Monday, June 15, 2009

A rough weekend in the world of Lung Disease

This weekend was a rough one in the CF world. We lost 3 people to this disease.

Ava, Neeshy and Mason – Breathe Easy now.

Ava was only 15 years old and had received her double lung transplant last week, only to pass on Sunday morning from complications.

Neeshy was young as well. I was not aware she was sick until she passed…so sad. She had just begun the transplant evaluation process.

Mason I never got to talk to but Q was talking about him Saturday night in chat and then Sunday he passed. If I remember correctly Mason had PH and a lung transplant and was waiting being listed again because of complications. He was in his early 20s.

It saddens me to read about these deaths. It frightens me that I might have to say goodbye to more friends at some point. When Jenn passed it hurt like hell. I was not as close to her as some but she was my first real CF death. I had lost other people I chatted with once or twice but nothing to the extent of talking almost every night in chat and exchanging text messages, like I did with Jenn. I think about her often and find my self always going to click on her name on Facebook for a cause or such to invite her to.

I worry about all my CF friends (and my non-CF bibliophile friend). Those that are post transplant, those that are waiting new lungs, those that are soon to be listed, those getting close to evaluation and those that are “healthy” in the CF world.

I never worried about CF deaths before. I had never known anyone else with it. There was a risk I was taking by joining the forums and befriending so many people, but I did it anyway. I would never trade what I have for anything in this world. The friendships I have made with some of my fellow cystics are remarkable, and I cherish each of them. Some of these people I may never get to meet in person but they have touched my life in ways that some of my RL friends never will.

I love each and every one of you. Losing a cystic sucks but it also reminds us that what we have with each other is so very precious and we should treasure it everyday – CF or not.


  1. So very well put Amy. It's so true, we need to value everyday CF or not. Ava, Neeshy, and Mason have not left my thoughts all day long. My heart breaks :( It just makes me want to kick CF's a$$ even more!!!! And I value all the wonderful CF friends that you all have become to me, and am so thankful and grateful for all of you.

  2. Very good post!! I would not ever trade anything for the relationships I have with fellow CFers! It makes me sad, but so angry when we lose precious lives! I didn't lose close CFers until this year, and like you, I find myself thinking about them ALL the time! I am so thankful for all the wonderful friendships!

  3. Well said, Amy. I find myself having to take a break from the CF community every so often. It's just too much reality. But I value my CF friends and they are the only ones that really understand what it's like to live with this disease. I wouldn't trade them for anything.

  4. Well said, Amy! It sucks to lose other with this disease, and like you I worry about how many I will see pass before their time.

  5. Well said Amy. I'm stunned. My heart breaks for everyone. These on-line relationships are special in so many unique ways. I think the fact that CF is such a totally isolating disease makes it so much more unfair. Funny sometimes when I am talking about one of our CF friends with a RL friend they don't realize I've never been face to face.
    Tak Care Amy

  6. Thank you for sharing. I often wonder why we have to face these deaths, it always seems, all at one time. A hard weekend, a hard month, a hard year.

    Thank you for writing how you feel about your online CF friends. I only have a few, but hope to have more soon.

    You are one of my new ones :)


  7. amen, cyster. this is all just so sad, so many lives taken before their time by this stupid disease. i agree that it's hard to watch CF friends go through all of this, but it's also part of what makes our friendships so valuable -- the shared struggle and all these feelings that no one else seems to really understand.

    i'm so thankful for you guys :)

  8. I agree. I find myself thinking about my cystic online buddies all the time. Everyone has really become a part of my heart too!

    ~ Cowtown, Kelly

  9. So very true! Life is now, Live each moment!!

  10. Nicely written, Bitster. Thanks for writing it; it clearly hit home for a lot of ppl.

    None of this shit makes any kind of normal sense, does it? Sometimes it seems the only sane response is madness.


  11. hey amy, this weekend was a very rough one. i felt like ava was my little sis. we emailed each other alot on facebook, i remember when she told me about getting listed. i went to cf camp when i was younger from the ages of 8 to 21. i've known many cfers who have passed and its never gotten easier. i feel like they are still with me everyday though. i pray every night for them. i have dreams that i'm back at camp with them so happy and laughing. i fight on in their memory and i feel like they are behind me pushing me to do better. i love having all my new cf friends online. your post was great. :)