So anyway, they'd given me gaviscon for the reflux, to go on top of the omeprazole I take every day. It was probably the easiest thing to give me but i certainly haven't maxed out reflux meds so I don't know why another tablet wasn't offered instead. I figured the high heart rate I was having and the off feeling was simply just the reflux or maybe even orkambi withdrawal, seeing as all of this started just days after coming off a drug I'd been on for 2 1/2 years.
The next several weeks were horrific. All of a sudden on Saturday a week after coming home from my 2nd admission, my appetite went, and I felt odd. I was tired and my heart was beating faster than my usual resting heart rate was and it was beating so hard it was basically like having constant palpitations - like when you've been running around and you're out of breath and you can feel your heart hammering away for a minute until it settles. Except this never let up. It also make me feel horrifically sick. By Sunday, I still wasn't able to eat more than bites at a time for a meal. I was beyond hungry but couldn't stomach food. Sunday night, we decided to go to hospital. My doctor was off paternity leave the next day and being at home was just making me panic, so i figured if i was admitted, i might see him first thing.
I had to go through Emergency Admissions Unit as there were no beds on the ward. I hate EAU, because when you have a specific illness, its such a pain in the arse. They're not specialists, they're general doctors and nurses who don't have a clue about CF, so they bring you your creon with your morning meds (when you haven't eaten) and the doctor tells you to breathe in deeper when listening to your chest, not realising you've got half the lung function someone else your age and height normally has. Also, having been on a research trial, no one knew what I was on about when I said 'orkambi' and the junior doctors weren't half faffing on with my boxes of it, despite the fact it says nothing helpful on there. I even had the ultimate annoyance of an F1 leaving a cannula in my arm over night after taking bloods 'in case we need more'. They didn't and I was very pissed off as he left it in my one good vein. That vein doesn't mind being stabbed multiple times, but leaving a cannula in could have fucked it quite nicely. Luckily it didn't but I had a go at anyone who walked into my room to make them take it out or else I would. I had an xray and a quick ECG that night too (my palpitations had calmed down typically but they never seem to show anything which was more infuriating) and I also ended up on O2 at some point during the night.
I eventually got a bed in the afternoon on my ward and then saw my consultant about 7pm that night (I imagine having been off for a couple of weeks, he had a right workload to return to, hence not seeing him earlier). He had no idea what the problem was, and we were going to talk about it more at my research appointment the next day (bless my research nurse, every time I've been admitted she's come to find me and have a chat and see whats up). So I went along to research, both my nurse and my cons couldn't figure out the problem but also didn't think it was because of orkambi but also had no idea what else it could be.
In total I spent 6 days in hospital this time. I wasn't eating, in fact, some days seemed to get even worse. Each time I felt a bit better and then got worse again, it was quite petrifying as i had no idea how long it would last or if it would even go away. The only thing we tried was anti anxiety meds one night, which just knocked me out. I was also on IVs but I was due them anyway, which i think may have explained the sats, but i also blame my heart beating bout 30-40 beats faster per minute than it usually does. It was a bit annoying they didn't do anything else. The dietitian didn't help as she said they don't give you temporary NG tubes just cos you haven't eaten for a week (don't mind me, the weights just falling off at an alarming rate but sure i won't give you anything else to bloody help) and her idea of helping was to give me some toast when i said I'd try some, but she came back with something that was stone cold and cremated. The HCAs could make perfect toast so i don't know why this woman decided to crank the toaster up to the max level then give it to me.
The whole time, staff from clinic were coming up to chat but mostly just to try and get me to agree to go on Orkambi. My doctor initially thought this was me 'going back to how I was' which i debunked, as I've never had a fast heart rate, a complete and utter loss of appetite like I had, nor palpitations that lasted for hours and were so strong you could see my clothes twitching. However, going back on orkambi was their only idea. By Thursday I was exhausted and pissed off. I agreed to go back on it when my doctor came in to drop off my CF holiday fund medical form - which we applied to for some extra money towards Orlando, as its such an expensive, and probably once in a lifetime holiday for us.
