I had a clinic appointment on Friday, usual crack and annual blood results from 3 weeks ago. Interestingly, I started IVs on that appointment as I felt beyond awful, and actually felt like crawling to the clinic I was constantly knackered with a shitty cough from a cold I'd caught during my previous IVs (about a month before) so basically wanted to start IVs immediately, not even a few days later. This meant that my IVs came from BUPA, home of the cock ups, instead of the hospital pharmacy like usual.
First, no one actaully asked me what I needed ordering (I have like a lifetimes supply of saline, needles and syringes at the moment) so I got even more of those. Secondly, they sent both IVs in intermates as opposed to one intermate and one syringe, so IVs were taking about an hour and a half to complete. Plus, when you get intermates from BUPA, they don't prime the line, so you have to make sure you remember to let the drug go all the way to the end of the line before connecting, which I almost always nearly forget to do. We managed to get the second and third (as I still felt crappy) week in one intermate/one syringe though which made things easier and quicker. Plus, you do worry that you're accidentally going to give yourself two doses of colo or ceft as they look identical other than the name printed on the sticker. With me being me, the person who can cut themselves on a yoghurt pot lid, I think its necessary to double check these things as a precaution.
They also managed to mess the delivery up by sending 7 doses (instead of 14) for the third week, after the hospital nearly ordered another 2 weeks instead. Someone must have mis heard '7 days' for '7 doses' and I ended up needing a further 2 deliveries of more IVs, and cancelling another one that would have been 3 days after I'd finished.
And you wonder why I have no faith in BUPA!
Anyhoo, so I came back to hospital 3 weeks later, quite interested in what my bloods would show. Weirdly, my CRP (infection levels) were at an amazingly low 5. Anything below 10 (or is it 12?) is brilliant, anything higher suggests infection. I'm obviously happy that it was really low and well into the acceptable levels, but it confused the absolute hell out of me as I genuinely felt awful when they took my bloods that day, and had done basically since I'd finished my previous IVs. There was something else though, which has nicely explained why I've been so tired, out of breath (especially strange right after successful IVs) and look like I've been repeatedly punched in the nose from being so exhausted - My haemoglobin levels were 80 - they should be between 115 and 145 or something (I think anyway, and I don't know what they measure in at my hospital so googling is getting me jack shit. Wiki says 121 to 151 g/L so mine are still low by that result). So I'm anaemic and have been plonked on iron tablets to help. I'm really hoping they do the job as I'm so annoyed by feeling tired when I've not done much, or just done what I usually did and felt fine previously. I think I read something about haemoglobin also being involved with oxygen in the blood in some way, so I wonder if that could explain my headaches (especially when I'm tired after a long day) or if it was regular low sats from busy days which have resulted in said headaches. Either way they can piss off! I did request another exercise tolerance thingy so they can see what my sats do when I walk around though. Its a bit irritating dragging behind, tired and out of breath and having to have piggybacks all the time.
The low haemoglobin results also meant I had loads of other results in the red too - Platelet count, haematocrit, RBC, MCV, MCH, white blood count, neutrophil count and monocyte count. Although some of those are always going to be too high or too low due to things like constant infections and so on. A lot can be fixed by fixing the anemia, thankfully. All my vitamins and so on are perfect though! And my HBAC1 is 45. Diabetic diagnosis needs a result of 47 or higher, so I've been told to try and cut down on sugar, but carry on plowing away the calories, as I managed to gain 0.8kg in three weeks, woo! I think the threat of the feeding tube definitely shook me to my core at the previous appointment.
The (extra) annoying thing about the resulting anaemia, is that there's a research trial in Edinburgh and London going on at the moment. It's not Kalydeco, it's a nebuliser which is to do with seeing if they can completely halt (or possibly even reverse some, I can't remember) lung damage in CF patients. It involved once a month trips to Edinburgh to recive one dose of the drug via a neb every time, and they'd refund your travel etc. It seemed good so I said I was interested and was sent loads of info on it, especially as I was the perfect candidate with lung function between 50 and 80% (not too low as there may be a slight drop, and not too high to not notice any improvement) and with no recent sudden changes in my general treatment. My anemia means I can't participate though, which is shit. However, my doctor said there's Kalydeco and Ivorcraftor (?) trails going on for DDF508 in the summer (can't remember if he said this or next years summer) so he's going to try and get my haemoglobin results (along with everything else) back up to normal in time so I can do that one, woo!
Finally, if you've ever wondered what I look like in an age 13 leopard onesie, wonder no more!
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