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Wednesday, November 4, 2009

I was a CFer coughing blood for Halloween

Well just as I was about to put on my fab Kate Goselin wig for my Halloween outing (my BF was metally preparing himself for the onslaught of black eyeliner that would soon form his side burns) I felt a nice pop in my lungs and out came blood.


I hadn't seen this much since 2007.


So 911 it was and off to the ER.

Luckily things calmed down in a few hours and when all was said and done it was prob 1/3 of a cup of blood. Probably not that much to you hemo vets, but scary for me. As my doc says, 1/3 cup can turn into a full cup in a blink of an eye.

So, today, Wednesday right? I'm loosing track of time with the hospital transfers and atavan PICC insertions :) today my pulm will look at the CT scan an see if we can do some exploring with the interventional radiologist.

Never fun to think about but I've had too many of these bleeds to not attempt to fix things.

I'll keep you posted on any developments!


  1. I'm sorry to hear all this Amy! It sounds very scary when it happens.

    Thinking of you.

  2. Dangit Amy!!!! Tell your lungs to stop messing around :) Please keep us updated. Thinking about you.


  3. Amy,

    I've posted this on the forums before, but here it is again, in case this helps.

    I had three embolizations for hemoptysis. I was still bleeding even after the 3rd embolization. I finally decided to stop Pulmozyme. When I stopped it, the bleeding stopped too. Unfortunately, my lung function went down fast without it. I added it back, and function came back to baseline. I have found through experimentation, that I can take Pulmozyme once every three days and not have lung function affected while keeping the bleeding away. Since I started doing this, I've been problem free for 3 years now, with the exception of minor streaks when I've been sick.

    This may not be your problem, but it is worth a try to see. I'm so sorry you are going through this. I hated this worse than anything. My heart started beating fast just reading about it happening to you!


  4. ugh, so sorry to hear this. Hemo is such a nasty, creepy, no-easy-way-to-play-down kind of thing, no matter how big or small, or how many times it happens (you never get "used to it", really). That gurggly crackle is just about the worst feeling in the world.

    And what a waste of an awesome, timely costume! :o)

    Hope you get everything sorted out soon, IR or not. You're in my thoughts!

  5. Oh Amy, I'm sorry to read this. CF always picks the fun nights to rear its ugly head, huh?

    Seriously, I know 1/3 of a cup would freak me out! Glad you're getting the help you need now and hope you feel much better soon!

    You'll be in my thoughts!

  6. Hey Amy my blogger showed the post that it looks like you tried to take back but since I saw it I will send my thoughts here and then you can just choose not to publish them. I had the same sort of 'issue' with my doctor. I have a long standing mis-trust of doctors until a repor has been built and I feel I can trust them and after years of them treating me to have them tell me not that I was over reacting per se but that I was 'working myself into it' and getting depressed etc. I wasnt and I felt very unhappy about that. I could FEEL there was something wrong and we agreed to disagree and I went on my way. Then a week later when what I knew would happen did happen and it got worse with more pleurisy and hemoptysis I did feel I coudl not trust them and they would not take me seriously so that is what ended up in me leaving and going to a new clinic.

    Now I am not suggesting that you leave of course your doctors sound really great. My clinic has since lost adult accredidation partially by choice but i know I made the right decision.

    I guess doctors get the right to have a bad day too and maybe he is not seeing it from your perspective. It sounds like good dialogue was had throughout this time but maybe he was talking about bleeding in greater quantities or not on weekends who knows. When I had my problems I set up an actual appointment slot to 'talk' maybe you could do this?

    I do believe there are some people where bleeding may not be a sign of infection maybe he is leaning that way?

    I am a strong personality and I can tell you are as well so is he more abliging and/or meek? Maybe each time was one thing he said a bit more than he agreed with and now he is into alot more he doesnt agree with and that is why he sent the social worker in?

    Anyway just know I'm thinking of you and you can drop me a line any time on cf2 or cf.com or my blog.

    have a better day

    oh and NO I dont think you are freaking out at ALL

  7. Sorry to hear about that Amy!! I hope that it all gets figured out. Hemo is scary. I have been a bit accustomed to it (since Gess doesn't even call the doc if it is less than 1/2 cup), but any bleed can be dangerous and scary.