Sunday, about 3am, I woke up with a gurgling feeling and what I thought was normal, disgusting but run of the mill sputum in my throat. I did think it felt warmer than it usually is though... went to the bathroom and saw it was blood. Bright red blood. Horrifying. It came up a few more times too and i remembered the advice from friends about cold water and ice (as well as no physio, nebs or inhalers for 24 hours), and popped to the kitchen to get some. After I drank it I fell back to sleep... to wake up at 7am and for it to happen again.
Highly unimpressed at my lungs and freaking out a smidge, i went to get more ice. The cat just looked at me odd as i sat on the bench crunching at ice cubes. But it didn't help and it happened again at 9am. Its hard to know what to do in these situations. Its not normal for me - at the most I've only ever coughed up a small amount, although more often (in these already rare occasions) its just blood streaked sputum. Those instances aren't usually much to worry about - with all the coughing we do and the repeated infections, its easy to cause small tears or scratch your throat and bleed a bit. But that doesn't cause repeated haemoptysis. This is more likely a burst blood vessel.
I kept myself cool, with a fan on me, as well as continuing at the ice (and was running out quite quickly at this rate!) and it seemed to be okay. We had a planned a picnic with John's family at the Wallington National Trust. We went and things were fine, sat in the shade and ate loads of sausage rolls and grapes. Decided to go for a short walk towards the play park for John's niece, and half way there, yep, gurgle. I couldn't not spit it out so aimed for some grass and was shitting it when it was still fresh blood. We'd already called the CF ward at this point, a few hours ago to see what they suggested after 3 hemos. They didn't suggest much! The ward was full, they asked the on call doctor (who apparently said nothing) and then just said i should go to A&E if i needed to come in. I found that odd as in the past they've told me to go to emergency admissions and phoned ahead so they knew I was coming. EAU is the place you go after A&E if they have to find a bed for you anyway.
So yes, sadly I had to go a A&E! (not before chucking up my picnic though, the coughing and the fact that i was terrified made my food sit badly in my tummy and it came up sharpish). We went to my normal hospital, even though theres a "super hospital" that was closer. I needed to be in the same hospital as my team, and being at a hospital half an hour away from it wasn't going to do me any favours.
A&E was shit. They sort of, couldn't have cared less, even though i had a literal bowl of blood covered with tissues on my lap while i sat pathetically in the wheelchair. It was quite quiet too. I was in triage quite quick, but went back to the waiting room and waited nearly 1 1/2 - 2 hours. Not to sound like a rank pulling bitch, but people with broken ankles were going in before me, after coming in after me and having already been through xray, meanwhile my lungs had been actively bleeding most of the journey there.
I eventually went through to a small clinic-esque type room. And waited even longer. After maybe 30 mins or longer I saw my doctor and she just ordered bloods and an xray. That came back clear and there were no odd sounds when she listened to my chest (I can't work out if I'm a jammy bitch or they all have defective stethoscopes as no one can generally hear anything in my lungs). My bloods eventually came back to a CRP of 19, which also meant that infection was unlikely the cause (however CRP can be a few days delayed. Id only finished ivs about 3 weeks before though).
Talk of a 'lung scan' came up as well as a bronch, I shot that one down as a bad idea (as did some CF friends I was chatting to online) and also told them that in CF treatment at least, the normal way to proceed is tranexamic acid. This was met with, no we need to know where it coming from before we stop it. That one didn't sit well for me, I didn't know how much blood I'd lost by then but i didn't like the idea of it continuing, then shoving a camera down and potentially aggravating it.
I didn't do anything else there. I was sent to the assessment suite, which turned out to be another name for EAU. Joy. As if i havent spent almost every admission without at least a 24hr pit stop there. When you have cf, its not easy to be tossed around on wards with doctors and nurses barely knowing the basics on CF, as they may find things about your treatment regime or tablets you have or require, a bit out of the ordinary. Their refusal to prescribe tranexamic acid, or do anything else, was a prime example.
I get stressed in hospital when i have different doctors, and I'm sure you can see why!
