Wednesday, January 30, 2013

30 Days of Truth: Day 6


Something you hope you never have to do

I sit on the edge of the bed with my head in my hands, struggling to catch my breath. I'm glad the "puke bucket" was within reach because I wouldn't have made it to the bathroom this time. Always keep a bucket near the bed - a lesson I learned the hard way. This type of thing isn't unusual when I'm not feeling well. Sitting up for the first time in the morning is all it takes to stir things up in my lungs and trigger a vomit-inducing cough attack. 

I make my way to the bathroom, coughing the whole time. I pause to look at myself in the mirror and see that the circles under my eyes seem a little bit darker this morning. The imprint of my oxygen tubing is very visible across my cheeks and will be for at least the next half hour or so. The outline of my collarbone becomes more prominent with each labored breath that I take. These little things that go unnoticed by most are sometimes the only visual evidence of the fight going on inside my body.  

It's not always like this. I don't always need to use use supplemental oxygen, and it's not often that I struggle to breathe this way. I take comfort in the knowledge that once I get over this cold, once this infection is gone, I'll go back to feeling like myself again. But as the violent coughing continues and I decide to crawl back into bed with my oxygen for a while longer, I can't help but wonder how long it will be until all of my days are this much of a fight. 

Mornings like this make me wonder how long these lungs of mine are going to hold up... 

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When a disease has taken nearly everything from a person, transplant can be a second chance at life. People with cystic fibrosis in need of a transplant usually require new lungs but may also need liver, kidney, or heart transplants. Personally, I'm a huge supporter of organ donation and transplantation. I'm so happy for those who have received their new lungs, I hope and pray with those who are waiting, and I'm completely humbled and blown away by what a miracle the whole process is.

But when it comes to thinking of myself getting a transplant? Well, I prefer not to go there. Just the thought of someday needing a lung transplant is absolutely terrifying to me.

Over the past few years I've followed the stories of several people along their transplant journey. Some of these people I know personally; most of them just through the internet. Each story is different, with varying degrees of success. Some of these strong individuals are living the lives (post-transplant) that they could only dream of living before. Some received a transplant but passed away shortly after, or have found themselves in a day-to-day, epic battle for their life. Others never got the call...

Although transplantation offers new hope, it also presents new challenges and responsibilities. From what I understand, the evaluation process can be long and very trying. The surgery itself is, well, huge! Then a life of immunosuppressive drugs (that forever reduce a person's ability to fight infection) and risk of rejection certainly doesn't sound fun. Transplant is not a cure for CF. It's like trading one set of problems for another, really. And it all sounds like something I never want to go through.

Then again, I know me. If I reach that point in my life, if given the option, I know I'll choose to fight. I've got too much to live for! If I get sick enough that a lung transplant is my only hope, you better believe I'm going to do it! And maybe that's what scares me the most - knowing that facing this fear of mine is a very real possibility at some point in my life.

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I don't like to think about and dwell on my fears too much. But on mornings like this, I allow myself to think about the future and admit that I'm afraid. And on mornings like this, I feel that much more motivated to do everything within my power to keep these breathers inside me for a very, very long time! 

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This post is part of the 30 Days of Truth challenge. 
For a list of all the prompts and corresponding postsclick here.
If you decide to participate, please link to your blog in the comments.

4 comments:

  1. Jenny--I've heard of people having lung transplants , but never really understood what that would entail, it sounds insanely daunting, not the fix I'd initially thought. I admire you for listing all these truths. And I'm constantly in awe of both you and Teresa and all the things you have to overcome in the normal swing of things... and you do it with a smile on your faces. You are an inspiration :)

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  2. I used to be really conflicted about transplant, but then I got to know several CFers who went on to have transplants and was totally converted. It's a grueling, difficult process with lots of its own challenges... but when you reach that point, it is an AMAZING second change. That said, I would NEVER ever have a transplant done here in Utah. If we were still living here if/when I got to that point, we'd move for the transplant.

    And I have to say, this is one of those cases in which I'm really glad that I don't physically vomit! I have those horrible oh-my-gosh-I-might-black-out coughing fits where I FEEL like I might vomit but I never actually do. It's kind of a relief! (esp during my first trimester of pregnancy....) sorry you've been feeling so crummy. :(

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  3. SORRY to hear you are still feeling yucky! That is no fun :( I hope soon that your body will fight this off.

    I think in this community like you said we all fear that possibility of needing a transplant and its really a reality. I hope we will see a cure to this before that happens.

    Get better soon cyster!

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  4. Sorry you haven't recovered from that terrible cold and infection and wishing you sunny days just ahead.

    I hope and pray each day that the miracle drug will be found for all who suffer from this awful disease and you can live life free from your many struggles.

    Warmest regards.

    Larry (GA)

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