Tuesday, January 24, 2012

Liver Appointment Tomorrow

It seems like time has flown by since I found out that I wouldn't be approved for IVF without prior approval from a liver specialist as my liver enzymes have elevated.  My appointment is finally tomorrow, and if I've learned one thing over the past few months about IVF it's that I refuse to get my hopes up.

I'm going tomorrow with the idea that this is going to be a lot of tests and a good extra month before we get the approval.  I'm also, however, extremely nervous.  CF is the kind of disease that doesn't care what kind of plans we all have, so I'm concerned that maybe CF has decided it's time to start really bothering my liver.  I'm hoping and praying that I'm not headed down the path toward a liver transplant.  If that's the case then it's a definite "no" for the IVF process.

I will post tomorrow to let you guys know how it went and what the current verdict is.  I've been hearing and reading about a few people at the end-stages of CF and it's been quite depressing and scary.  I know that lung transplant is ultimately in my future, but I refuse to accept that it's ANYWHERE near that time yet.  I am terrified of what happens when I get to that point.

So, that's where I am right now...just thinking about things and a little concerned for the news tomorrow.  I'm taking my mom with me so that no matter what happens, I have someone there with me.  


  1. I used to think that lung transplant was definitely in my future, but now... who knows? With all the new drugs on the horizon, I think it's entirely possible that people like you and me, with relatively high lung function, will be able to dodge that bullet. I guess we will both see! I'm praying for you in your appointment!

  2. Wow, I can't believe it is tomorrow! I am wishing you the very best of luck and hope you can move forward with IVF soon! I understand not wanting to get your hopes up, but I will get my hopes up for you.

    I have read several blogs about people at end stage disease and it is so hard to read and know that we are headed in that direction (even if it is very far off), but I also read several blogs of people post transplant (complications and all)and they are the most inspiring blogs I have ever read and have really calmed my fear of transplant.

    Good luck! I will be thinking of you tomorrow!

  3. Thank you ladies for your support and thoughts. I hope you're right, Cindy. We're going to see the cure in our lifetime, and we won't need transplants! :)

    Inhaling Hope, I should start reading more post-transplant blogs...maybe that will make me feel better!!

  4. I don't know if we will necessarily see "the cure"... I admit, I'm pretty jaded on that count since they have been saying that for SO long and NO progress has been made. But I do think that we have a very good chance of seeing medications that dramatically change our lives. From what I've read and heard, there is nothing in the works as of yet that could fix already damaged lungs, so we will always have SOME level of problems... but the new gene-targeting drugs COULD potentially help dramatically reduce the regular further decline, which could mean no lung transplant in the future (or if there is one, not for a MUCH longer time than it would otherwise be!). So, I'm hopeful.

    That said, if I do need a transplant, I will absolutely and wholeheartedly get one. I have a lot of friends whose lives have been changed in such an amazing way after transplant. I know people who went from being literally at the doors of death, on vents, unable to move/eat/breathe/do anything - and now they are healthier than me!!! I used to have mixed feelings about transplant, but I have seen SO many people who are literally given an amazing second chance at life that I would definitely go for it.


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