difficulties in accepting the diagnosis. So, even though it has been 7 years, I understand how you feel.

To David,

If I could go back in time, I would say to myself to never waste a second of your life. Achieve your objectives and goals. Live your life and pursue your dreams. When I was first diagnosed, my life stopped. I was afraid. I now regret what I consider wasting 7 years of my life. I am now back on track and living life to its fullest.

Ana

StillFighting · Sep 9, 2011

To JustDucky,
 
 Reading your post made me realize how similar our experiences have been. I too was diagnosed late (at 35). 7 years post-diagnosis, I am still having difficulties in accepting the diagnosis. So, even though it has been 7 years, I understand how you feel.
 
 To David,
 
 If I could go back in time, I would say to myself to never waste a second of your life. Achieve your objectives and goals. Live your life and pursue your dreams. When I was first diagnosed, my life stopped. I was afraid. I now regret what I consider wasting 7 years of my life. I am now back on track and living life to its fullest.
 
 Ana

Jet · Sep 13, 2011

I was diagnosed at age 2 in 1964. I'd tell myself that 2011 is going to happen. A wonderful spouse and 2 great kids are going to happen too. College and a whole bunch of normal stuff too.

Jet · Sep 13, 2011

I was diagnosed at age 2 in 1964. I'd tell myself that 2011 is going to happen. A wonderful spouse and 2 great kids are going to happen too. College and a whole bunch of normal stuff too.

If you could go back in time to the day you were diagnosed...

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