Sunday, 17 September 2017

One of those things

Hemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with shit lungs. I won't pretend to be an expert on the subject, I hardly am. What I am, is a massive wuss.

Those people who go 'Oh you're so brave!' when they hear of things you go through with CF, or claim 'I could never cope with that', the thing is, when a procedure, or illness, or treatment is presented to you, it's often not a choice. You don't get to go 'Actually, I'd rather not'.

This brings me back to hemos. Coughing up blood is petrifying. It never used to happen to me much. Maybe once every couple of years. Before this year I'd hedge a good bet it had probably happened only enough times to count on one hand, a couple of those occurrences being pure blood, more often, just bloody streaked sputum (lush, yes). Every single time, it only happened once. Then June happened.

We've already gone through this in the previous post, so I wont repeat myself (I'm trying to break a habit of a lifetime!) but that was the first time hemos had repeatedly continued, and it did for 42 hours, almost like my lungs (or my vessels?) were trying to prove a point. I had the embolisation the following month as it was simply too much blood and too prolonged to leave (I've since seen my CT scan and the responsible vessel was fairly big, as was what looked like a pool of blood around it!). That went off without a hitch and i got my wish to be knocked out. It was quite a hectic week beforehand, as I had an anaesthetist appointment so they could get all the tests and pre op info from me, as well as needing to start IVs as soon as the anaesthetist agreed on a date and also revising for my last exam of my bookkeeping course - which I ended up taking the morning of my embo.

I limped for 2 weeks after and my leg was sore at times, but its amazing to think they could go through a vein (in your crotch, another reason why I was glad I was asleep!) and find the vessel, and sort of glue it shut.

I was fine immediately after, even with the anaesthetic. It made me a bit slow and drowsy for an hour or two after, but once I'd had a drink and even enjoyed a hospital sandwich, I was fine. Its strange as my tutor insisted I had the exam before my op, saying I couldn't have it a few days after due to anaesthetic staying in your system for a week.

On Tuesday night this week, I was reading facebook and read someone's post in a CF group about hemos. It reminded me of my own, and I hate thinking about it. Honestly it seems fairly surreal, to go from coughing up not exactly small amounts of bright red blood, to going back to your normal life. I coughed, and panicked. I felt a familiar gurgle. I had a tiny hemo - not even enough to shout about, but it was watered down blood. The fact that its the first time since the big one though, made me nearly shit myself in fear, I don't want to go through that again.

Thankfully I have tranexamic acid in the house now, and obviously know all the cold water, no physio or nebs tips too. John had to calm me down though, as I couldn't stop shaking. I woke up every hour, worrying. I also emailed my dr in the middle of the night who replied at 8am to say the usual 'keep calm, take the tranexamic acid and if it happens again, come straight in'.

It hasn't happened since *bangs every piece of wood in the house* but its so horrible. It never used to even phase me. I knew it was something that could happen, but never really thought it would get worse than a one off. Although last year, two friends died from major hemos, and when I have one, now thats all I can think of, even though I have a handful of friends who have frequent hemos, and are all fine, despite it being a pain in the arse. Personally I'd rather be in the club of 'It happened once, I had the embo, and I've had one again'.

Like I said, it never used to happen much, then this year its been maybe 4 or 5 times, all only once (obviously excepting June). We don't know why I've had more frequent hemos this year, but i have been on a medical trial since Dec, and the patient information said to mention it to your study nurse if you were to ever cough up blood. Now I don't think it would say that if it wasn't a possible side effect? My dr isn't sure either way, but I've since come off the trial, as he doesn't think it's helped me overall. I was only 8 weeks from finishing anyway so it doesn't make a massive amount of difference. I also have suspected gallstones (this is possibly what caused me a lot of pain last year, resulting in suspected bad reflux, taking gaviscon and proceeding down an avenue of hell for 6 weeks) and I have a CT scan on Tuesday to see if they've grown, as I've had pain since mid august in my stomach. No one in clinic could think of what it is based on my description, until my dr pulled up last years ultrasound that showed tiny gallstones. So the CT is to see if they've grown.

Saturday, 24 June 2017

My annual ridiculous hospital adventure

I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this time too! This is a long one, but it felt 100x longer living through it!

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...

Self explanatory!

