The test today, which I couldn't do, just really got me thinking. If I can't handle that, will I be able to handle a cracked open chest and new lungs?
I just look at everything that needs to be done, all the recoup time, all the tests, medications, appointments and I wonder "is it REALLY worth it?" What if I end up with shitty lungs again? What if I reject fast? What if I die in surgery? What if...what if...what if?
The choice is mine right? I know I have a family now, but I can say no right?
Maybe I need to step up my health game. Maybe I need to kick it into high gear and work on staying healthy so I don't NEED a double lung transplant.
Life was a lot easier when I was against getting a transplant. Then again, I could actually breathe back then....
I'm the same way, I go back and forth on whether or not I want to go through with it. It is your choice and as much as people who know may not like it, they still need to respect it.... whichever you decide <3
ReplyDeleteHi there, I am usually a silent reader. For this post, I'd thought I'd pop in and share this story: My sister and her best friend both have CF.(as well as myself) They are also the same age. They also were both doing so poorly. My sister at 19 decided to go ahead and list. She was on the list by 20. Her friend (who was doing just as poorly) decided not to list. Again, very personal decision and we supported both of their unique decisions. After two years my sister never got a call, her friend still hadn't listed. After a few heart to hearts my sisters best friend decided she could fight too and listed. They both ended up getting lungs 3 weeks apart from each other. It was amazing to say the least.
ReplyDeleteMy sister did awesome. She was off the vent within 24 hours (doctors would pop in because they couldn't believe she was already off! ) and by week 3 she was up and going and continually improved. Almost 3 years later she has a lung function of 90% and is finally living life again.
Her best friend did great at first too! Really started to bounce up. However, she had some complications - kidney failure, high liver levels, some mild rejection, and her path greatly differed from my sisters. Her lung function sits around 40% now (she had reached a peak of about 73%) and she's still going through tests now and again to figure out what is reeking havoc on her body.
Although her transplant wasn't as successful as my sisters if you ask her if she regrets her last minute decision, she doesn't. She said she would do it again in a heartbeat (and is possibly thinking about re-listing a second time).
It is your decision, and truly your decision alone. Everyone will support you no matter what you decide.
I know the what-if's seem so overwhelming but my sister used to go with "when"s ; "When I get new lungs, I'm going back to school" "When I get new lungs I'm going to laugh until I cry, and not even need my inhaler" "When I get new lungs I'm going to walk the dog, and bring in my own groceries." -- I think a lot of the time, the when's kept my sister fighting.
xox
Hi Amy - perhaps it's seeming so overwhelming because you have decided to try to get the testing done and inactively listed all within an imposed time limit. It is definitely your choice and you should not feel pressured - meaning if you want to wait and know you'll have to repeat some of the tests at a later date, then that's a choice too. I believe the transplant team will respect your choices. - Catchastar
ReplyDeleteI had a friend that was going in for her second double lung transplant and didn't make it due to size complications. She always told me that she thought it was the greatest decision she's ever made. I'm hesitant about transplant for sure, but she said when the time comes she thinks I'll choose to have one.
ReplyDeleteShe loved it..
Whatever you do, I hope people respect your decision! :)
I'm doing this old school "smart vest" right now and trying not to freak out about my tests in 35 mins. I hope I don't injure someone on accident. I get really strong when I'm afraid. lol.
You will KNOW when it is time, Amy. You don't have to decide until the last minute. Just do all your testing and get listed. Do everything you can to stay in the best health you can. I was listed in 2000 for the first time. In 2002 I was at the top of the list ( it was based on time back then), I stopped working and amazingly I got better. I took myself off of the active list until 2010 - eight extra years. I was transplanted in May 2011 and have had a difficult time so far, but I am alive which is much better than the alternative. Don't worry about it and trust what your body tells you.
ReplyDeleteP.s. I am the one you met in transplant clinic a few months ago =) if you want to chat, drop me an email knolankn@yahoo.com