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

Today is the tomorrow that you worried about yesterday.

Wednesday, 30 June 2010


At the moment I feel as though I'm spending most of my life sitting in doctors' waiting rooms. As you know, a couple of weeks ago I had an appointment with an ENT consultant to see if they could help with the chronic dizziness and imbalance that I have due to the POTS. They can't. I was only in the room for five minutes max, during which time the consultant seemed rather perplexed as to why I might need his help... He got a little excited when he asked about the tinnitus that I get and as well as it being in my ears it's often in the middle of my head. I know this is also due to the POTS, but suddenly the consultant wanted an MRI scan of my head to check for any anomalies in my brain! I've got an appointment through for this at 6pm this coming Friday. I'm not expecting there to be any problems, and it all seems a bit pointless as I'm sure the tinnitus is being caused by the POTS, and also, that's not why I went to see the ENT doc and I'm no further forward with any management of the dizziness and imbalance. Okay, so neither are related to my ears, but ENT docs deal with people all the time who are dizzy and have rubbish balance because they do have problems with their ears, so surely they must have ways of managing it???

Tomorrow morning I have an appointment with my asthma consultant. There won't be any miracle cures, but I'm hoping there might be some suggestion at least of what's making my lungs so grumpy at the moment. They've never really settled after my last admission and I haven't had a decent night's sleep since I got home. I got a chest infection shortly after coming back home, but I'm pretty sure the antibiotics the GP gave me cleared that up, although I'm still coughing up some nasty stuff (I won't go into detail, which I'm sure you're very pleased about). I dunno, maybe there won't be anything Dr H can suggest tomorrow, after all, it's probably 'just' my lungs being their usual stroppy selves with no discernible reason, but maybe... The other thing I'm hoping for tomorrow is that Dr H will be able to give me some idea of when my portacath op will be. It'd be good to know roughly when it might be so that I can plan the summer a bit, because at the moment I can't really put anything definite in the diary, and I'd like to go up to Edinburgh to some of the book festival at the end of August if possible. Dr H won't be able to give me any exact timing as he won't be doing the op - that's going to be Dr G at RVI - but he may know roughly how long I'll have to wait.

So that's two hospital appointments with consultants and one for a scan. I was also at the General Hospital on Saturday evening, although this was to see the out of hours doctor. I'd seen my GP at the beginning of last week because I had pain in the veins in my right arm and it felt like it was burning inside. It started in my hand and was really tender, and the GP thought that maybe it was vasculitis, but seeing as that morning I'd just taken the last dose of antibiotics for the chest infection she didn't want to immediately give me any more, and I'm already on high dose steroids for the asthma, so she said we'd see how it goes, but told me to go back if it got any worse. Well, it got worse, and while I thought I'd be able to hang on until after the weekend it was getting increasingly painful, and I was starting to get neuropathy in my hand. The pain, inflammation and swelling was also spreading up my arm, so that by Saturday evening it was two thirds of the way up my forearm. A GP friend of mine said that I ought to get it looked at so after a bit of procrastination I phoned the out of hours doctors service to ask for advice, who also thought that the doc should see me. The OOH docs are at the General Hospital, so I was given an appointment for 9pm and I duly took myself up there, where the doc agreed with my GP that he thought it was vasculitis, and seeing as it was now several days since I'd finished the antibiotics I'd for my chest infection and now my arm was getting worse he gave me a prescription for some more antibiotics.

On Monday morning I woke up with conjunctivitis in my right eye, so I then had to get an appointment with one of my GPs. When I phoned up there were no appointments left with any of the docs in the practice so I went on the waiting list in case of any cancellations. I wasn't very hopeful as I was told there were a few people ahead of me on the list, but I did in fact get a call back and got to see the doc in the late afternoon/early evening. He gave me the drops I needed for my eye, but also had a look at my arm and decided that he'd give me a second lot of antibiotics for it to take in addition to the ones the OOH doc had given me. I have to say that I took the opportunity to have a little moan about feeling like I'm physically falling apart at the moment. I wondered if there was any connection between the various decreptitudes, but he said he didn't know, and he didn't suggest trying to find out ... not that I'm sure what 'trying to find out' might entail ... I'd just like all the bits of me that aren't working properly to start working properly, and to keep working properly.

Oh yeah, and I was also at the GP seeing my regular doc on Wednesday or Thursday last week. This at least was a planned appointment - a check on the ivabradine I take for my heart rate. We've gradually been increasing the dose, but we have to do it slowly in case it causes my BP to fall, which wouldn't be good for the vasovagal syncope. Thankfully, this time there wasn't any significant drop in my BP when the doc checked it, although he did get a little excited at being able to hear the increase in my heart rate when I stood up (he was using his stethoscope. It wasn't that he suddenly developed the powers of super-hearing). I'm not convinced this is a good thing as that's what the invabradine is supposed to be helping with... Oh well. Anyway, the meds are now at the dose that Dr N at the falls clinic suggested we aim towards - 7.5mg twice a day. I see Dr N in clinic again next week.

I should get out more ... and not to doctor and hospital appointments. Actually, I have been doing some other things, but a lot of my energies have gone into these various appointments, and again illness and physical decrepitudes seem to be taking over.


ginge said...

ENt are always rubbish! They are meant to be experts in ear, nose and throat but i know of several occasions when they have failed to spot a cleft palate! Not that hard, its a big hole between the NOSE and THROAT!! As far as i know the paeds ones only notice hearing loss and tonsils and everything else they pass the buck to us!

vivienne blake said...

Having had an OU friend in a wheelchair to stay last weekend, I was with another friend in similar straits, we agreed that a body transplant might be a good idea.

Bon courage,

Grumpy Old Ken said...

Your patience is greater than mine. Very sympathetic after last months happenings. Keep fighting

BeckyG said...

Ginge, it's awful that ENT are so rubbish that they could miss a cleft palate! I'm not a medic, but I'm sure I'd spot a big hole in a child's palate. Okay, so they're probably not all useless when it comes to these things, but the fact that any of them are is bad.

Viv, I think a body transplant might be a good idea. Probably the only way to fix me lol

Ken, I reckon we're called 'patients' for the very reason that we have to develop patience ;o) That said, it's not always easy, is it? How are you doing? I'll have a a look at your blog to catch up, but hope you're keeping on fighting too.