A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 16 December 2009

Full speed ahead

I know that it's an age since my last blog entry, but things have been rather busy here in relation to the whole passing out thing. I mentioned in my last post that I was thinking of phoning the secretary of the consultant who was supposed to have referred me to the falls and syncope clinic. I did this the following day - last Monday - only to get through to a voicemail message saying that she was out of the office until 14th December. This meant that nothing was likely even to begin to get done about my referral, and I couldn't chase it up, until this week, which is a long time when you're fainting at least once everyday.

In my desperation for some kind of answer I went trawling the net again. I know there are huge dangers in looking for health information on the internet, but I really didn't know what else to do, so I went to my usual starting place - gpnotebook. I'd looked on here before in relation to these events and not come up with much, but for some reason, on this occasion, I very quickly found myself looking at a page I hadn't seen before and could hardly believe what I was reading as so many of the things listed under the clinical features fitted my symptoms. It was a page on Postural Orthostatic Tachycardia Syndrome (POTS). I'd never heard of this before, but as I read it I couldn't help exclaiming to the cat again and again that I thought I'd found what the problem is, but then I had the dilemma of what to do with this suspicion, and in the end I hit upon the idea of printing the info off, highlighting the symptoms relevant to me, and taking it to my GP. I know that a GP's heart can sink when a patient arrives with internet-acquired info, but I really didn't have anything to lose given that I was getting nowhere fast with the consultant, his secretary, and the previous GP I'd seen (the one who'd initially had me admitted to hospital, but then sounded exasperated and said there was nothing more she could do when I phoned her after my discharge).

First thing on Tuesday morning I rang the GP surgery, asked for an appointment with one of the GPs who knows me well and got one with Dr Cg for 11am. Because I haven't seen him about any of this passing out stuff I first had to explain what had been happening, about the admission to hospital, how pointless that seemed to be, how the consultant had failed to refer me to the falls and syncope clinic, and that now his secretary is away so nothing will be done for at least another week. Then I told him that his heart was probably about to sink and I gave him the info about POTS, saying that I'd found it online and wonder if this could be my problem. I was very pleasantly surprised by his receptiveness to the internet info, but I think this was helped by the reputability of gpnotebook (he said that he uses it himself sometimes, and I know that several of my doctor friends use it too). He read the info on which, as I said before, I'd highlighted the clinical features relevant to me, and to which I'd also added some other annotations to expand on some points. We then discussed it and he agreed that POTS may well be what I have. He gave this as a provisional diagnosis, but said that it needs to be confirmed (or otherwise) by the specialists, and they are the consultants at the falls and syncope clinic. My GP was aghast at the failure of the consultant I was under as an in-patient to refer me to the clinic, and said that I needed to be seen as soon as possible. I told him about my fainting whilst cooking just a few days earlier, and that my heart rate had gone up to 180 bmp (!) on the Sunday evening when I was changing my bed sheets (usually my carer does this, but the cat had been sick all over them, and I wasn't going to sleep in cat sick so I had to change the sheets), and he already knew that I live alone. Dr Cg said he'd fax through a referral himself, that he'd write 'URGENT' on it in big letters, that he'd write it in red even though the colour wouldn't show on the fax, and that he'd list some of my risk factors. I got the impression he was saying to the clinic, 'This case is urgent. No, I mean it. I really mean it! You absolutely must see this patient, because I really, really, really mean that this is URGENT!!!' He said that I ought to have an appointment for two or three weeks time. This still felt like a long wait, but a heck of a lot better than the nine weeks I'd been quoted by the clinic, and that's nine weeks after the referral has reached them, been read, and been processed. I went home finally feeling like I was getting somewhere.

