One of those things

Hemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with shit lungs. I won't pretend to be an expert on the subject, I hardly am. What I am, is a massive wuss.

Those people who go 'Oh you're so brave!' when they hear of things you go through with CF, or claim 'I could never cope with that', the thing is, when a procedure, or illness, or treatment is presented to you, it's often not a choice. You don't get to go 'Actually, I'd rather not'.

This brings me back to hemos. Coughing up blood is petrifying. It never used to happen to me much. Maybe once every couple of years. Before this year I'd hedge a good bet it had probably happened only enough times to count on one hand, a couple of those occurrences being pure blood, more often, just bloody streaked sputum (lush, yes). Every single time, it only happened once. Then June happened.

We've already gone through this in the previous post, so I wont repeat myself (I'm trying to break a habit of a lifetime!) but that was the first time hemos had repeatedly continued, and it did for 42 hours, almost like my lungs (or my vessels?) were trying to prove a point. I had the embolisation the following month as it was simply too much blood and too prolonged to leave (I've since seen my CT scan and the responsible vessel was fairly big, as was what looked like a pool of blood around it!). That went off without a hitch and i got my wish to be knocked out. It was quite a hectic week beforehand, as I had an anaesthetist appointment so they could get all the tests and pre op info from me, as well as needing to start IVs as soon as the anaesthetist agreed on a date and also revising for my last exam of my bookkeeping course - which I ended up taking the morning of my embo.

I limped for 2 weeks after and my leg was sore at times, but its amazing to think they could go through a vein (in your crotch, another reason why I was glad I was asleep!) and find the vessel, and sort of glue it shut.

I was fine immediately after, even with the anaesthetic. It made me a bit slow and drowsy for an hour or two after, but once I'd had a drink and even enjoyed a hospital sandwich, I was fine. Its strange as my tutor insisted I had the exam before my op, saying I couldn't have it a few days after due to anaesthetic staying in your system for a week.

On Tuesday night this week, I was reading facebook and read someone's post in a CF group about hemos. It reminded me of my own, and I hate thinking about it. Honestly it seems fairly surreal, to go from coughing up not exactly small amounts of bright red blood, to going back to your normal life. I coughed, and panicked. I felt a familiar gurgle. I had a tiny hemo - not even enough to shout about, but it was watered down blood. The fact that its the first time since the big one though, made me nearly shit myself in fear, I don't want to go through that again.

Thankfully I have tranexamic acid in the house now, and obviously know all the cold water, no physio or nebs tips too. John had to calm me down though, as I couldn't stop shaking. I woke up every hour, worrying. I also emailed my dr in the middle of the night who replied at 8am to say the usual 'keep calm, take the tranexamic acid and if it happens again, come straight in'.

It hasn't happened since *bangs every piece of wood in the house* but its so horrible. It never used to even phase me. I knew it was something that could happen, but never really thought it would get worse than a one off. Although last year, two friends died from major hemos, and when I have one, now thats all I can think of, even though I have a handful of friends who have frequent hemos, and are all fine, despite it being a pain in the arse. Personally I'd rather be in the club of 'It happened once, I had the embo, and I've never had one again'.

Like I said, it never used to happen much, then this year its been maybe 4 or 5 times, all only once (obviously excepting June). We don't know why I've had more frequent hemos this year, but i have been on a medical trial since Dec, and the patient information said to mention it to your study nurse if you were to ever cough up blood. Now I don't think it would say that if it wasn't a possible side effect? My dr isn't sure either way, but I've since come off the trial, as he doesn't think it's helped me overall. I was only 8 weeks from finishing anyway so it doesn't make a massive amount of difference. I also have suspected gallstones (this is possibly what caused me a lot of pain last year, resulting in suspected bad reflux, taking gaviscon and proceeding down an avenue of hell for 6 weeks) and I have a CT scan on Tuesday to see if they've grown, as I've had pain since mid august in my stomach. No one in clinic could think of what it is based on my description, until my dr pulled up last years ultrasound that showed tiny gallstones. So the CT is to see if they've grown.

Joy.