Frustrated is a bit of an understatement.
Yesterday was a bad day. I don't remember the last time my chest felt so crap. It was like someone had poured glue down into my right lung, I just couldn't get a deep breath in it was so tight. I did everything I could to try and shift the stuff that was stuck - nebs, inhalers, physio, fluids, taking the dog a walk - all of which worked a bit eventually but it wasn't straight forward. Literally 1 minute into my walk with Fionn I started having haemoptysis and coughed so much that I vomited. Nice. The rest of the day I had super gross sounding cough and continued to have blood, in varying amounts, til about 5/6pm (after it starting at lunch time).
I'm annoyed cause it's a big change for me but I feel like I'm the only person taking it seriously. The fact it's "normal" in CF patients doesn't matter to me. I want to know why it's happening and I want it to stop! I don't want to become part of the group of CF patients for whom coughing up blood becomes a regular and normal thing. It's not normal, end of.
I'm also frustrated because it puts me off doing the things I love. I don't want to sing for fear of setting it off again. I don't want to go for a walk/run because it'll probably start it again too. I know I need to do these things to keep my chest in working order, but it seems counter productive if it's going to cause bleeding, after which I'm not supposed to do much physio, and certainly not allowed to use my PEP, and nebs aren't advisable either. Point?
On another note, it's less than 3 weeks til the Arran Music Festival. I'm singing, playing piano solo, accompanying singers, and just generally running about like a headless chicken for a night! I'm hoping it'll be a fruitful first festival for me and maybe result in some more work. Fingers crossed.
So, I'm off to get dressed and take Fionn a walk before going a rehearsal for the festival and taking a few lessons later.
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Bug hugs! I can sympathise, I hate coughing up blood. It's frustrating when you are trying to do something positive like excersise and it turns into a negative.
ReplyDeleteThey usually say give stuff like Dnase or hypertonic saline a miss for 24 hours after hemos as it'll just aggravate it. What have your team said? Am I right or wrong in thinking that hemos can be a sign of infection, at least for those who it isn't common for? (memory of a sodding sieve here!) But yeah its horrible isn't it! The only thing Ive found is that cold water can help stop it/decrease the amount that seems to be spewing forth. If your team dismiss it then raise hell, I definitely agree that it isn't something you should just have to get used to xxx
ReplyDeleteI just came off ivs 2 weeks ago which I only really went on cause of hemos. They've hardly mentioned it tbh, just say it can happen, might be infection might not be. Helpful! If it happens again soon im phoning them again. Feel like im always phoning xxx
DeleteAw no! I'd be worried if I had blood in my sputum as it never happens to me, so you have a right to be worried and it should be taken seriously xx
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