NYCLawGirl
New member
Hi Jerry,
I have been fortunate in that fundraising hasn't been a huge consideration for me in starting the tx process, but as someone close to many CFers who I have watched struggle with the fundraising issue, I agree 100% with your "earlier is better" approach. I think many CFers are hesitant to start fundraising for a tx early b/c they feel it is "too soon" or they just don't want to think about the fact that their disease might be progressing. That said, tx is certainly stressful enough without having to last-minute fundraise, and I think encouraging people to plan early would really help reduce the anxiety so many CFers feel when starting this process.
I don't know if this is necessarily true anymore or not, but I distinctly recall my CF doctor when I was growing up (one of the recognized top docs in the nation) telling me that "all people with CF should eventually prepare for a lung transplant. Maybe in 10 years, maybe in 50, but eventually it will be a decision you'll need to face." He said that to my mother and I when I was probably about 15 years old and still had very high lung function. Though at the time I thought it was alarmist and rather pesimistic, I have since replayed those words in my head with gratitude. When my adult doc told me I should consider a transplant evaluation at 26, I felt so much more prepared just b/c my old doctor had the foresight to at least mention it to me early. And it wasn't like he told me or my mother to dwell on it, it wasn't as though he mentioned the evaluation or scared me by implying it was around the corner, but he put it on my horizon at a time when to be honest my lungs were the last thing on my mind, and it probably was a good idea. At least for me.
Anyway, sorry for the novel, but I think my point is that I think transplant should be more generally visible to everyone with CF, regardless of age or CF progression. Not as something scary, but as a hopeful treatment that may or may not be something to consider in the future. Kind of like even CFers who don't use pulmozyne or need IVs are aware that those are tools that may later come into play.
I have been fortunate in that fundraising hasn't been a huge consideration for me in starting the tx process, but as someone close to many CFers who I have watched struggle with the fundraising issue, I agree 100% with your "earlier is better" approach. I think many CFers are hesitant to start fundraising for a tx early b/c they feel it is "too soon" or they just don't want to think about the fact that their disease might be progressing. That said, tx is certainly stressful enough without having to last-minute fundraise, and I think encouraging people to plan early would really help reduce the anxiety so many CFers feel when starting this process.
I don't know if this is necessarily true anymore or not, but I distinctly recall my CF doctor when I was growing up (one of the recognized top docs in the nation) telling me that "all people with CF should eventually prepare for a lung transplant. Maybe in 10 years, maybe in 50, but eventually it will be a decision you'll need to face." He said that to my mother and I when I was probably about 15 years old and still had very high lung function. Though at the time I thought it was alarmist and rather pesimistic, I have since replayed those words in my head with gratitude. When my adult doc told me I should consider a transplant evaluation at 26, I felt so much more prepared just b/c my old doctor had the foresight to at least mention it to me early. And it wasn't like he told me or my mother to dwell on it, it wasn't as though he mentioned the evaluation or scared me by implying it was around the corner, but he put it on my horizon at a time when to be honest my lungs were the last thing on my mind, and it probably was a good idea. At least for me.
Anyway, sorry for the novel, but I think my point is that I think transplant should be more generally visible to everyone with CF, regardless of age or CF progression. Not as something scary, but as a hopeful treatment that may or may not be something to consider in the future. Kind of like even CFers who don't use pulmozyne or need IVs are aware that those are tools that may later come into play.
