Early christmas present

I had clinic on Friday, and it turned out to be one of the best clinics I've had in a while, so sort of like a really nice early Christmas present. My Lung function was the best it's been in several appointments (not sure what the percentages were yet as I always just read them off my copy of the letter which is sent to my GP) but I vaguely remember the amounts, and I think the first was about 1.90ish and the second was just over 2litres, for me I think that's nearly 70%, and considering the fact I haven't felt great (despite finishing IVs 3 weeks ago, I'm blaming the weather) seeing my lung function be so impressive has seriously boosted my confidence in knowing I can get it up and keep it there, as it's been hovering in the 50s-60s for a while now. Not that those numbers aren't still pretty damn good, but I do prefer the higher numbers :D

I wasn't expecting this as I'd been feeling crappy, exhausted, random breathing attack things that would leave me gasping for breath for no reason (which confused my physio and dr nicely) and coughing all night, therefore getting minimal sleep. I'll admit my exercise attempts do falter in the winter, as I like to go on walks around where I live, and that just isn't happening in these temperatures. Wind, rain, fog, snow, none of it could end well for little me!

The rest of the appointment was great too, my weight was stable (ish, I did loose 0.2kg but I put that down to already being starving again just after lunch, despite managing breakfast, lunch, two cups of tea, a packet of cashew nuts and a fortijuice all within the 4 hours I was awake before heading to clinic) my sats were a nice and lovely 98% too, and then there's the extra things that happened:

I'm getting to trial the Tobi Pod inhaler at my next appointment - you have to do lung function before and after to make sure it doesn't affect you too much; if you drop more than 10% (i think?) after trying it, you're not allowed to use it, but if its less than that, you can keep it, and therefore drop the horrendous tobi nebs. WIN! I HATE the taste of those nebs, and even though Ive heard the inhaler doesn't taste much better, it's done in seconds so that beats sitting with the eflow for a good 10-20 mins inhaling the awful taste. Also a bonus of halving the amount of neb cleaning I need to do and also the obvious cutting down time, which is handy if you're in a hurry to leave somewhere and forgotten to do all of your nebs. So basically, I'm sooooo hoping I can use this. The idea that I'd have to continue using the foul stuff whilst everyone else gets a short cut would really nark me off!! Now they just have to get the colomycin one finished so I can completely remove antibiotics from my neb regime!

I'm possibly changing my steroid inhaler (I can't remember the name, ever, just that its orange and round) to something stronger, and hopefully this might stop these weird out of breath whilst doing nothing moments. They're slightly scary as I don't know whats caused them and I don't know how to slow my breathing down (as I can't seem to take a deep breath in when it happens) or calm myself down to just get back to normal til it just happens itself. Maybe I'm just odd.

And thirdly, I'm trialing DNASE the appointment after I've tried the tobi inhaler, as hypertonic saline might not just be getting the job entirely done anymore. I can't remember if the physio said I'd do both or just one of them (deep joy at the idea of adding MORE to my neb routine, I don't need to do much at the moment (two nebs twice a day) but it doesn't mean I fancy more of it) but hopefully it shifts the rubbish in my chest! I need something new to work as needing IVs every couple of months (or even sooner sometimes) is just getting so stupid.

My dietitian would, as always, be happier if my weight increased, but is still determined to get to the bottom of my random high blood sugars. And definitely wants me on some sort of insulin. So a blood test was sent off to check the HABc1 or whatever it is, as that's what originally sent alarm bells ringing, when the number was at 50 at my annual review, and she doesn't want it higher than 42. The idea still annoys me, but it does have its advantages - controlled sugars would hopefully benefit my chest and also help my weight.

Finally, if you think of anyone over the holidays, please think of Kerry. She's only 21, now at 8% lung function and struggling every minute. All she wants for christmas is to be here, spend time with her family, fiance and gorgeous doggies, and get that call for lungs which she so desperatly needs. If you haven't signed on the donor register, PLEASE do it now. It takes two minutes, and you could save the lives of up to eight people. No one likes to think of death, but surely knowing that you could save the lives of so many people, and prevent more families experiencing the horrendous grief of loosing a loved one, that should make it a damn good reason to sign up.

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

Reflux ridiculousness

I've been having some proper problems with reflux in the last few months. Basically, it started in August or so and my tongue was really, really painful. It hurt to eat as it felt like my tongue was burning. Sort of like when you eat loads of fizzy sweets and then your tongue hurts for the rest of the day. Try having that every day for a few months. Anything with a slight texture or flavour would absolutely destroy my tongue so I probably wasn't even eating enough when it was at its worst.

The incredibly annoying irony of this, is that previously I've never had reflux issues in the slightest. I've been happily taking Omeprazole for years at a basic 10mg a day. When my tongue was still hurting, and a clinic appointment came around, I brought it up to my dr and he suspected reflux. More specifically, that reflux had been burning my tongue, so my tongue was essentially a sensitive burn which would explain the pain when trying to eat say.... anything. He changed the dosage to 20mg a day (I say he did, but I actually had to go to the GP and have it changed, which caused a lot of idiotic issues as I'd managed to book an appointment with a locum who didn't know how to use the computer system. Smart.) and changing the dosage helped a lot. The pain halved quite quickly and with any luck, it would go away completely.

