If anyone was watching the 3 part series that was on ITV 1 the past few weeks, they'd have seen the last episode which was aired last Thursday, and it had a 13yr old boy with CF in the episode. It was filmed in the RVI, the hospital where I'm treated, and the CF doctor who appeared for a couple of minutes was one of the doctors who treated me as a kid. And I have to admit that little section of the episode, severely pissed me off.
I remember as a kid, I wasn't spoken to. I was spoken at, or about. But no one talked to me, explained much, or involved me in decisions. The kid in the episode was a lot more ill than I ever was, and needs oxygen overnight, and a nippy which is like a non invasive ventilator, and it pushes air into your lungs, it's usually given to people who don't breathe properly overnight, or those with sleep apnoea.
The boy in the episode wanted to be off oxygen for one night, so he could have a sleepover at his friends house. The doctor listened to this request and said they'd try and see if he can manage off oxygen and the nippy, and see how he fares; if the result of the overnight 'experiment' was successful, to say, his sats didn't drop too low, he'd be allowed to forego his oxygen for one night and stay at his friends.
This is the part that pissed me off; when I was a kid and wanted to go to a friends house, have a sleepover, or if there was something happening where IVs would get in the way, the doctors always managed to schedule IVs so the fortnight would always include that one bloody day. I'd request that they started a day later, or after the weekend if it was a Friday, and I was met with 'No'. No bargains, no requests, just 'have your bloody IVs and get lost'. Or at least that's what it felt like. Moving to Adults was surreal as I can now request IVs when I feel I need them, say I don't need them if I feel fine (in paeds I got them every 3 months routinely) and if I want them ahead of or after a certain event, I can have them done that way. Being in control of my treatment for the first time was a shock to the system, but obviously it's something that was bound to happen as in adult care, you do have to agree with the treatment. That's also how I got them to change my IVs from tobramycin, the drug that made me deaf, to an alternative (colistin). In kids, I couldn't say I didn't want the drug or wanted something different, and as the doctors (there were 2 consultants) couldn't admit that tobra was the cause of my hearing loss, they kept me on the drug for a further 6 years. Spineless bastards. I do sometimes feel like throwing something at the doctor every time I pass him in the hospital.
All that aside, the programme was good, and it showed a really good insight to what its like for a kid in hospital, and got some awareness out for CF which was brilliant. And I have to admit it was a bit theraputic yelling 'TWAT!!!' at the TV screen when that doctor appeared.
Monday, 25 August 2014
Monday, 11 August 2014
I think a tumbleweed just passed by my blog
Another 4 monthly update *twiddles thumbs* Poor neglected fucker.
Okay yes, I'm crap at the updates. I have nothing new really to report. And in all fairness, whilst I was in the beginnings of the lumacaftor/ ivorcaftor trial, I wasn't allowed to really talk much about the progress unless it was to close friends and family - there was a contract of sorts I had to sign, several times through the months every time one single word was changed, and it asked everyone not to post things on public forums or talk to strangers about it, simply just so that false information isn't put out there, and people don't get disheartened or get their hopes up. Results have now been posted and everyone has either finished taking the drugs or progressed onto taking the real drug (for definite - as there were three groups and only one group was taking both real drugs, rather than placebo or a real/placebo combo) so now I'm allowed to open my abnormally large gob about it.
If you remember last August, my 22nd birthday was met with a bit of a shit clinic appointment two days later - my lung function had halved from its usual 60-ish% and was sitting around 30/35%. I'd definitely felt it but I'd naively put it down to the heat, as I'd had salt tablets introduced a couple of weeks before when I'd had a drop of about 15%. It think the recent recovery of anaemia meant that I'd forgotten what 'good' felt like, so when I declined rapidly, it was just like going back a bit, and it was still kind of normal. If that makes sense. One mind numblingly boring two week stay and my lung function/general well being had increased. Because of the nature of the infection, the feeling good period didn't last long, and not even a month after finishing my last IVs, I needed more. But the doctor had been speaking to me about the trial, and I was very keen. So was he - nothing seemed to be working for long, weight was falling off me and we couldn't get it back on fast enough. So I wanted on the trial. The kicker was that I had to stay off any extra antiboitics for four weeks prior. This meant I still took my usual daily cocktail and nebs etc, but couldn't have IVs or cipro. It got to the point where I was desperate for them, coughing up what closely resembled a frog every 20 minutes, and not being able to get out of bed, but I was determined to get on this bloody trial. I managed, and my lung function was 40% for the 3rd attempt on the day I did all the tests to see if I was eligible, and I was literally scraping the barrel, as any lower and I wouldn't be allowed on it. They have to be ethical with trials, and if your lung function is below 40%, and the drug caused you to lose even more lung function, that would be their fault for accepting you. On the other hand, it couldn't be more than 80% so they could see an improvement if there was to be one.
