Sunday, May 2, 2010

When you loose someone with CF, its like a rock hitting the water

Yesterday we lost 2 CFers.  Both young.  I knew one of the women, but had only heard of the other.  Either way, when a CFer dies, it hurts.  And when you think how healthy they were and how they declined so rapidly, it scares you.

Right now, I am healthy.  I may have days that I feel like utter shit and want to crawl into a hole and die, but for the most part I feel fairly good.  I can function fairly well, I can do house work, I can socialize.  These are all good indicators, to me, that I am well.  But I worry about THAT infection that could knock me on my ass and leave me helpless, or even worse, dead.

This has happens with quite a few CFers.  Fairly healthy, chugging along and then WHAM! That infection hits and they are super ill, hospitalized, vented and sedated.  And then the worst happens, they pass.  These people that were up and "running" around just 6 weeks prior are now laid to rest.

Its truly scary.  When that happens you see yourself, you see you in their place.  Healthy and then sick.  Happy and then dead.  That is the uncertainty with CF.  You just never know when you will get the infection that could kill you.  It still hasn't sunk in with me and I try not to think about it at all.  But it is hard when you watch someone go through with it.  When you watch someone with the same disease as you decline and pass.  You can not help but think about your own mortality.  It's inevitable.

And in a way it makes you treasure and value everything you have even more.  I stood on my back porch today and looked around at the blue sky, the bright sun, the green grass and my amazing boyfriend and felt so happy that I was there, where I should be.  We spent the day out and about enjoying the 85 degree weather, with the top down on the jeep, driving to the beach and enjoying pizza and ice cream with his daughter.  I treasure these days because one day, I will be like the above mentioned and not be able to talk, walk or function.

Don't forget to treasure your loved ones too, and appreciate just what it is that you have in life!


  1. My perspective is a bit different since I'm a CF parent but I would guess we share some of the same fears. My son is doing very well but there is that lingering fear in the back of my mind. The what if's... I do my best to not let it take over but when you hear these stories it creeps in. Thank you for your thoughts. I always enjoy your blog.

  2. Well put, as always. I have had so many CF friends lately pass "without warning" -- some from the forums and some from other parts of my life -- and every time it is so, so scary. I keep thinking that these women (my IRL friend Lauren, Ginger, Sonia, Emily) were all HEALTHIER than me. They were worried about ME. I was the one talking about and facing transplant, not them. Each and every one of them checked into the hospital thinking they would check out, and the scariest part is I don't know that any of them really got to say goodbye b/c they were so suddenly vented and sedated -- their lives in some ways out of their control.

    It makes me mad. Makes me want to cry, scream, write, punch something, hug my dog, listen to melancholy music...whatever. It scares me and, like you said, it reminds me that life is precious. But I don't want that lesson at the cost of another life! And the worst part is that it makes me want to round up all my CF friends, regardless of health, and force them all into transplant evals. Because I just can't stand the thought of more lives lost unexpectedly. But then I remember that transplant is unpredictable too, and then I just feel all the more scared.

    Anyway, thanks for the perfect words. So much love and light to you up there, honey. I cannot wait until after this transplant when I am going to come up to Boston and you, Beth, and I aree going to spend the day exploring and having a GREAT time.

  3. But you also see people fight. You see people hang on and celebrate what they can. You see people like Eva who dis her damn best to have the world learn something from her, something not specific to cystics.

    My point is: try to project yourself into all aspects of what you see in others, not just the scary ones.

  4. Exactly Piper!!!! It's the people that are healthier than you that are the scariest :)

    I can't wait either!!!!

    I know Bo, but when someone dies THAT is when you think about it. The rest of the time I can say I rarely think about it.

  5. I worry about that too sometimes. It's scary how fast things can go from great to death. With having the transplant I still worry about infections, but now I also worry about rejection too. Just one more thing to worry about I guess.

  6. Your post hits so hard with any of us 'older' cfers who have lived long enough to watch CF take our friends. . .and even tried to take us. I still remember how terrible I felt inside when I attended my first CF funeral. I felt horrible that my young friend was gone, but also horrible inside for myself. I knew I had the same fate. You're right about appreciating what we have in life. . .it can all change tomorrow!

    I agree with Piper. When I hear of CF killing a young life, my mind screams out and I ask why were they not transplanted and given more life, higher quality of life! In reality life with CF, Transplanted Organs, or life 'ordinary' is all unpredictable. So no matter if we are sick, or healthy appreciating what we have is important.

  7. Well put Amy, I have seen so many that have had either the same lung function, or considering I low lung function even others that have had higher than me get sick and pass within months even weeks.
    You blog made me cry a little today, not just for the friends we lost but the lack of understanding from many non CFers that we are constantly on the edge, the slightest infection, or other problem can change everything...forever.
    Hug to you Amy, I'm so glad I met you <3

  8. Can anyone give me some advice or support my mom died of an infection after giving birth to me she was 29 and had cf I'm 20 and just found out I have cf I only found out b/c I'm three months pregnant. If u want to give me any advice plz text me @ 270-874-0869 thank u so much in advance.

  9. I posted a comment earlier my names amiracle swiney and I need someone to give me hope I have a lung infection I'm pregnant and scared I don't want to die like my mom plz somebody tell me wut to do?

  10. Anon I don't text complete strangers, sorry. Nothing personal but I am not about to give out my number to someone who didn't even tell me their real name. If you want to talk you can message me on facebook. If you don't have facebook feel free to sign up on CF2Chat which is linked at the top of my blog.

  11. "When that happens you see yourself, you see you in their place. Healthy and then sick. Happy and then dead"

    so true. and scary to admit to others - thanks for sharing!