CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

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Blood, blood and more blood

3am = coughing up blood time I guess. I coughed up about 15-20 cc. My CF Doctor came to see me around 8am and decided he wanted to do a bronch to see where the blood was coming from. I went down for the bronch at 9:15am and I was back in my room by 11:30am. He said he didn’t see any active bleed areas. His next thought was that it was drainage from my sinuses/nose. He looked and said he saw some blood there. 

I was moved out of the CVICU to the regular CF floor/unit. Then shortly after I got to my room transport was here to take me to the ENT. He looked up my nose and there wasn’t anything except 1 tiny spot that he cauterized. I was wheeled to the waiting room to wait for transport to take me back to my room, I started coughing up blood again. (This was around 5pm)

Now, as I am trying to type this up on my phone because the wifi at the hospital is pretty much non-existant, I started coughing up even more blood.

I am so frustrated because it’s feels like they don’t believe me that I’m coughing it up but that it’s something else. I feel the “gurgle” in my chest and then it’s the involuntary cough that brings the blood up.

Hopefully I will get some answers tomorrow because as of right now I  want to go to sleep (as if that were possible) until tomorrow and wake up with an answer. I have a feeling I will have yet another bleed in the middle of the night. I’m still coughing blood up right now. So flipping frustrating. I don’t feel good as it is then this. Ugh

I’ll update more tomorrow if I know anything by then.

Until next time…

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2 responses to “Blood, blood and more blood”

  1. Margaret Avatar
    Margaret

    I don’t know why they never believe their CFers because y’all know your bodies. Until they literally saw Megan cough up over a cup, they doubted her too. She had to have eight embolizations and has twelve massive bleeds. But they always told her she wouldn’t be able to feel it. She said it would feel like a flick, a pop, and a gurgle–then it would just come up. She always knew when it was about to happen. I think they don’t know what to do, so they don’t choose to believe it. I’m so sorry you’re going they this. Tell them you know your body. They never saw it on Megans bronchus either and it was her arteries bleeding. Take care and I’ll be praying. I love you.

    Reply
  2. PatriciaB Avatar
    PatriciaB

    The not so fun part, do your part to keep on them. God speed answers are coming soon.

    Reply

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