On Thursday morning I went up to Freeman to be kitted out with the 24 hour ECG equipment, which did produce the predicted blisters despite the extra antihistamines, but I had little choice but to put up with it as it was important to get it done. Although I was feeling rubbish and didn't really want to do anything much I knew that lying on the sofa wasn't going to give a clear picture of what's been happening with me so I forced myself to be as active as possible, which isn't very active at the moment, but it's more than being stationary. Spending more time being upright meant that I spent more time doing unplanned close floor inspection, which is usually a very bad thing, but on this occasion it meant that I could record it in the events diary I'd been given and the docs would be able to see if the fainting related to anything going on with my heart. It was a tough day. During the afternoon, though, I received a phone call from the falls and syncope clinic telling me that they'd had a referral for me from my GP who thinks that I need to be seen quickly (he'd obviously been effective in his insistence that this is an urgent, and I mean URGENT referral), and would it be possible for me to go along to the clinic the next day! Of course it would! I couldn't believe it. Only a couple of days earlier I had no referral, thought I was going to have to wait until at least February or March to be seen, and now I had an appointment for the next day! Amazing!

So on Friday morning I first of all went up to the Freeman to drop off the 24 hour ECG kit. I asked who the results would be sent to and was told it would be the referring consultant, which is no good to me as I have no follow up with him - not surprising given that he's a gastroenterologist on the drying-out unit, but I somehow ended up with him as my consultant. I asked if the results could be sent to my GP, and was told that they could be if I wanted them to be, but the technician did look rather surprised at the request for some reason - weird. Anyway, with that sorted, I went straight over to the RVI to the falls and syncope clinic where all the staff were very lovely :o) I was seen very quickly and taken through to a kind of testing area with several curtained-off beds each with a set of monitoring equipment. They did a couple of pretty basic tests - primarily lying and standing ECG and BP, and continuous BP at rest for 5 or 10 minutes before the standing bit - and then I was taken through to see the consultant. She was lovely too, and is a professor with a particular interest in POTS and fatigue. She took a full history, asked various things to do with life-style and any other health problems I have, especially those requiring hospital over-seeing, and then, even before I mentioned it, she said that heamodynamically I fit the criteria for Postural Orthostatic Tachycardia Syndrome. However, just before I could ask for my honourary medical degree for my success in self-diagnosis ( ;oP ) she said that she wanted to see the results of my 24 hour ECG before confirming or rejecting the diagnosis. She looked on the computer there and then to see if the results had been processed, but seeing as I'd only handed the kit in about an hour before hand I wasn't surprised that they weren't on the system. She wants to see me again this week, and I have an appointment for 9am Friday when the ECG results will definitely be through and the prof will have had a chance to look at them. It's so good that I'm being see so quickly, though I have to say that it's slightly unnerving that the prof wants to see me two weeks running, because that never happens in out-patient clinics unless there's something to worry about. Mind you, I'm worried anyway. So on Friday I may come away with a diagnosis, and with that I may be able to start some kind of treatment, and that may help me to begin to feel better and not be passing out everyday. It would be so good not to have my heart pounding away at a rate of knots almost all of the time, and not be almost afraid of standing up because it's going to get unbearable and I'll end up passing out, or at the very least feeling really ill. Unfortunately, if I do come away with a diagnosis of POTS then the first line of medication treatment that's most effective for most POTS patients is a no-go for me - beta blockers. As the name suggests, they block the beta receptors, which are the exact receptors that some of my asthma meds stimulate. If I were to take beta blockers then I would quickly die from a severe asthma attack. There are one or two other options, so it seems, but I'm not going to look too closely into any of them until I know for sure whether or not this is Postural Orthostatic Tachycardia Syndrome, or if it's something else. However, what I have learnt is that if this is POTS then none of the treatments are curative, but rather they manage the symptoms. If I'm going to have to have something else wrong with me, which it seems that I am, then it would be quite nice if it were something that could be cured ... for a change. From my conviction that I'm right in my self-diagnosis, I suspect that God isn't planning on my having something curable, which is a bit pants if you ask me, but whatever it is my only option is to find a way through, a way forward, and to adapt to another change in life. I predict that I'll get fed up and have tantrums, but I also predict that I'll survive and I'll find ways to live life to the full, even if I have to check out the floors of all the places I go.

Now then, it's stupid o'clock and I should be in bed so I'm going to make up a hot water bottle and take myself off to the land of nod. If I don't get back to you before, then I'll certainly let you know how things go on Friday.

1 comment:

Beth said...

It's all happening at last!

Just wanted to let you know that I really do appreciate the messages even if I don't reply. I'm sorry I've pretty much fallen off the radar at just the same time you need support :( winter 2009 not the best season so far.

take care. i hope you get good news on friday. xx