As soon as I started the trial, I started IVs too so never really noticed a difference in the first two weeks, and that's when people started to notice a difference with Kalydeco. After 6 months, I'd finished the first part trial, I don't know what group I was in though. My lung function had increased back to the 60% I'd had previously (although, and people never listen to this part, you have to consider my weight gain, and also the fact that maybe because of the sudden loss beforehand not long previously, getting that last 20% back wasn't as hard as it would be in other circumstances) and I'd gained a hell of a lot of weight I could never have put on before - I'd gone from a pathetic 39.2 kg, making my BMI around 16, to about 48kg at this point. I've since gained a bit more, so I'm now 51.2kg and that means I've cracked my seemingly impossible target of 8 stone. Yeahhhh fatty!
As I say, everyone who decided to continue is now taking the real drug, and should hopefully be doing so until around spring 2016. Hopefully by then it'll be approved on the NHS though. I still go to the research dept every 4 weeks, once for a simple blood test (they have to now monitor our blood levels every 4 weeks because one person had slightly elevated liver levels, most likely not as a result but still something they have to check) and for a full work up every other appointment - basically I get an ECG, they check my obs, weight, lung function, make me pee in a cup, and then I take the drugs, eat all their food, and piss off.
My lung function hasn't really increased much since. But it is stable, and that's the important thing. I haven't had to stay in hospital since I came out last summer. IVs seem to kick in quite quickly, at least the last few rounds have, and seem to work more effectively than they used to, but I've still got an annoying dry cough lately (which could actually be any number of things, and fingers are edging towards pointing at things like hayfever, the heat, sinus issues etc). I feel better than I have in a long time, but still don't think I'm 'healthy' - I volunteer at Oxfam for one day a week, for about 5 hours, and the day leaves me feeling tired even though I'm just sitting at a computer or taking photos, so that proves to me that I'm still not ready to work. I would love to, and I keep trying to think of things I could do, but I'm seriously kidding myself just yet. I just think back to when I was 18, and had a 6 hour day job once a week, light cleaning holiday cottages - I clean my flat more than I did in those places as people left them pretty pristine. After 6 months my lung function dropped 20%. I'm not taking the risk of that again, at least not until I know I can manage it and avoid something like that happening again. Especially as my lung function and general health isn't what it was when I was 18, and I've got a few added extras since. In an ideal world I would be a photographer with my own business, but businesses are stressful and I can't do it on my own. I would happily settle as a photographers assistant however! Anyone who suggests 'getting into wedding photography' needs to think about what they're saying. I can just about manage 5 hours at a desk, chatting and drinking tea. I can't manage a full day on my feet running after a wedding party every week. So please shut up.
On the other hand, a friend recently suggested that I become a 'secret shopper' and go along the lines of trying to be served in pubs or off licences to see if they ID me. Considering I'm actually 23, but pass off for between 15-17 on average, I'd say that's probably a good idea... also a bonus if they paid for and let me keep the drink. Ahem.
Oh, and! We've been in this flat for 6 months now! At the end of the month, the 6 month lease will be up and we'll be renewing it as we quite like this flat. We've even bought a gorgeous corner sofa that I can't wait to be delivered. Mostly because these shitty ikea sofas murder your back, and it was so depressing to come back to them after sitting on various sofas that are so soft you could dissolve into them. We won't be able to stay here forever though; the stairs are quite steep and when I do the shopping (middle of the day, so John is at work, but the shops are a bit quieter) I have to leave heavier things at the bottom of the stairs providing they're not freezer/fridge essential.
All in all, not much has really changed, aside from trial stuff and settling in the flat. A good thing I suppose. I'm quite happy with the way things are, but that makes for writers block and nothing blogable. I really need to either get some suggestions or knuckle down on blog posts, in between hoovering all my meringue crumbs and cleaning up split cups of tea...
Okay yes, I'm crap at the updates. I have nothing new really to report. And in all fairness, whilst I was in the beginnings of the lumacaftor/ ivorcaftor trial, I wasn't allowed to really talk much about the progress unless it was to close friends and family - there was a contract of sorts I had to sign, several times through the months every time one single word was changed, and it asked everyone not to post things on public forums or talk to strangers about it, simply just so that false information isn't put out there, and people don't get disheartened or get their hopes up. Results have now been posted and everyone has either finished taking the drugs or progressed onto taking the real drug (for definite - as there were three groups and only one group was taking both real drugs, rather than placebo or a real/placebo combo) so now I'm allowed to open my abnormally large gob about it.
