NYCLawGirl
New member
Deanna, I just wanted to say that that was a beautiful post. I feel the exact same way -- there are lungs for me out there, and they will come on the perfect day at the right time. It's how I got through 2 dry runs as well, just thinking that those must not have been "my" lungs.
Busbie, you're totally not alone in feeling discouraged. The waiting is hard -- most people say that waiting for transplant is the hardest part of the whole process (cue Tom Petty song <img src="i/expressions/face-icon-small-wink.gif" border="0">). Honestly, there are days when I wonder if lungs are coming at all, ever. And then there are days when I'm happy I've made it this far on my own. But I want lungs to come while I'm healthy enough to receive them, of course, and it can be SO frustrating. So I definitely feel you on this one.
If you live in an area where there are multiple centers (not necessarily super close, but within the limit -- normally 4-6 hours away), multiple listing can be a great idea. People who are "average" in terms of blood type and height often wait a while b/c there are a lot of other people to "compete" with on the list (sidenote: I hate thinking of it like that, but you get what I mean). The scoring system is great, but not perfect when it comes to disease like CF b/c it doesn't take into account things like exacerbation frequency or resistant bacteria, which can be major factors in a CFer's health. So sometimes it really helps to play the system a bit in terms of getting on two lists -- preferably in two different states/regions so that you're able to take lungs wherever they become available.
I would also stay in as close of contact with your tx center as possible. I know these things aren't really political and the team doesn't have much (if any) say in who gets organs, but it never hurts to stay on their radar. They can also help suggest ways for you to stay as healthy as possible so that you will be ready for surgery when you get the call. And yes, sometimes they have ideas the CF teams don't really think about -- remember it's THEIR JOB to get as many people through this surgery HEALTHY as possible. CF teams are more entrenched in CF protocol. I love that my tx team and CF teams work together and that I can discuss my appointments with both of my docs to bounce ideas around. I also like knowing that my tx center has me in mind and knows how I'm doing at any given time. It helps them make educated decisions and will also help them take care of my health post-surgery, since they already know some of my patterns.
Good luck -- definitely thinking of you! Where are you listed, by the way?
Busbie, you're totally not alone in feeling discouraged. The waiting is hard -- most people say that waiting for transplant is the hardest part of the whole process (cue Tom Petty song <img src="i/expressions/face-icon-small-wink.gif" border="0">). Honestly, there are days when I wonder if lungs are coming at all, ever. And then there are days when I'm happy I've made it this far on my own. But I want lungs to come while I'm healthy enough to receive them, of course, and it can be SO frustrating. So I definitely feel you on this one.
If you live in an area where there are multiple centers (not necessarily super close, but within the limit -- normally 4-6 hours away), multiple listing can be a great idea. People who are "average" in terms of blood type and height often wait a while b/c there are a lot of other people to "compete" with on the list (sidenote: I hate thinking of it like that, but you get what I mean). The scoring system is great, but not perfect when it comes to disease like CF b/c it doesn't take into account things like exacerbation frequency or resistant bacteria, which can be major factors in a CFer's health. So sometimes it really helps to play the system a bit in terms of getting on two lists -- preferably in two different states/regions so that you're able to take lungs wherever they become available.
I would also stay in as close of contact with your tx center as possible. I know these things aren't really political and the team doesn't have much (if any) say in who gets organs, but it never hurts to stay on their radar. They can also help suggest ways for you to stay as healthy as possible so that you will be ready for surgery when you get the call. And yes, sometimes they have ideas the CF teams don't really think about -- remember it's THEIR JOB to get as many people through this surgery HEALTHY as possible. CF teams are more entrenched in CF protocol. I love that my tx team and CF teams work together and that I can discuss my appointments with both of my docs to bounce ideas around. I also like knowing that my tx center has me in mind and knows how I'm doing at any given time. It helps them make educated decisions and will also help them take care of my health post-surgery, since they already know some of my patterns.
Good luck -- definitely thinking of you! Where are you listed, by the way?