Friday, 26 May 2017

Clumsy adventures

You'd think most of us with CF would have already had our fair share of hospitals, and would generally avoid the place like the plague outside of check ups or admissions.

I wish i could say the same! I'm very clumsy but this one was so drawn out.

I damaged my shoulder some time back in November. I'm fairly sure it was when i went rock climbing/bouldering, and possibly added onto going to the gym the next day. Either way, what followed was a ridiculous 6 months of pain, which has thankfully been resolved. But I don't blog enough so I'm telling the story anyway!

After a couple of months of pain, I went to the GP, to be told it hadn't been long enough for them to do anything - it was suspected that i had a torn rotator cuff due to the fact my arm hurt if i raised it above my shoulder level. I'd also asked my physio at hospital (although past experience has told me not to bother, they're mostly just chest physios, and therefore haven't treated anything else for a long time and their knowledge can be out dated or remembered incorrectly) but she just gave me an exercise that put me in mind of the 'stroke the furry wall' segment in "Get him to the Greek".
This gradually healed slowly. I was still going to the gym but avoiding too much shoulder stuff. In hindsight i do wonder if carrying on at the gym wasn't a good idea, but I didn't want to stop going entirely. It can be difficult to get into a grove with going to the gym and keeping it up, but SO easy to just sack it all off and stop going. While they also bleed you dry via your bank account.

Fast forward to about 2 months ago, I woke up to insane pain in my shoulder. I thought this was possibly due to the fact that I'd woken up sleeping on my side - something my physio had said was inadvisable in terms of healing, along with anything else that would bare weight on my shoulders, but apparently my subconscious doesn't listen, so there wasn't much i could do if I rolled over in my sleep. This had happened a few times and usually the pain would go away after a few hours. This time, it got worse. I had about an inch movement in my shoulder before i was in pain, enough that it wasn't bearable. It got to the point where even lifting my arms slightly to type on the laptop really hurt! I made a GP appointment (somehow finding one available in 3 days, even though a 2 week wait is normal for my GP) and waited.

I went to the gp (annoyingly, she was kind of in a rush even though the waiting room was empty and it was evening) and she agreed it was a torn rotator cuff and I could benefit from a steroid injection. This is where it gets silly though - even though my name on the screen comes with a side note that I'm deaf and I lipread, this gp was talking very quietly, turning away and such. She rang someone, and told me to 'go over there, I hope it helps' and ushered me out the door. I didn't know where 'there' was - was I meant to make another appointment? Was I meant to go somewhere in the local hospital attached to the gp surgery? The receptionist didn't know where I was sent to and I wondered if another appointment was what she meant? Ah, no appointments for 14 days. Really? i can't move my arm! A bit of digging and appointment was found... in 13 days. Helpful. A bit of casual chat about her cochlea implant (as you do) and she suggested that i go to urgent care - my local a&e that was downgraded in favour of a super hospital (best hope i don't have any time sensitive emergencies as said super hospital is 45 minutes away!)

So I went to urgent care to ask if they give steroid injections for ruined shoulders. There was a lot of back of forth, a student nurse who looked like she wanted to cry when given my list of medications to copy down, and a doctor with an accent that i couldn't understand very well. This is why i dont go on my own to places! I have no idea what i agree to half the time. I had an xray and was plonked in a sling. And an appointment made for Trauma clinic at the hospital the next day.

So trauma clinic i went! With my mum in tow so i didn't end up agreeing to an arm amputation which at this point was feeling more logical as my arm was so useless. And i like to be dramatic. This resulted in being told that having my arm in a sling was the worst idea - it would just make my arm stiff and more sore in the long run. They wanted an MRI which i think is normal for this sort of injury, but upon seeing my port in the corner of the xray, the doctor rang the MRI people who wouldn't touch me with a barge pole. Its titanium! i told them this, and that its fine in an MRI but they were having none of it. So I had to wait for an appointment to come through for an ultrasound. It did... made for 2 months after I'd originally gone to trauma clinic.

I also got a slight snort out of the xray summary mentioning my lung scarring visible in the top corner, and that it was worth looking into.

I then found out in between trauma and the ultrasound appointment, the GP had told me to go across the hall to another GP who specialises in muscles and bones etc. He most likely would have given me the injection there and then. Typical.