If you remember last August, my 22nd birthday was met with a bit of a shit clinic appointment two days later - my lung function had halved from its usual 60-ish% and was sitting around 30/35%. I'd definitely felt it but I'd naively put it down to the heat, as I'd had salt tablets introduced a couple of weeks before when I'd had a drop of about 15%. It think the recent recovery of anaemia meant that I'd forgotten what 'good' felt like, so when I declined rapidly, it was just like going back a bit, and it was still kind of normal. If that makes sense. One mind numblingly boring two week stay and my lung function/general well being had increased. Because of the nature of the infection, the feeling good period didn't last long, and not even a month after finishing my last IVs, I needed more. But the doctor had been speaking to me about the trial, and I was very keen. So was he - nothing seemed to be working for long, weight was falling off me and we couldn't get it back on fast enough. So I wanted on the trial. The kicker was that I had to stay off any extra antiboitics for four weeks prior. This meant I still took my usual daily cocktail and nebs etc, but couldn't have IVs or cipro. It got to the point where I was desperate for them, coughing up what closely resembled a frog every 20 minutes, and not being able to get out of bed, but I was determined to get on this bloody trial. I managed, and my lung function was 40% for the 3rd attempt on the day I did all the tests to see if I was eligible, and I was literally scraping the barrel, as any lower and I wouldn't be allowed on it. They have to be ethical with trials, and if your lung function is below 40%, and the drug caused you to lose even more lung function, that would be their fault for accepting you. On the other hand, it couldn't be more than 80% so they could see an improvement if there was to be one.
As soon as I started the trial, I started IVs too so never really noticed a difference in the first two weeks, and that's when people started to notice a difference with Kalydeco. After 6 months, I'd finished the first part trial, I don't know what group I was in though. My lung function had increased back to the 60% I'd had previously (although, and people never listen to this part, you have to consider my weight gain, and also the fact that maybe because of the sudden loss beforehand not long previously, getting that last 20% back wasn't as hard as it would be in other circumstances) and I'd gained a hell of a lot of weight I could never have put on before - I'd gone from a pathetic 39.2 kg, making my BMI around 16, to about 48kg at this point. I've since gained a bit more, so I'm now 51.2kg and that means I've cracked my seemingly impossible target of 8 stone. Yeahhhh fatty!
As I say, everyone who decided to continue is now taking the real drug, and should hopefully be doing so until around spring 2016. Hopefully by then it'll be approved on the NHS though. I still go to the research dept every 4 weeks, once for a simple blood test (they have to now monitor our blood levels every 4 weeks because one person had slightly elevated liver levels, most likely not as a result but still something they have to check) and for a full work up every other appointment - basically I get an ECG, they check my obs, weight, lung function, make me pee in a cup, and then I take the drugs, eat all their food, and piss off.
My lung function hasn't really increased much since. But it is stable, and that's the important thing. I haven't had to stay in hospital since I came out last summer. IVs seem to kick in quite quickly, at least the last few rounds have, and seem to work more effectively than they used to, but I've still got an annoying dry cough lately (which could actually be any number of things, and fingers are edging towards pointing at things like hayfever, the heat, sinus issues etc). I feel better than I have in a long time, but still don't think I'm 'healthy' - I volunteer at Oxfam for one day a week, for about 5 hours, and the day leaves me feeling tired even though I'm just sitting at a computer or taking photos, so that proves to me that I'm still not ready to work. I would love to, and I keep trying to think of things I could do, but I'm seriously kidding myself just yet. I just think back to when I was 18, and had a 6 hour day job once a week, light cleaning holiday cottages - I clean my flat more than I did in those places as people left them pretty pristine. After 6 months my lung function dropped 20%. I'm not taking the risk of that again, at least not until I know I can manage it and avoid something like that happening again. Especially as my lung function and general health isn't what it was when I was 18, and I've got a few added extras since. In an ideal world I would be a photographer with my own business, but businesses are stressful and I can't do it on my own. I would happily settle as a photographers assistant however! Anyone who suggests 'getting into wedding photography' needs to think about what they're saying. I can just about manage 5 hours at a desk, chatting and drinking tea. I can't manage a full day on my feet running after a wedding party every week. So please shut up.
On the other hand, a friend recently suggested that I become a 'secret shopper' and go along the lines of trying to be served in pubs or off licences to see if they ID me. Considering I'm actually 23, but pass off for between 15-17 on average, I'd say that's probably a good idea... also a bonus if they paid for and let me keep the drink. Ahem.
Oh, and! We've been in this flat for 6 months now! At the end of the month, the 6 month lease will be up and we'll be renewing it as we quite like this flat. We've even bought a gorgeous corner sofa that I can't wait to be delivered. Mostly because these shitty ikea sofas murder your back, and it was so depressing to come back to them after sitting on various sofas that are so soft you could dissolve into them. We won't be able to stay here forever though; the stairs are quite steep and when I do the shopping (middle of the day, so John is at work, but the shops are a bit quieter) I have to leave heavier things at the bottom of the stairs providing they're not freezer/fridge essential.
All in all, not much has really changed, aside from trial stuff and settling in the flat. A good thing I suppose. I'm quite happy with the way things are, but that makes for writers block and nothing blogable. I really need to either get some suggestions or knuckle down on blog posts, in between hoovering all my meringue crumbs and cleaning up split cups of tea...
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First and last of 2018
Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days bef...