I went back on Orkambi on Friday, and oddly felt better by the evening. Which made me think even harder that it must have been withdrawal. I went home, and after some colossal fuck up with my IV deliveries, settled back to normal. I didn't feel 100% in the slightest, but felt a damn sight better than I had been. About a week later though at the weekend, i started feeling shit again. The palpitations returned, with dizziness this time. I'd still been tired all week and had still felt quite sick so that wasn't new, but it did seem to intensify. Then the following thursday, by the evening I felt like me again. It was quite bizarre, I'd spent the evening organising my craft stuff on my new desk we've put in the conservatory, and everything seemed normal. I was a bit off on Friday and needed a lift to clinic, as I was still too dizzy to drive, and I'd been thinking all thursday and friday morning, with help from my little sister who'd said the day before "Is there anything new you've been taking?"
I couldn't think of anything new. I was sure there hadn't been. Then i realised the only new thing, that I was still taking, was gaviscon. The palpitations and sickness only started after I'd been given my first lot, the first admission I had. I hadn't taken it for a few days in hospital (I had one 10ml syringe of it a couple of days into the stay) and improved after a few days of not touching the stuff. I had some at home so continued taking it then (which explains why the problems never totally cleared up and then returned in full) and then for some reason i'd not taken any for a few days before the Thursday when I felt better. I looked up the side effects. Under the more rare side effects it included loss of appetite, unusual tiredness and muscle weakness as a sign of low phosphate. Rarer side effects (which are also 'tell your doctor immediately types) included irregular heartbeat, dizziness and trouble breathing.
Obviously the side effect list was longer but I had all of these. To be fair, my symptoms were vague and could have been anything - I had a GP appt and my cons had said to check my thyroid which turned out to be perfect, but my infection levels were 20 (12 and below is fine) which made me snort when the GP phoned us for me to come in that afternoon to discuss the possible infection. When I explained I'd just finished IVs and have Pseudo in my lungs, she seemed much happier with leaving it thankfully.
Most people at clinic seemed happy with my theory, or at least happy to send me home to see if I continue to improve. At least at that point I was eating again and my heart rate was going more back to normal, so there wasn't really a need to re-admit me or anything thankfully. I really dislike the dietitian though. I asked why I wasn't given an NG when I wasn't eating and wasn't showing signs of improvement (the only time I ate more than 1-2 bites of a meal was after I'd been discharged) and she just said they 'dont do that'. My weight is still okay - 47.7kg which means I'd lost about 4kg in the last few weeks, but that wasn't enough to get a reaction out of her or for her to stop mumbling and putting her hand over her mouth. I'm seriously going to ask the other dietitian (thankfully theres only 2 on the team) if I can only see her and not little miss mumbles.
Since clinic last week, I've continued to improve and now I'd say I'm 99% back to normal. I still feel a bit sick if I eat too quick or too many sweets, but i'm more focusing on the fact I can actually eat now! And I can finish a cup of tea too - for some reason I couldn't even stomach tea when I was ill so that made me realise I'd only know i was okay when I could drink it and be fine.
So 6 weeks of hell, most of it from some ridiculous pink goo, is now behind me. I still get a slight wave of worry when my heart beats faster for no reason, and I have to keep checking that my pulse is normal if i think i can feel palpitations - most of the time its in my head but I had them so constantly for weeks that i got used to feeling them so keep imagining them still there. I had some CF friends keep me virtual company with messages and checking on me. And my immediate family - parents and sisters, my boyfriend and his mum were all lovely and gave me lifts, looked after me etc. I just still feel so jipped off that no other friends really gave a shit. I was genuinely terrified and half wondered if i was either gonna have a heart attack, puke my heart up, or have something horribly wrong with me, and even after 3 admissions, I don't even get a text, or a comment on facebook. All the time I see people complaining they're lonely or they're ill and they have people rush over to help. I feel like the few people I call friends have really let me down and I'm not sure what I did to deserve to be cared about so little. Its a shame as it makes me so bitter. I know people have lives and they get wrapped up in them, but I thought 'hospital admission and mystery symptoms' would be enough to get a small response - even after asking people to visit. Sucks.
I also have to have a heart tracer done to make sure there's no issue, although that was mostly for the palpitations which have stopped now. It took so long to get the appointment, I have one for my local hospital in mid april, and my cons put a request in for one at that hospital as the list should be shorter, but i'm mostly wondering if its redundant now. I also have my gastroscopy this month, also a bit pointless as the stomach pain went away but we agreed I should have it anyway just in case the pain was caused by something else. What I really need is a 24hr PH test to make sure I'm not aspirating into my lungs, I'm not sure the dietitian was actually listening though, she looked more amused. I think she's new to dealing with CF patients and having them actually know what they need.
Things I do to keep myself busy after 6am IVs. "rest" doesn't happen in hosp.
my new craft room!