Here is the thing, and people have pretty much answered and clarified my feelings for me, but here goes:
I am 36 years of age. I have two CF mutations, one the typical delta, and the other some weird uncommon one. None of us are the same, if not in mutation, then in progression. I grew up in a very supportive family, with a caregiver/mom who quite literally would walk through hell (and often had) to keep me alive and healthy and with her. Aside from some drinking in my late teens and 20's (and I mean party level of drinking) like most people who are outgoing, and some occasional second hand smoke, I never did anything harmful to myself that would accelerate my disease. I had a nurse come to my house 3 times a day to give me CPT up untill either my very late teens, or very early 20's (can't recall). I had always been very compliant, with only a couple "oopsies" along the way. For some reason, I was fairly sickly at times in my early teens, with a few times they thought I wouldn't make it (double pneumonia, etc etc). I was in the hospital quite a bit.
I hit my later teens/early 20's and filled out more like a man, and my health in turn evened out, with only occasional exacerbations. I didn't start to have bleeds till my mid to late 20's. Last time at checkup (as i said, im 36 now) my PFT's were high 90's or slightly over 100, with a good showing for my small airways as well. The PFT tech actually told me "If I didn't know you had CF, these numbers would show a healthy person...Not even a smoker".
Did I "BEAT" CF? No. I just either via luck, care, compliance, mutation, or whatever, bought myself more time. Growing up I was surrounded with other CF patients, all of varying progression/mutations, etc. Out of the original "crew" of around 45 or so, there are maybe 3 or 4 left. Me being one of them. Of those 4, I am by far the healthiest (I have been out of contact with them for a few years now, so for all I know I could be the last left, I don't know). Some of these people mirrored me in my complacence, care, etc. They are dead. I am not.
All growing up, around these people, no one sugar coated anything for me. When I was around 11 years old I was in the same room with a close friend of mine named Kim (male), who was end stage, and literally dying before my very eyes. Every year basically it was another "Did you hear about so and so? Yeah he died". Why am I still here? Who knows, but the 100% truth is, I am not as healthy now CF wise as I was when I was younger. Our disease *DOES* progress. You will never "beat" CF unless we receive something that fixes our defective DNA. The 100% truth is, with this disease, and no correction, we will continue to degrade and then die.
Of course if I had a child I would not word it that way, or if I were speaking to any youngster with CF. I would use myself and some others as an example of what "could be". I would stress strong compliance with care, not 100% buying into everything the docs want to give/do to you, exercise, diet, and lifestyle. And if you do all those things properly, you have a much better chance of living a decently long quality life than if you did not do those things. But I would not lie to the kid. Sure if a kid is born today or not too long ago, they stand a much better chance of receiving some form of "cure" than I or others do, but that is no guarantee either.
Live your life strong and smart, and hope for the best, but don't feel delusional that you are superman and "beat" your disease. I have had some surprising results with supplements, but I still have CF.
I am 36 years of age. I have two CF mutations, one the typical delta, and the other some weird uncommon one. None of us are the same, if not in mutation, then in progression. I grew up in a very supportive family, with a caregiver/mom who quite literally would walk through hell (and often had) to keep me alive and healthy and with her. Aside from some drinking in my late teens and 20's (and I mean party level of drinking) like most people who are outgoing, and some occasional second hand smoke, I never did anything harmful to myself that would accelerate my disease. I had a nurse come to my house 3 times a day to give me CPT up untill either my very late teens, or very early 20's (can't recall). I had always been very compliant, with only a couple "oopsies" along the way. For some reason, I was fairly sickly at times in my early teens, with a few times they thought I wouldn't make it (double pneumonia, etc etc). I was in the hospital quite a bit.
I hit my later teens/early 20's and filled out more like a man, and my health in turn evened out, with only occasional exacerbations. I didn't start to have bleeds till my mid to late 20's. Last time at checkup (as i said, im 36 now) my PFT's were high 90's or slightly over 100, with a good showing for my small airways as well. The PFT tech actually told me "If I didn't know you had CF, these numbers would show a healthy person...Not even a smoker".
Did I "BEAT" CF? No. I just either via luck, care, compliance, mutation, or whatever, bought myself more time. Growing up I was surrounded with other CF patients, all of varying progression/mutations, etc. Out of the original "crew" of around 45 or so, there are maybe 3 or 4 left. Me being one of them. Of those 4, I am by far the healthiest (I have been out of contact with them for a few years now, so for all I know I could be the last left, I don't know). Some of these people mirrored me in my complacence, care, etc. They are dead. I am not.
All growing up, around these people, no one sugar coated anything for me. When I was around 11 years old I was in the same room with a close friend of mine named Kim (male), who was end stage, and literally dying before my very eyes. Every year basically it was another "Did you hear about so and so? Yeah he died". Why am I still here? Who knows, but the 100% truth is, I am not as healthy now CF wise as I was when I was younger. Our disease *DOES* progress. You will never "beat" CF unless we receive something that fixes our defective DNA. The 100% truth is, with this disease, and no correction, we will continue to degrade and then die.
Of course if I had a child I would not word it that way, or if I were speaking to any youngster with CF. I would use myself and some others as an example of what "could be". I would stress strong compliance with care, not 100% buying into everything the docs want to give/do to you, exercise, diet, and lifestyle. And if you do all those things properly, you have a much better chance of living a decently long quality life than if you did not do those things. But I would not lie to the kid. Sure if a kid is born today or not too long ago, they stand a much better chance of receiving some form of "cure" than I or others do, but that is no guarantee either.
Live your life strong and smart, and hope for the best, but don't feel delusional that you are superman and "beat" your disease. I have had some surprising results with supplements, but I still have CF.