Sunday night/ monday very early am, I emailed my consultant as i wasn't sure how fast word travels in hospitals when your patients arent on their usual wards. He sent me a reply back around 8am - before his shift had even started - saying to stay calm, not to let anyone do a bronch and he would prescribe the tranexamic acid as soon as he was in, and see me after clinic. And he did, as 3 doctors came in an hour later, and were talking about prescribing it. One had a laptop with her, and saw that the request was already sent. My team were impressed that I'd emailed and that it was a really good idea as it would have taken a lot longer for them to find out I was in, and even longer to get the treatment sorted.
I didn't do much in between seeing these doctors except start hacking up more blood again. It never gets easier or less scary. The stress of knowing exactly what treatment I needed and the fact that no one would give it to me was even more stressful. Add that onto a bad nights sleep from anxiety from the whole thing, a fairly unpleasant hospital bed (which I'm still suffering for!) and the fact that I couldn't for the life of me find my light switch. I was pretty hungry too. No one bothers to find out if you've eaten when you're bouncing between wards.
Monday was fairly uneventful. I had my room door open for a fairly obvious reason, and literally mid coughing up blood, a HCA asked if she could shut my door. I was alone in my room, and she actually just wanted to shut me in there alone, presumably because it was annoying her? I told her (between mouthfuls of blood) its open for a reason and she gave me a shitty look. I should have thrown my bowl at her. My consultant came around lunch time and saw my bowl, immediately said that it was too much, which I knew, but hearing it from your doctor is another thing. He also mentioned how if it wasn't stopping, embolisation would be the way to go. I was hoping not to hear that, or not hear it so soon, but at the same time I did expect it to be a suggested option of treatment. I know vaguely what it involves and it didn't really help keep me calm! He also said I needed a CT scan, and I actually got it within the hour of him saying that.
I'm impressed I was able to lie flat and still for 10 minutes, even with the ever pleasant CT dye which makes you feel warm and like you've pissed yourself, but the changing colours on the inside of the scanner were quite nice to watch so it wasn't an ordeal or anything. He also got the cannula in on the first go (although I had to tell him twice he was standing at the wrong arm if he wanted a decent vein. Why do they always go for the left?) I also got some vitamin K through the cannula when I was back on the ward as that helps blood to clot too. That sufficiently blocked the poor sod before she even got to flush it, but they left it in anyway.
When he came back around to see me that evening, he said the CT showed a vessel in the upper right lobe that looked bigger than normal. Annoyingly I don't have any previous CTs to compare to. But that would be the likely culprit which would be concise with me feeling the gurgle high up, so thats where they'd at least start with if I needed the embolisation, and if the blood still didn't stop soon, I'd get it before I went home. They were looking for a bed for me and found a cubicle on my usual ward 52, but several hours later i was still on EAU, and my bed on 52 vanished and apparently moved to 51. I did get moved up around 9pm and hemo'd all the way up while my porter probably tried to look anywhere except down to my bowl. But thankfully that was the last one. I lost count how many times it happened. Sometimes it was up to 7 hours between, and others 30 minutes. My time on 51 was nice and boring, a lovely nurse brought me a fan and I had typically disgusting food. I had to be clear of hemos for 24 hours before going home which meant tuesday at 9pm, but obviously no one leaves that late, and I had things to be sorted on wednesday - I had to do physio, nebs and inhalers whilst being watched to make sure it didn't start again, and had to wait a shocking amount of time for one box of tablets.
Thankfully Ive been home since, I still get scared when I cough hard, and I'm still coughing up streaky crap but its old blood that was to be expected - with the amount I lost theres probably several old puddles of the stuff all over my poor lungs. I'm likely to need an embolisation eventually, probably to make sure it doesn't happen again, as for me to hemo so badly, and for so long, given it never happens in the first place, it was very strange.
We never knew a direct cause either, but its usually guess work unless you're actively rampant with infection. We narrowed it down to the heat, the hayfever causing my cough to be dry and scratchy, and possibly left over infection from my ivs.
Personally, I'd not recommend adding constant haemoptysis to your hobbies. Its vile.
And some photos!
The picnic that was short lived!
Poppy! She was melting on the hot days. Literally into the sofa
Me, when my lungs aren't acting up! I've given myself the week off any exercise
My tea on monday... Which didn't get eaten. Funny that.
Yes I'm now one of those people who spam you with pet photos
My amazing view...