But noooooo, unfortunately the same thing started to happen, so my dr (ahem, GP) changed the dosage to 40mg a day, so its 20mg in the morning and 20mg at night. This seems to do the trick, and if it starts to happen again, I will loose my temper incredibly and cause the most unbelievable shit storm, you would not believe.

Now back to the irony of all this.

A few months before all this started to happen, I'd agreed to do a reflux study with some peppy little dr who'd persuaded my dr to ask all his clinic patients if they'd like to take part. Completely optional of course, but I thought it sounded like a good deal as he'd get his research and the info could also be used to make sure I'm on the correct amount of reflux medication. The reflux bloke had pointed out how reflux can cause infections and so on, and considering how I only go a few weeks or a couple of months off IVs before needing them again, and also have a fairly colourful amount of scarring on my xray, I was interested.

By the by, I'm fairly sure I cocked this up in the first place, as I was asked to stop taking my reflux meds for a month, and for some reason, accidentally stopped taking my Ursodeoxycolic acid for a month instead. Although I'm positive that's what I was told to stop taking and was incredibly confused anyway. Oh well!

Once the day came to go to the reflux dept and have a charming little tube stuck up my nose and down my throat to monitor my reflux for 24 hours, I started to get a little jumpy. I've had 3 NGs previously, all placed within the space of a week when I was 11 (right before getting my PEG). The first one was pretty bad as they'd managed to convince themselves that an adult size NG was a suitable size for my little 11yr old frame, and spent the following days (before I threw it up, ha!) unable to sit up or eat solid food as it was so uncomfortable. Thankfully the other two were paed sized and never bothered me up until my PEG placement.

The little dr assured me that the reflux tube would not even be half as bad as an NG, and waved this tiny, nearly threadlike thin piece of tubing in front of me to show me how small it was. So, begs the question, how did that tiny piece of tubing become more traumatic for a 20yr old than 3 NG placements when I was 11?

HE LIED!

Yep, the bastard actually lied through his teeth. Once I'd finally given him the go ahead, he swiftly dropped the tiny tubing and picked up this huge tube that was closer to resembling a small suction tube, and rammed that up my nose. Not to mention that I'd had a nose bleed the previous night due to being on Ceft IVs and coughing like a maniac. Him ramming this tube up my nose with such force hurt so much I pushed him away and told him to back off and that he wasn't coming near me again. I felt like I'd been punched in the nose. He then profusely apologised, and said how he needed to put that tube down first (for something that I've forgotten, but it wasn't very justified to not bloody mention it in the first place) before he placed the smaller one. Suffice to say, he didn't come near me again and I left the department in a very bad mood, with my hand still over my nose in pain.

So yes I find it quite ironic that I'd never had reflux issues in the past before getting this problem quite badly, and also that I was offered a 24 hour reflux monitor and they fucked up to the point of not even managing to go through with it. But as I said, I'm hoping the 40mg a day will work nicely, as its actually taking the piss when you can't finish a small cheese burger from mcdonalds because the tomato sauce is making it too painful to take another bite.

Catching my breath

Or at least attempting to.

I don't know if it's cause of the weather or cos my shit excuse for lungs start having a tantrum two weeks after finishing IVs because they're blatant IV drug addicts.

Basically, the crack is that I keep getting out of breath. Doing nothing. It'd be understandable if it was after walking for ages or after a huge coughing fit etc (Which happens anyway) but my god, this is really pissing me off. I can just be sitting watching tv and all of a sudden I'm out of breath and can't slow down my breathing or take a deep breath at all. It's so bloody annoying as I was hoping these IVs would have lasted me till at least christmas. I'm already coughing all night and waking everyone up again, and there's nothing I can do about it. I've got a clinic appointment on the 21st so I don't know what they'll say then. I don't want IVs over xmas, and I can't take Cipro as it doesn't seem to do much, and also destroys my appetite so I literally don't eat the equivalent of one meal a day cos it's that bad. I'm on tobi nebs this month so I'm hoping that might help some. Not that I actually notice any difference when doing my nebs, but I'd rather not notice a difference rather than not do them and potentially feel worse.

It's still fucking stupid.

I'm obviously in a right grump about this but I think it's justifiable to be pissed off about feeling shite when you've literally just finished IVs.

Blah nothing else to say except to bitch about my lungs. I'm sure if I could get out and do more walking it would help, but its minus degrees outside, icy, and even wearing a massive hoody, coat, gloves and the like still don't fend off the freezing temps. So I'd rather not add either a chest infection or a cold to the joy that's happening so far.

Hopefully this will go away on its own (and cos of nebs, physio and whining about it daily) and if I don't get off my arse to post again before xmas, hope everyone has a good holiday spending time with their friends/family/various cats

x