The appointment came around and was last Friday. It was for an ultrasound to see if they could see anything, and a possible injection, which i did need. It hurt! Both my mum and John's mum have had this done before and they told me it didn't hurt - they both admitted it was cause they didn't want to get me wound up before i even got there! Ironically, they couldn't see anything on the scan, not a torn rotator cuff or something burtitis which is what mr Trauma thought, due to my age, and nothing else (he chose to ignore my 8 years on steroids, even though they both thin your bones and can basically eat away your muscle). Even though they couldn't see anything, we agreed the injection was worth a punt as I was fairly limited and 6 months of pain is just getting silly. They said it may not work... thankfully it has! My arm stiffened and hurt like hell again for 2 or 3 days (as normal) then healed wonderfully. But I dont fancy another needle into a shoulder muscle anytime soon. Even with local anaesthetic and crushing John's hand, it really hurt!

Baring in mind, all of this was seriously irritating when you account for the fact I'm only 5'1, and need to reach for a lot of stuff!

Saturday, 21 January 2017

Disability equality isn't always equal

This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences but I'm a mere drop in the ocean of those who basically get kicked in the teeth, even from services that are actually meant to help.

Case in point, my most recent experience which was the cause to write this post.

The parking on my street is a nightmare. It's so hit and miss, and no one cares. I've lived here for a year and a half and maybe half the time, I get parked on my own side of the street, and if I'm lucky (or it's well timed) I can park outside my own door. All the other times, I'm parked anywhere from on the other side of the road, to round the corner and down the hill. A lot of this is due to the fact my neighbours managed to all miss the parking portion of their driving lessons and forget any parking etiquette; they'll usually park as close to outside their own door as possible, ignoring where the other cars are parked. They sometimes block me in too. I should point out theres no markings on this road, which is probably one of the main causes for the shitty parking. But this bad parking means that people will often take up two spaces. And this isn't just a bad assumption of where others may park, they directly ignore where the cars are, refuse to line up and park bang slap in the middle of where two cars would comfortably fit. They're like those dickheads who park over two spaces in supermarkets cos they don't want their car dinged.

It might not seem much to you, but to me, when I'm tired, when I've been to the gym (which is considered essential exercise and physio, before you launch on me) or if there's anything in the car that needs bringing in, its a nightmare. It's just as bad if I'm leaving the house to go to the car. Especially in winter or any cold weather. If I'm going from a warm house to a freezing cold outside, it makes me cough so much I often can't start driving for several minutes. This obviously gets a lot worse when its added with trampling up and down hills to get to the car. I've sometimes actually been parked closer to John's parents house than my own, and they live a 5 minute walk away. I've often left my disabled badge on the dash to hopefully demo that I need the space, I figured it was easier than knocking on everyones door like some sort of Jehovahs Witness, and giving then a lengthy explanation on why I need to park there.

So I decided to apply for a disabled space marker. These aren't enforced; they're more like a polite request to say I need this space more than you. But I figured it was my best chance of actually being able to park near the door. This process takes 3 months and the form is fairly pathetic. They don't ask for any reasoning why parking is difficult or even ask to show proof of your blue badge (they do when you're approved, but I imagine asking to see it first may avoid any people trying to chance it?)

The process involves having someone from the council evaluate the road and see if you're too close to a junction or roundabout (this means an automatic no if its not safe, the road also has to be wide enough. These last two points meant I was refused a space outside the flat we previously had). If these are approved, then they will ask your neighbours permission. I am not kidding. They actually ask people who don't know whats wrong with you if they mind having a disabled space painted on the road.

I'm not sure how many it takes, maybe its a majority vote, maybe it only takes one person, but I was refused my space. All I was told that one of the consultees objected to it. I don't even know if they were told who was applying for it, because if so, surely that would sway their decision if they had a personal dislike for that person? I get on with my neighbours, that I'm aware of. While I hate their parking tactics, I've never banged on their door and told them to move. I've argued with someone on another street who had bonfires monthly to burn garden waste, which resulted in reporting him to the council as I couldn't leave the house when he did this. Luckily he hasn't had any fires since. I say lucky, I mean for him, as he could be fined up to 5 grand. Another neighbour asked me to stop coughing so loudly, and stared at me with a blank face before continuing to tell me, but the coughing is very loud and our houses are terraced, when I told him I had a lung condition so it couldn't be helped.

