Friday, March 21, 2014

I'm only Human...

For those who are friends with me on facebook know I was listed for transplant on January 20th. I had been in the evaluation process since June of last year and with my lung function dropping to an all time low of 22% my doctors thought it was the right time to list me, so I finished up the testing while I was in the hospital for 18 days and was listed the day I was discharged. When your listed for transplant your given a allocation score which determines where you are put on the list, the higher the score the more urgency for transplant. Currently my score is 33 putting me lower on the list. As my health changes that score can be changed to fit the status of my health whether it gets better or worse. The doctors felt it was time to list me because over the past year with every hospitalization I have not been able to bounce back so to speak, and my lung function hasn't been going back up like it use to. Also because I am still semi healthy which makes me a good candidate. I passed every test on every other part of my body that they run! Being listed for transplant doesn't change my day to day life with CF at all, I still have to do everything to stay as healthy as possible as I always have.

So many don't know how to take this news of being listed for transplant. Is it good or bad? There is really only one answer that I feel fits. It's bad that my health is at the point that I need to be listed, but it's good that I have that option available to me. It's not where I wish I was in my journey with CF, I don't think anyone ever wishes to be here. But non the less this is where I am at in my journey now.

My journey with CF has never been easy so to speak, but it has never been harder than the last few months. I  mean that's pretty normal considering it's a progressive disease, but that doesn't make it easier. You can only prevent and prepare so much for the hell that comes with lung failure. In the past it has been fairly easy for me to adjust to me new levels of function as they dropped, because it was usually a slower process and my body acclimated to it far before I even realized it had happened. That is not the case in my most recent decrease in function and new normal for me. To be completely honest I'm not adjusting well at all. The truth is I will most likely get much worse and suffer much more before being transplanted, if I am lucky enough to get that call. The truth is I could die waiting as so many do. That's not a new revelation in my story, because in fact without the opportunity to be listed and given a chance, my life would likely be taken because of CF, I've always known that. And to all those who say you never know when your going to die or why, yes that's true, but I have always been more likely to die from CF than anything else. Anyways death is another story. What I'm not dealing well with is the worsening in my days, my struggle to eat, and on days when I'm really bad the liberty of being able to bathe myself being striped. When getting dressed to go out is more of a chore than it's worth to go out, when I can't stand to wear a bra because it constricts my chest to much and makes it hard to breathe. There's not one thing to pin point that makes it harder, its a bunch of little things that add up. These are the things you take for granted the ability to do on your own until that ability is gone. It's a hard pill to swallow. It seems I have more bad days than good more recently which is hard and wearing on my usual positive attitude. I think the hardest part is having a great day and then feeling like death the next day. Also not being able to rely on my body when I need to make plans for future events, always being afraid I'm going to have to cancel because I just can't muster up the energy or feel like I'm drowning in my own lungs. Plus this winter has sucked the life out of me! (yes I'm going to blame my problems on the worst winter in Michigan history, sue me!) I can't do nothing because it's been so fricken cold, I can't even breath when I go outside, let alone stay warm, or do anything! So I'm hopeful for a better spring and summer.

As hard it is, it's okay. I've always been the type who needs to feel my emotions and work through them on my own, I don't want medication to deal, I have been given that option, and some need that I totally understand that, but not me. I need to feel the lows to truly appreciate the highs! I need to break down once in a while, or a lot for a while, and I need that to be okay. After all I'm only Human.

1 comment:

  1. I'm praying that you will get new lungs soon, Jamie! And that you will be much better when you get home from the hospital this time! I love you! Candy