Last weekend I was approached by one of my neighbours while I was out shopping in the local small supermarket. She's someone I've seen around a lot, but never actually spoken to, but this is an area with a good sense of community so it wasn't much of a surprise that someone I frequently saw in the street should stop to speak to me. What was a little surprising was that she was asking me about my care needs and what care I currently get. It turns out that she used to be an occupational therapist, took a career break to have children, and now that they're all at school she wants to get back into work, but OT jobs seem to be a rarity so she's thinking of becoming a carer or PA for the time being. She was asking which agencies my carers come from, so I told her and explained that they're sub-contracted from Social Services. So then she asked about whether I'd ever considered getting direct payments so that I could choose my own carers, and I explained that it was something I'd recently been thinking about, but I don't think it's possible as my care is now paid for by the NHS after the Continuing Care Assessment I had last year. Anyway, she was lovely and I said I'd be happy to give her the phone numbers of the agencies that provide my carers in case she wanted to get in touch with them about employment. She popped round to my flat a little later that evening and we had another lovely chat, during which she asked if I'd consider employing her as my carer, and that she could supply references and get a CRB check etc. Although this might seem a bit odd given how quickly and unexpectedly this has all come about, she is actually someone I would consider appointing as a carer (providing she can cook! ;oP ) if I could get direct payments. I decided I'd enquire about the possibility of direct payments and found the address to email the right department. That was on Friday/Saturday night, and I had a phone call back from them on Monday morning, but unfortunately the news wasn't good, and it seems that because I now have my care paid for by the NHS then I can't get direct payments, which seems not only daft but somewhat unfair. Why shouldn't I be able to choose who my carer is just because of the funding body? The social services person who phoned me back (it may even have been a social worker) did give me the phone number of the 'nursing assessors', whoever they might be, who may be able to help, and a friend of mine who's a social worker has said that it may be that something akin to direct payments is an option, but with a different name. I've yet to contact the nursing assessors, but I will do when I've got a bit of time not taken up with study and hospital appointments.
I've had two hospital appointments since Thursday. The first was with my asthma consultant, Dr H. I wasn't expecting anything much as there are never any new treatments on the horizon that'll be suitable for me, and sure enough, this is still the case. However, Dr H is unhappy at the huge dose of predisolone I'm on and have been on for well over a year now - for the past eighteen months I don't think I've managed to get my pred dose below 85mg, and at the moment I'm on 100mg! This is down from the 125mg I was on at the beginning of the year, but not by much and it's still an absolutely enormous dose. Now it should be that a corticosteroid is a corticosteroid is a corticosteroid, but Dr H is wondering if I may respond better to another one - not pred - so we're considering changing over to Kenalog. He said it's tricky to work out comparable doses of Kenalog to prednisolone, and he also explained that Kenalog is given as a depo-injection every few weeks, rather than by tablet. This would kind of be an advantage I suppose as it'd be one less medication (and a whole load of tablets) to have to think about, but I guess the disadvantage is that the dose can't be varied so if there's a brewing splat I don't know if I'd have to up my steroid intake with extra pred... I guess that'd be something to discuss with Dr H, but the final decision on Kenalog hasn't yet been made. We're both going to think about it over the next few weeks and then perhaps come to a decision when I next see him. I'm hoping that this will be in clinic in May, but I'm not convinced I'll make it that long without another splat. The old breathing bags are being quite grumbly and unpredictable at the moment, and my peak flows are more erratic than usual with an emphasis on being low :o( I'll keep you posted about all that.
Today I had an appointment at the Falls and Syncope Clinic, and again I wasn't expecting any miracle cures, and again I was right that there aren't any miracle cures. However, the doc does want to see if they can get me any better than I currently am, with less passing out, less falling about, less dizziness, less POTSiness and vasovagal syncope-ness all round. He said that the first thing to do is to get a 24-hour blood pressure monitoring, so he's put me down for that between now and my next clinic appointment. He said they monitors seem to be coming available quite quickly at the moment so I may not have to wait too long for that, which would be good, especially as he wants to see me back in clinic in six weeks time. After that there are a couple of possibilities primarily targeting my tendency for low blood pressure (and vasovagal syncope), the first of which is the mineralocorticoid Fludrocortisone. I think it works by causing retention of water and therefore raising blood pressure, but of course, as a steroid, it has all the possible side-effects of steroids too ... not that that's going to be increased very much from what I'm already on for my lungs. To be honest, I'm not thrilled with the thought of intentional water retention after my miserable experiences of unintentional water retention, so I'd prefer the second option - Midodrine. I don't yet know a huge amount about midodrine, other than it raises blood pressure (and a very little bit about how it does that), and that it's not currently licenced for raising blood pressure so it'd have to be prescribed off-licence. The doc explained some of the potential side-effects, the most notable being that it can reduce potassium levels, which may be a concern as my nebs can do that too and low potassium levels can be dangerous to heart function (and other organ systems too). The other side-effect he said that some people find intolerable is a kind of goosebumpy feeling as the med makes all your hairs stand on end. I'm not sure which of those two drug options I'd prefer. The doc said he'd prefer to try fludrocortisone first, but I think I'd be more inclined to try midodrine first, though I suspect that at the end of the day it'll come down to the doc's preference, not mine. Before a decision is made, though, we'll see what my 24-hour BP monitoring shows.