I have emailed the lady who I'd previously emailed asking for an eta on the result of the application, asking if the result can be appealed. I also gave some points to why parking is so difficult and how my neighbours have so little disregard, including someone 2 doors down asking me to move my car so a van could park outside this morning. I said yes before I thought - I can be far too polite on the spot would you believe! - but afterwards I thought of how I should have said no, and told him to move his small van and his wife's massive estate car, for once.

(I'm currently parked across the road and on another street. Go figure).

Obviously when this letter came through my letter box, I vented my frustration on social media. No one else seems to understand why the neighbours get the final say, and I think thats a very logical reaction. Why am I made to park further and further from my home because someone thought it would get in the way of them having a space? Why do people who don't know my health problems get to decide if I'm able to park close to the door or not?

It's not just parking that's hard. People stare at you for having a badge if you don't have some sort of obvious physical defect or aid, they glare at you for coughing, they argue at you for sitting somewhere they were about to sit, even though your back is hurting so much you're in tears and literally couldn't move any longer. They get annoyed at you for being deaf, they make things difficult when you mishear them, they think you're rude or being annoying when you ask them to speak clearer.

You get denied benefits because you 'look healthy', and without knowing your medical history, declare you fit to work, and you get denied a space on the bus because moving a buggy for your wheelchair is too inconvenient, or if you don't openly look disabled, they think you're just lazy (same goes if you don't get up out of a disabled persons seat for another).

In the past, I've been in a wheelchair and people speak over me, to the person with me, to ask a question I could answer. They grumble or stare in disbelief when I get out of the wheelchair. When people have found out I'm deaf, they stop speaking to me and speak to whomever is with me, and if they don't know I'm deaf but speak in a way I can't hear them (turned away, mumbling etc) they assume I'm rude. I've been spat at for parking in a disabled space and, yelled at while someone demanded to know if I'm actually disabled while they stared at my legs. I've also been told to move out of spaces for another person with a badge.

I'm so fed up. I'm this close to knocking on all the doors and asking. I have a suspicion on who could have said no, some are so lovely and they're literally the perfect neighbour.

However, people surprise you.


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Tuesday, 22 November 2016

Bye bye pred

I can finally wave goodbye to the little bugger that is prednisolone!

I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.

Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a collapsed lung - they need to rule that out to be sure.

I've wanted off pred for ages, although I think its a mixture of hating the evil tablets that leave the most disgusting taste in your mouth if you're not quick enough when you're swallowing them, and also because I don't think they're doing what they should anymore. Pred has horrible side effects, and although its hardly a bad thing that I don't get them anymore, I also don't feel the benefits (I'm so used to side effects off various stuff that when the side effects stop, I can tell the medication has stopped being useful too). The side effects ranged from various stuff like moon face (thankfully I only ever had that when I was on 20/40mg alternate days for over a year), fluid retention, insomnia, constant hunger, mood swings (cheeky shites may comment that there is no difference...), poor bone density, bruising all the time, I could go on! I've also read that it breaks muscle down, and makes all your fat deposits go to areas like your tummy, it basically does the total opposite of what dodgy gym steroids do. Whenever someone would hear I'm on steroids they'd make a hulk like joke - sadly its useless! I think I've definitley noticed that, as I think its a factor in my slower than I'd like improvement in the gym. I can be stuck on the same level for months noticing no improvement on ease or stamina, and I'm sure that's because I'm trying to gain muscle on top of a medication that wants the opposite.

So I'm stable *knocks on every piece of wood in a 3 mile distance* which means my Dr thinks its perfectly fine for me to come off it, as the original need for it has cleared up and its not really needed for anything else. Plus it'll probably be better for my bones as my last bone scan came out as -1, and for someone who trips and walks into things on a daily basis, thin bones are not on my wish list.

