Plumbing and ventilation

So sorry that I haven't posted for a couple of weeks. This is partly because I had some time away in Edinburgh visiting my mum and step-dad, and although I took my computer with me, I spent more time reading and doing cross-stitch than online. Since coming back I've been a little distracted by still not feeling too well and very much trying to stay out of hospital.

I had to postpone my trip up north by a day and a half because I had a call from Dr G's secretary offering me an appointment to discuss the portacath situation. Having waited for this for so long (or at least it seems that way) I wasn't going to turn this appointment down, so on the Thursday afternoon I made my way to the RVI to see Dr G. He went through the possible risks of the operation - mostly that of a collapsed lung - and those of post-op - mainly infection - and he showed me a portacath and explained how it was implanted. I'm having the op on Tuesday, this coming Tuesday! It's another of these ops that's done under local anaesthetic, although Dr G did say that he'd give me a little sedation. He also said that if anything did happen to go wrong (only occurs in about 1% of cases apparently) then he'd be there and he'd deal with it. I have confidence in Dr G. I've met him on several occasions and know that he's highly competent. He can sometimes come across as a big bear of a man, although he does seem to have shrunk in size a little in recent times, but his personality is as big as ever.

When Dr H agreed to the possibility of a portacath he said that there was one proviso: that the portacath not be used in A&E, but when I was in A&E a couple of months ago and they asked me if I had the port yet I told them no and that I'd been told A&E wouldn't be able to use it. They'd said they would in a life-threatening situation. Hmmm. I said all this to Dr G and he responded by saying that yes, in a life-threatening situation then A&E could use it and (aside from the risk of infection) one of the main reasons they wouldn't be able to was because they wouldn't have the right needle, but he'd give me some of these just for a life-threatening attack in A&E. Okay, thanks, but what about those attacks where I'm in A&E but it's not quite life-threatening? 'Well,' he said, 'What you do in that situation is you say, "GET THE F*** OFF!" and then they can't touch it.' Errr, right. I can't quite see myself either using quite that language in A&E, nor having the breath to scream obscenities at them, but I'll do my best to come up with something as effective. Then it struck me. Here I was sitting in this little room with a doc who'd just screamed 'GET THE F*** OFF!' and soon I was going to have to walk out of there, into the waiting room with quite a number of people in it who will likely have heard the exclamation! So a short while later, when the consult was over, I decided there was nothing for it - I was just going to have to walk tall, look confident, and smile. I did. I got several wary looks that followed me to the reception desk and then up the corridor as I left.

So here I am now, three days away from becoming a little bit more bionic. At the moment I'm not that nervous, although I'm sure I will be at least a little nervous come Tuesday. I'm just really, really hoping that my lungs are up to it. Dr G is both a respiratory consultant and an ITU doc so I'm in very safe hands, but there'll also be no hiding lung naffness from him.

Whilst my personal ventilation isn't going too well, my flat's ventilation is doing marvellously, thanks to the folk at EnviroVent. You will no doubt remember that after my appearance on the local news supporting Asthma UK's Fighting For Breath Report, EnviroVent contacted me via BBC to offer me free installation of some of their equipment as they thought it might help me. This resulted in a second TV appearance, but more importantly it's resulted in much purer air in my home. It'll take a while, I should think, to get the full benefit as dust mites and any mould spores don't disappear overnight, but the air is certainly much improved. The time that I first noticed a real difference was a few days before I went up to Edinburgh. It was extremely muggy and humid outside and when I went out to the shops I could barely breathe. Back at home there was none of that humidity and suddenly breathing was so much easier again. I spent the rest of the day inside, and have done so on several other similarly humid days since. I know it's not a magic cure, but it's already helped in at least one situation and that is so unexpectedly fantastic. Unexpected because I didn't expect anything ever again to be offered to me that might, just might help my asthma in any way. Here's to EnivroVent!

Results!

Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.

Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...

Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.

It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.

Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.

Results all round!

In the news

Last Thursday Asthma UK published a new report on severe asthma, and more specifically about the discrimination faced by many with severe asthma and their specific needs. The report is called Fighting for Breath and you can read it here. It's an important document because so little is understood by the general population about severe asthma, so anything that highlights the condition is a good thing. With this need for publicity in mind, Asthma UK put out a call for people with severe asthma to contact them if they'd be willing to help the cause. I responded to this call, was then asked to tell them a little more about my 'story', and consequently they phoned me, and asked if I'd be willing to speak to the media. They'd sent out a press release to various places around the country and in the north east they'd had responses of interested from BBC Look North (local TV news programme), BBC Radio Newcastle, and BBC Radio Teeside. At first I wasn't all that keen about doing TV as I'm so self-conscious about my weight, but I had to remind myself that the cause is the important thing, so I put my insecurities aside and agreed to do both the TV and radio programmes. Radio Teeside never got back to me, but I was on the 'Alfie and Charlie at Breakfast' show on BBC Radio Newcastle at 8.25am on Thursday, and on BBC Look North on the 6.30pm programme. I have to say that the Alfie and Charlie at Breakfast programme was rather early for me, so unbeknown to the listeners I did the phone interview lying in bed in my pyjamas. Tee hee hee. I think it went okay for the most part, although I kept losing my train of thought and at the end I kind of petered out, but I think I got over what I wanted to say ... mostly. Mind you, it would've been helpful if they'd kept to the questions they'd said they were going to ask me and had sent me on Wednesday. It was, however, helpful to think through all they asked in these questions, and I was able to incorporate some of my thoughts on these into answers to the questions they ended up asking me.

