Tuesday, May 11, 2010

The beginning of the end?

My husband usually knows his body. When he says that there is something wrong, there usually is something wrong. He can tell when something is different and when he needs to go into the hospital. So, a statement that he made to me a few weeks ago has me very concerned. He told me that he won't make it another year. Wow. That floored me. I asked him about it the next day to see where the statement came from (e.g. if he was just having a really rough day, etc.). He said that he wasn't entirely sure, but it was how he felt. So, I recognize that the statement could have been a measure of how he was feeling that day, but deep down I worry that it is something more. And part of me has that feeling too. It is strange because he still works full-time, has the same lung functions that he has had for years (in the low 40s), doesn't need 02, etc., but he is definitely "sick." I see it and feel it. It is hard to quantify and a bit frustrating because his numbers don't quite correlate to what I am seeing and apparently what he is feeling.
He has mentioned transplant and we are starting the "talking about it" process. We have a clinic appointment in two weeks and that should be the main topic of discussion. That whole prospect scares the crap out of me. I'm scared that I won't be enough through that process. I already feel like I am not enough--and I think that Gess feels that way too--when he is semi-healthy, so how will I possibly be able enough through that process?

And then of course there is the question of whether he will even be a good candidate for transplant. His liver will probably not survive a lung transplant and his lungs would not likely survive a liver transplant...or at the least, the transplant teams would probably not want those odds. So that leaves us with liver AND lungs. There have been 37 in the U.S. according to UNOS. None at the UW. Should we go to another center? Move? Do I need to start studying for some other state's bar exam?

Should I have hope? Hope scares me. Should I stop thinking about it? I wish I could. So, I guess I will just have to try to distract myself until we can talk to the doctors and see how that goes.

6 comments:

Shannon said...

so much to think about. Hard too, having come off a year like the CF commuity has had, not to think about all this stuff. I hope you guys can have some good conversations between yourselves and with your docs and have some choices in place so if and when the time comes where a decision HAS to be made, you'll be ready. (((HUG)))

Sandy said...

Oh sweetie, my heart hurts for you so much right now. "In sickness and Health" takes on a whole different flavor when you have to deal with the decisions that you guys are now having to make. Know that you are both loved so much and I am here if you need anything. Big hugs to you both.

CowTown said...

Yikes Lisa! I think it's a really good thing that Gess is ready to start talking about transplant. I remember he hasn't been, I guess, up until now.

Talking about it, thinking about it and going over the facts with a transplant coordinator will all help in grasping it more.

Everyone can be so different when it comes to their numbers and their presentation of cf progression, that I think you need to focus on your gut feelings and act on those instead of waiting for x, y, z to happen first (ie: getting on o2, etc.) I should talk, b/c I've been kind of waiting to need O2 before taking the next step in my evaluation, but one coordinator told me not to do that. So I agree, there is SO much to contemplate.

I'm going to PM you.

XO to you and Gess!

Amy said...

HUGS Lisa!!!!!!

I hope that you are able to chat with the team and figure this out. Patti will be the first to say Cleavland clinic is great for the liver and lung transplants. Maybe you could see about being listed there. I know Patti still lived in NY and Beth is also listed there and still lives here in Boston. It's worth a shot. :)

NoExcuses said...

Hugs to you Lisa! I know you guys will make the right decision!

Mary ElizaBeth Peters said...

I am just seeing your blog now. I highly highly highly recommend Cleveland Clinic, and I know they seem to pride themselves on taking cases that other centers do not, including multiple organ transplants. For me, and in general, they do not require you to live in Cleveland while on the list, though they do transport you there if you are critically ill. I am not sure if this would be true for Seattle to Cleveland transport, but I know it was said that they "go all over the country,"- please feel free to email me at cysticgal@gmail.com and we can email or talk on the phone.

Do not give up. The beginning of a hard patch always seems like the beginning of the end.

The End has begun so many times for us CFers that The End can suck it! :)

With love, and a dark wit,
Beth