It took a couple of weeks of taking 5mg and 10mg per day (which evened out as 7.5mg) then 5mg every day for two weeks, before I had a test done to check my cortisone levels. That involved a blood test, an injection of synacthen, another blood test 30 mins after that, then another, an hour after the injection. Thankfully my nurse brought me a proper cup of tea, as the test had to be done first thing in the morning, before I'd taken my steroids. I woke up so early I didn't even bother eating breakfast as the earlier I wake up, the more I cough, and just feel sick instead of wanting my usual bowl of coco pops.

The test came back fine (obviously) which meant I was actually fine to stop the 5mg a day completely after getting those results! I'm still on steroid inhalers, but I need to stay on those as they help with daily things.

It's been a very long 7 and a half years or so, but I'm finally freeeee! Out of all my meds, I really hated pred the most, and that seems to be echoed in a lot of other people's views too! However, I'm not adverse to a 5day course of 30mg if it helps whatever the problem is.



Friday, 21 October 2016

Orlando!

A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so long made it so worth it! And we spent every penny we took, which was the intention, I just didn't realise how much stuff would cost over there! Most of it went on food, and a few little souvenirs, but savings are made to be spent on something memorable so we don't regret a thing! This will be a pretty long post though...

Whilst the holiday itself was amazing, the journey there left something to be desired; After waking up at 3am for a 6am flight, it was delayed by a couple of hours, and once we did finally get on, it didn't leave for another hour and a half. This meant our other 2 flights had to be rearranged as we'd missed them. They sorted this, with a few bumps, and we basically ended up on the same route, just 3 hours behind.

Our last flight (JFK to orlando), or rather just JFK the airport, was a fucking shambles. When you require special assistance, even if that's just the lend of a wheelchair cos you can't walk the ridiculous distances, they basically push it for you, even if your other half is totally capable. Apparently we needed a taxi to take us to the other terminal as the airport was fucking huge. We waited 30 mins, for the taxi to get here (with a member of staff telling the other 2 couples that John and I were the first to get on as our plane left first), for everyone else to bundle in, the back two seats not be able to fold up into seats, and for the taxi to leave without us. The staff member then pointed us to the air bus... right across the street, and that would take us to the terminal (which it did, in 2 fucking minutes!) She took the wheelchair off us too though. We had to then stand for about 20 minutes through security (as i had no fucking wheelchair!) with unsympathetic staff who didn't care that our flight left 15 minutes. We managed to get into a slightly shorter line, only for some actual shockingly super obese lady, her daughter, and her accompanying special assistance staff member, to shove in front of us, and take decades of time to get her stuff through the scanner. John had pretty much given up any idea of making the last flight, and I walked ahead, out of breath, shins and back hurting from the walking, to get to the gate, which was typically, the furthest away, and once I was there, I may or may not have promptly burst into exhausted, frustrated tears when she said they hadn't shut it yet so we could still get on (they closed it right after we did, though!). That flight was a couple of hours long, we got our transfer (which took over an hour as the driver decided to drop off everyone else first, when our hotel was 20 mins from the airport), and got to the hotel, to be greeted with a massive rush of boiling humid air at 11pm.

Once checked in and in our hotel room, I shoved my Dnase into the fridge. It's meant to not be in room temp for more than 24 hours and it had been out for 25 due to the delays. I think it still worked well, my chest was a bit more chunky through the week but that may have been the humidity or something.

After all that wonderful excitement, we started our holiday properly! We had one empty day during the whole time, and in hindsight, it would have been smarter to have set that free day for the first day to sort out the jetlag, and the fact that i felt dizzy from the planes, hungry (and sick from hunger) from having eaten 2 meals since 3am uk time the previous day (getting to the hotel at about 4am uk time the next day), having had about 6 hours sleep in about 48 hours or so, and possibly having taken the wrong creon amount during one of those two meals as i felt bloated and sick, which is how i feel when i don't take enough. Regardless, we started our two days at universal, and they were amazing! We had 2 day, 2 park tickets, with a quick queue ticket which came in part with staying at the on site hotels, and a special Gold pass, from the charity who gave us the park tickets, which allowed us to skip the queues in places where the quick queue didn't work (mainly meant going the long way to the rides which was useful as the wheelchair we had to hire due to the distance I'd have had to walk, as well as the heat, wouldn't always fit round the queue lines very well).