At 10.30am on Thursday the reporter/interviewer from BBC Look North came round. Joanne was lovely and helped me to relax and lose some of my nervousness. We started off with a chat about my asthma, how it effects me, experiences in hospital, how my daily life is effected, my need for carers, the rubbishness of the benefits system and their lack of understanding of severe asthma and my experience of that (I had an horrendous experience with the benefits system a few years ago). She then set up the camera, sat behind it and asked me some of the same questions again while the film was rolling. That was a bit weird, because my response then wasn't spontaneous so oddly wasn't as coherent as first time round. Overall it went okay though, and in the final cut they had some of what I said as voice over as they showed me around the house, because after we'd done the interview bit Joanne spent a while getting visual shots without sound. We went into my bedroom first and she filmed me opening my drawer of medicines by my bed, taking out the box of prednisolone and popping three of the tablets onto the bedside cabinet. Then she wanted a shot of me using my nebuliser, but as I'd already had my morning dose she was afraid that if I put any medication into it then I'd overdose (I thought this was quite amusing given how much salbutamol I have when I'm ill, and I was aptly having a fairly rubbish morning with my lungs too) so we didn't actually run the nebuliser - I just put the mask on and sat there looking at the machine ;o) After that, Joanne wanted some film of me using my wheelchair so I spent a while going in and out of the flat as she filmed from different angles. When she was behind me she saw the stickers I've put on the back of Taz (electric wheelchair), one of which says, 'Chaos. Panic. Disorder. My work here is done.' The other says, '0-60 in 15 minutes.' She liked them a lot, filmed them and they ended up on the telly, as did Zach (the cat) because she took a liking to him >^..^< Tee hee. When I was outside she wanted me to run my fingers through the fresh herbs and then pick some of the basil. She took a while filming this and I was a little anxious that I was going to end up with no basil plant left ;o) Thankfully there was plenty left, but I also had plenty to go with my tomatoes and mozzarella for lunch :o) So that was pretty much it, and an hour after Joanne had arrived she went as she had to have a snippet back for the lunchtime programme at 1.30pm, with the longer version ready for 6.30pm. It was awful seeing myself on telly, and watching it I couldn't really concentrate on what was being said, but I think it was okay...

While my carers were here on Thursday and I was in the bath I missed a call from a guy in the Look North news room, but he left a message and I got back to him this morning. He'd had a call from a company in Harrogate - EnviroVent - who'd seen me on the telly. They make air filter machines that are supposed to combat humidity, condensation, dampness, and ultimately dust mites, and they think that their products might help me, so they're offering to install one of their machines into my flat for free! Apparently it usually costs around £800!! This is an amazingly generous offer of them, and anything that has potential to help has to be tried, so I've jumped at the chance. Of course, EnviroVent want some publicity, which is likely foremost in their mind when offering this to me, but that's fine by me. So John from the BBC Look North news room got back in touch with EnviroVent after he'd spoken to me, and within half an hour I had a call from them to talk through it. As I live in a property owned by the council then we may have to get permission to have the machine installed, but since I don't know who to get in touch with then EnviroVent are contacting them on my behalf, and I'll get in touch with the council then if I need to, guided by EnviroVent on who I need to speak to. Apparently EnviroVent have put one of their machines to one side for me, and can fit it almost immediately when they get the go-ahead. The only delaying factor, after the engineer has been to see where would be best to have it, and any other products that might be helpful, is that Look North want to come and film the machine being installed so that they can do a follow-up item. I guess this is dependent upon it being helpful to me, but it could mean that I end up on the telly again, which isn't good for my insecurities, but is brilliant for publicity about severe asthma. Both EnviroVent and John from the news room have told me that the machines are endorsed by Asthma UK and have also had recommendation by some hospitals/NHS Trusts, so this definitely isn't a gimmick or untested. How exciting! Okay, it may not help me, but there's a chance that it might, and it's a very long time since there's been any suggestion of anything that might help.

I'll let you know what happens.