Reading some of these posts reminds me of a discussion in May between my Doctor & husband. Basically what it came down to was my husband was excited because the doctor told him if I take care of myself the way I should that I have at least 20 years to look forward to. I looked at him & told him that besides seeing our daughter grow up, I dont see that news quite as exciting. Why? Because to me that is 20 years more of aerosols, meds, O2, the vest, manual clapping, weight issues, hospitilizations, pain, hemoptysis, constant planning to avoid over doing it etc. Am I glad that I have beaten the odds? Yes. Do I want to continue for that long? I dont know. No I am not suicidal, but I am realistic & that is a hell of a long time. Granted that I dont know what the future holds, but I know what the past holds. I really busted my husbands bubble, but I couldnt hold those feelings in. Was I wrong in telling him my true feelings?
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My future with CF
- Thread starter JazzysMom
- Start date
I'm sure you've had some days where you've wondered if it's all been worth it, and were just short of saying "Hell no, it wasn't." Well, in 20 years, barring some improbable treatment surfacing that will make all your concerns obsolete, it'll only get worse. Potentially <i>far</i> worse. So it won't be just the same; if you're <i>lucky</i>, it'll involve only one or a couple of CF's nasty peripheral side effects (osteoporosis, diabetes, ulcers, liver failure), showing up by then, instead of, say, five or more. And maybe, again if you're lucky, you won't get the degree of lung damage that makes walking to the bathroom as difficult as climbing Mt. Everest for a healthy person. But I wouldn't count on it.
Realistically, those who've had CF for any length of time have very little to hope for in the future. Almost every new treatment out there is focused on improving the situation <i>before</i> extensive lung scarring and the like occurs. Even the much-touted gene therapy wouldn't do much for us old-timers, as it would only prevent <i>new</i> damage, not correct our existing ruined lungs. The only real hope I see is cloning new organs, wholesale, eliminating concerns with rejection and removing the need for toxic and dangerous immune-suppressing drugs, but that seems like sci-fi technology, so I wouldn't bet on it.
Where am I going with this? Well, you're perfectly right to be wary of the future. By and large it's gonna suck, horrendously, any way you look at it. The only reason we shouldn't all commit suicide right now, saving us the trouble, is because there's the <i>potential</i> that it might have enough good parts to outweigh the horrendously crappy ones. I sincerely hope that's the case with you, but sadly, we all know there's no guarantees.
Realistically, those who've had CF for any length of time have very little to hope for in the future. Almost every new treatment out there is focused on improving the situation <i>before</i> extensive lung scarring and the like occurs. Even the much-touted gene therapy wouldn't do much for us old-timers, as it would only prevent <i>new</i> damage, not correct our existing ruined lungs. The only real hope I see is cloning new organs, wholesale, eliminating concerns with rejection and removing the need for toxic and dangerous immune-suppressing drugs, but that seems like sci-fi technology, so I wouldn't bet on it.
Where am I going with this? Well, you're perfectly right to be wary of the future. By and large it's gonna suck, horrendously, any way you look at it. The only reason we shouldn't all commit suicide right now, saving us the trouble, is because there's the <i>potential</i> that it might have enough good parts to outweigh the horrendously crappy ones. I sincerely hope that's the case with you, but sadly, we all know there's no guarantees.
Mockingbird
New member
Ha ha, I always joke, that CF tends to shorten the life span, but with my luck I'll live to be over eighty. =-) I think this is one of those serious subject that it's better not to be so serious about. =-) People get upset sometimes, when I joke like that, but when I talk about it seriously, they just get more upset and it turns into an arguement that never ends.
JazzysMom,
You are totally justified to say what you feel. If we really think about it - truthfully - it is a long time.
But when you really think about it, isn't it worth the effort to see life unfold - good and bad?
Life for everysingle person on this planet, is different and has many challenges. We just have different
ones to face. But I can tell you, some of your words/writtings/musings here on this forum have helped me out.
I think you are rather mature to be able to admit that to your husband.
I look forward to 20+ more years hearing from you.
-steve
You are totally justified to say what you feel. If we really think about it - truthfully - it is a long time.
But when you really think about it, isn't it worth the effort to see life unfold - good and bad?
Life for everysingle person on this planet, is different and has many challenges. We just have different
ones to face. But I can tell you, some of your words/writtings/musings here on this forum have helped me out.
I think you are rather mature to be able to admit that to your husband.
I look forward to 20+ more years hearing from you.
-steve