John went on everything, and i went on anything that didn't give me horrible vertigo (due to my whacked out balance and hearing problems, on top of the fact i already felt sick). I went on one 4D ride and nearly threw up, which was saying something as they're the ones where your chair just moves about while you watch a 3d film. I had to skip most roller coasters (i went on a couple, and quickly found out that barrel rolls and loops do nothing for the vertigo) but i did go on a few mini roller coasters and some that were kind of 4D but not as bad, like gringrotts, spiderman, transformers etc (they were pretty good fun but i'm also a wuss meaning if i didn't have vertigo i wouldn't have been able to go on the huge roller coasters like Rip Ride Rocket and the Hulk anyway)

We had a list of rides we'd made from looking on the website, which basically skipped the kiddy rides, and I'm really pleased we did everything we aimed to. The quick queue certainly helped though as some rides had really long queues. On rides where we weren't sure if they spun or rolled, john would go on first, and tell me what it was like so i could decide. We also went on the water rides, and because it was about 30+*C, we dried out quick too!

After those two days, we went to Busch Gardens, Sea World, the Kennedy Space Centre, and Aquatica. I don't have many photos at all, a combo of mostly being on rides (or waiting for john to finish his ride) and having a shit camera. I couldn't take my Nikon D3 due to the weight and its value, so borrowed an old bridge camera, which was blurry, terrible low light, out of focus a fair few times and took 3 seconds to take a photo (meaning i missed a few things i had a second to capture). About 2 thirds of the photos i took were blurry or hard to see due to the bad lighting. A bit annoying when i realised my dad was genuine when he asked if i wanted to take his canon IXUS which takes amazing photos, and its a pocket sized camera too.

There were a lot of roller coasters in busch gardens and sea world, and john went on most unless they were shut. I went on this insane green roller coaster in busch gardens which was the kind which speeds up as it goes upwards, and I tolerated that one fine considering there was one barrel roll. I'm glad i at least went on a couple as i used to love roller coasters but now they scare the living daylights out of me. I'm scared of heights so any vertical drops have me bricking it just looking at them. There was one insane looking coaster at either sea world or busch gardens, and i was going to go on it until i saw it had a vertical drop, and got myself in such a panic i just sat and watched in horror as john got on and came off a few minutes later grinning like mad.

We also decided to go to Halloween horror. It cost a lot but it was so worth it. We managed to get another gold pass (which are impossible to get unless you have someone helping) as ours was only good for the two days we were at the park originally, and i think the only reason they gave us it was because we already had one. John over heard three people come in and ask for one while we were at the desk, and they were all turned away. The quick queue for HHN was about $80 per person, per night, and the hotel one didn't count for it. The queues for the horror houses were up to 2 hrs long and there was no way I'd have managed that. We still had the wheelchair but even sitting in it gets uncomfortable, and there was various people smoking all over, as they apparently seemed to think that if it was dark, you didn't have to go in the smoking areas.

We went to halloween horror three times (its only open certain nights but our ticket was valid for about 21 dates - its expensive but if you're around for that long its pretty damn good value) and there were also several rides open during it, but with much shorter queues. I think John went on the Rip Ride Rockit rollercoaster about 5 or 6 times, and we went on the mummy and the gringrotts ride several times too.

On our last day, we'd been to Aquatica, but weren't there all day due to the fact that neither of us liked the slides where you didn't have a ring - you felt each join in the tube with your spine and fuck me that hurt something rotten! There was also a thunderstorm coming which meant lots of things had to shut. The same thing happened the previous two days, and the rollercoasters, and various other stuff, will stop if the thunder and lightening is less than 5 or 10 miles away. A lot of the time a massive rainstorm followed which meant most people weren't exactly about to go on a coaster anyway.

That evening we went for a meal at hard rock cafe. It was pretty pricey but worth it for our last night. We decided to walk back to the hotel rather than take the boat that went back and forth every 10-15 mins, and I simply thought John suggested it cos he didn't fancy waiting. There was a tiny beach on the walk back next to the pool (although that was shut as it was 10pm) and john suggested we stop and sit on the loungers. Again, i thought he was just making sure i wasn't getting too worn out. I was sitting in front of him, admiring the view, and he pulled out a ring and put it in my hand!

