✨Hemoptysis✨ 2.0

Ya girl's backkkkk, after another massive hiatus due to a somewhat depressing year or however long it's been. I’ve talked about this coughing blood business at length before on this blog and I shall continue to do so until it no longer causes me problems. So, strap yourselves in whilst I bang on again.

I meant to write about this particular experience way back at Christmas time but naturally I left an assignment until the last minute so that took priority. The idea of writing about this completely slipped my mind until I went to the John Radcliffe the other day for a standard port flush. This was the first time I’d been to the hospital since the whole A&E ordeal in December and a very peculiar feeling dawned on me. I pulled into a car parking space, stared at the hospital and soon enough, my entire body just felt as though it seized up, my palms started to clam up, I could feel the blood just sink through my body, basically the EXACT feelings and emotions I felt at the time of the ordeal. All I can describe it as are “trauma tingles”, a sudden rush of absolute dread and as though I was in immediate danger, admittedly not quite like the being abducted/run over by a car type danger but a “I’m about to start spewing blood” type danger and panic.

To paint the picture, two weeks before Christmas, I was coughing a considerable bit more than usual, still wasn’t too much compared to what I was like before Kaftrio, but enough to be mindful but not worried. Anyway, I get home for the Christmas holidays and the first day back (I won’t go into detail for legal reasons) I got body slammed, and instantaneously, a plug of blood came flying out of a cough. Now, this is quite a common occurrence for myself, especially since starting Kaftrio so I wasn’t concerned but I did just sit down for a bit watching Robin Hood: Prince of Thieves (I now can’t watch this film without an overwhelming feeling of anxiety). And something just felt ever so slightly off but I didn't quite register why, but before I knew it, my body shot up and took me off to the toilet. I’ve become exceptionally good at letting my body do its thing, almost as though I go into autopilot mode and switch off until the shock has subsided. I’ve got absolutely no scientific backing to any of this but for me, it seems like a real thing.

So, the first spew of blood must’ve happened at approximately 19:30 ish, I’ll attach a photo below if anyone wants to see what it’s all about. I think this initial episode was going on for around half an hour, then it slowed down for a few hours (I was desperately resisting the urge to feel relieved) and then around 22:00, another explosive cough paved the way for even more spews of blood; when I say “spews”, I mean like brazened fountains of fresh blood that create a literal pool.

Although we’ve dealt with this once, if not, twice before, the fear that consumes you can never be rationalised, despite knowing exactly what was causing it. I was hunched over the toilet, shaking, and said to my mum “what if this kills me”, and I truly believed that in my gut, whether it’d be due to excessive blood loss or a blood clot, whatever it was, my only concern at that very moment was quite literally surviving. I know it sounds awfully dramatic, but I did not care about anything in this universe apart from getting through until the morning. And that is utterly terrifying. I don’t like to vocally express the extremities of my emotions, probably down to the potential judgements I think I’d be subjected to, but I want to be completely about what those moments entailed.

Anyway, so we tried to go to sleep, hoping the lowered heart rate, blood pressure and shallower breathes would allow the blood to slow down, but no, a few hours later, more blood came flying up, with little evidence to suggest it was slowing down at all. At this point, it had been a good seven hours of fresh blood, so as much as I detest A&E, ambulances (and paramedics lol #iykyk), we called 999 but long story short, she said “no sorry, you’re not a priority, get there yourself” (in a kinder manner than that but it really hacked me off). So, at three o’clock in the morning, off Father and I go to the John Radcliffe A&E, overnight bag packed, eagerly awaiting a four hour wait, trying to guess what everyone else would be in for (still coughing blood the whole time of course).

Fast forward one x-ray, one CT scan, many blood tests and several hours later, we established the blood was caused from a tear in one of my bronchial arteries. The cause of this was still a bit of a mystery because my infection levels at the time were as they should be, nothing as far as we could see was abnormal apart from this massive body slam that clearly sent shock waves through my body. If I remember correctly, I was admitted onto the respiratory ward for three nights just for monitoring in case it all went a bit tits up again. And just a little side note here - they kept my cannula in for the WHOLE FOUR DAYS, which always results in at least one breakdown a day purely down to the sensory overload of having a needle shoved in your arm. If you've ever had a cannula, I'm sure you know exactly what I mean.

My consultant and physio sat down and explained that if the bleeding restarted, a procedure called an “bronchial artery embolisation” would be necessary to fix the issue which entailed a rod being inserted into my groin and threaded up into my lung in attempt to glue the tear in my artery back together (when I tell you I can literally feel this happening just thinking about it). (I tried to find an image of this but there wasn't anything that depicted it particularly well). Oh, AND I’d be AWAKE, sedated yes, but not knocked out out, which again, the fear flowing through my body at that point was palpable.

However, the good news, that was not necessary and hasn’t been since, this isn't pessimistic of me but it is likely that at some point in my life, this will happen again and the embolisation procedure might be necessary. So, every single cough or slight pain in my lungs is followed by overwhelming anxiety and dread, streaming with tears in anticipation of another A&E trip, spewing blood in another the waiting room.

So, in conclusion, although I have experienced some pretty unpleasant CF related incidents, according to my body's involuntary reactions when reminded of this particular ordeal, this one seemed to have really rattled me the most. Buuuttt we move, every morning and night, I just think how grateful I am to be breathing easily, tucked up happily in my own bed.