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

Today is the tomorrow that you worried about yesterday.

Friday, 23 April 2010

The ups and downs and ins and outs

Phew, it's been a bit of time of medical things and hospital appointments lately. Last week I went back to the falls and syncope clinic at RVI for another tilt table test, but this time 'in a hoover back', as it was described to me at my previous appointment. It turned out not to be a hoover bag as such, but more of a vacuum chamber that covered my lower body and came up to somewhere around the bottom of my ribs. The test started with me lying flat for five minutes or so, with my bp and heart rate being constantly monitored, and then the bed was tilted to about 70 - 80 degrees. The vacuum was kept off for the first ten minutes, so I was just standing there (the bed has a footplate), although I felt incredibly nauseous and kept retching. The almost-upright bed was at such a height that I was towering above the nurses and the consultant and I imagined that I was going to throw up all over the tops of their heads. Thankfully I didn't, and I'm sure they're even more thankful! Although the nausea had started only a few minutes into the test, I lasted for a total of seventeen minutes, with the vacuum having been turned on after ten minutes. The last thing I remember saying was, 'I think I'm going to go.' I was right. I passed out and came around with the bed flat, the vacuum chamber removed, my legs up on a beanbag and the consultant wiggling my feet. It's bad enough fainting when I'm on my own or even when there are other people around who are just getting on with life, but it's another thing having people stand around, watching, and waiting for you to pass out. It's also not so great when those who have just seen you pass out are really pleased that you have done. The consultant was just a bit too happy about it for my liking ;oP Anyway, he said that my blood pressure 'went ridiculously low, but it was conclusive.' I asked about my BP, and was told that it had gone from 128/70 - text book normal - to 20/0 - barely a BP at all! So the conclusion is that as well as POTS, I have vasovagal syncope. Now the medication I was on for the POTS - ditiazem - has the potential to lower BP so it obviously wasn't a good idea that I stay on it, and it's been changed to ivabradine, another med really designed for angina. I've started on a very low dose, but it's planned that this will be increased in another couple of weeks time, so hopefully I'll see a bit more improvement in my heart rate then, because at the moment it's going faster than it was when I was on the diltiazem, though still slower than it was (most of the time) before any medication. So that's where I'm up to ... or down to ... with the falls and syncope clinic, and I'm due back in 11 or 12 weeks.

On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.

As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.

I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.

Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.


Dawn said...

Goodness Becky, sounds like you've had more than enough to keep you busy!!

The tilt table test sounds awful, but I'm glad that you have the diagnosis and new meds to take - I hope they help!

I think I can understand what you mean about being 'pleased' about getting the portacath. I've had a few issues myself with near fatal asthma attacks and the docs being unable to get IV access, anything that can help in those horrible situations is definitely a good thing :)

Lol your story about the taxi made me laugh! Poor women having someone get into her car like that, you must have been so embarrassed! Hahaha.

I hope that you have a somewhat more quiet time coming up so you can get some relaxation time in!

Dawn xx

Grumpy Old Ken said...

Thought the car bit was hilarious. Glad you can still smile in spite of everything.