I may have not put two and two together (something in me didn't want to presume as we've always said we'd want to get married but i wasn't expecting anything just yet!) so I turned around and John asked me to marry him :)


It turned out that when we went to my parents the night before we left (at his suggestion but i thought that was a simple popping over to say hello before we go on holiday kind of thing) he asked my dad for permission which i think is very sweet - of course my dad didn't mind at all as my parents love john and get on with him brilliantly. He told my mam after we'd left, and other than them, the only other people to know were johns parents.

We've been together 5 years and lived together for over 2 and a half, so people have been asking and asking when he would propose. I'm glad he waited till he wanted to and didn't feel pressure, and now people can finally stop bugging us (but the 'when will the wedding be' questions have only just started!)

We came home on a bit of a high the next day, with no problems thankfully, although it was weird at first settling back into regular life, and yes, I've already started gathering wedding plans! We don't want to be a 'get engaged and just stay engaged forever' couple as everyone loves a good wedding. Just kind of hoping for a small windfall to pay for it ;)

Health wise, I'm quite well! I went 4 months between my last ivs before needing them in prep for holiday, and I'm about 6 or 7 weeks out of those and coughing a bit, but i think its the sudden temp change as england seems to think its migrating up towards the north pole.

More photos if you made it this far! Sorry it was so long!





















Saturday, 3 September 2016

Holiday excitement

So i turned 25! I feel so old considering I still regularly pass for 15. I know, I always get the 'you'll be grateful when you're older' comments too but they do get boring after a while. Sort of like the 'wow you must rattle' comments when people hear how many tablets you take a day.

Speaking of tablets, I'm 4 days away from finishing my holiday prep IVs and I've started packing up for holiday (10 days!!!) and even though I don't take a serious amount of stuff (I think I'm probably mid way, i do take plenty but i don't take as much as some of my other CF friends) my suitcase appears to be 3/4 full of meds. I'm only taking a cabin bag and an extra carry on, I get far too worried about putting things in the hold. But what really got me is that when I asked someone on british airways twitter account about possibly having an extra carry on just for meds - and what i got in reply was "oh don't worry, we have quite the generous carry on allowances"- even AFTER she asked me to list everything I'm taking! Which, if you were wondering, goes as follows:

9 x dnase
9 x saline for neb
eflow (with plug and batteries)
eflow mouthpiece
tobi pod
9x days of orkambi (36 tabs)
3 x pots of creon (I'm so glad i only take around 5-7 for a meal!)
antisickness (taking 9, enough for one a day, as they also help with some reflux)
salt tablets (at least 3 a day, maybe more)
symbicort inhaler
ventolin inhaler
Spirivia inhaler
9 x calogen shots
fluxclox (72 caps. I know, its loads. Blame my doctor)
omeprazole (18 caps)
urso (18 caps)
Vit A+D (18 caps)
Vit E (9 caps)
Vit D3 (1)
pred (18 tabs)
Azithromycin (4 tabs)

overall: thats 510 or so tablets, 18 neb doses, 9 supplement drinks, a nebuliser with the essential bits and 4 inhalers. For 9 days.

I'm pretty sure thats all. Oh and by the way I'm also meant to be able to fit everything else! Like toiletries, clothes, my camera, phone charger, sunglasses, all the documents etc. The bright side is that coming back I'll have loads of space! I'm taking everything in the original boxes as that should be easiest, along with a letter from my cons. I'll be putting everything in the dossett box when I'm there, but don't want to travel with them in the box already as a, if it opens then thats just too upsetting to even consider - its bad enough when you spend ages decanting it all, and knock it over on a table in the process of shutting the lid. Also, some airports may not be too happy about it - considering I'll be going through 5 overall (including arrival) just on the way there, 3 of which are in america.

I promise to put up a long picture-esque post when we're back. I'm hoping to get at least one good one of me and john as that was all the charities asked for in return (you know, the CF charities that give you money specifically for your holiday)

I really hope the pictures turn out okay too - I wont be taking my fancy pants DSLR as it weighs a tonne and is also very expensive. We do have insurance that covers that but its just too risky for us. So Im taking an unused bridge camera from John's mum, which I've tried a few times and its okay, just so odd not being able to control as much as you can on the D90!

Hope everyone's had a lovely summer! I actually got a bit of a shock to realise kids were going back to school next week!

One of those things

Hemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with sh...