Well, Wednesday last week was my first trip to hospital for the New Year.
I have a new carer in the mornings, and he has been a bit erratic with his time keeping, but he has assured me that he will be with me at 6.00 am. As I've overslept the last couple of times I've been going to hospital, and the worry if my carer will turn up on time, I keep waking up during the night to check the time.
Well I needn't have worried. As good as his word he is with me at 6.00 am, and he gets me up, showered and dressed.
I have my pills and my breakfast, and am all ready to go, when the transport arrives at 7.00 am. Its not the normal driver, but a very nice young lady, and she soon has me strapped in and on our way.
We take the normal route into London, through Thornton Heath, Streatham and Brixton, and then follow the South Bank of the Thames before crossing at Waterloo Bridge. And then we suddenly head off into East London. I assume the driver must have had a call to pick up another patient, as its such an unusual way to go.
Anyway we get the other patient, and head off to the hospital. On the way a van driver pulls out on the ambulance, and with some good evasive driving we only lose the wing mirror. After getting the van drivers details, we are on our way again, and make it to the hospital right on 9.00 am.
After a dash to the toilet, I make my way to the ward and get checked in.
The nurse looking after me today is a really nice guy call Tinashe. He has been part of the nursing team that has looked after me for years, and he is a very friendly guy. We have our customary chat about football - he's an Arsenal fan.
I call my respiratory physio, Christine, as we had arranged to meet today. Sadly she is off sick, but her assistant Steve, offers to come and see me. He has the results of the lung function tests I had done late last year, but he can't find the results from the year before, to be able to say if there is any change. My impression is, that if there has been a change it will only be marginal, so we agree that I'll email Christine, with the date of my next appointment, and discuss these then.
As Steve leaves, one of the cannulation team arrive, and put the cannula in my left arm and take some blood for regular tests. Then its just a case of waiting for the drugs to turn up. I am having my regular 6 weekly Methylprednisolone (250 mg). Whilst I wait I read my book.
After sometime a young lady comes in, who I have meet before. She is partially sighted, and for the first time she is using a white stick. She is always very jolly and upbeat, and never seems to let her disabilities get her down - the partial sightedness is only one of many. She always jumps up and helps me open the toilet door if she sees me struggling. She sits and uses her iPad, which is loaded with software so that it talks to her about what she is doing, as she has difficulty seeing the screen.
After a cup of tea and a packet of biscuits, my drugs turn up just after 11.00 am. I am hooked up to them, but know that it only takes an hour for these to go in, plus a 10 minute flush of the line.
So about 12.30 pm the drugs have gone through and the line has been flushed. At this point my consultant, Professor Chris Denton, arrives. He has been my lead consultant for about 15 years, and is very good. He is really interested in his patients and takes a real interest how we are doing as individuals, and coping with our conditions.
Because of the need to use hospital transport to go to see him, I no longer attend his clinic, but I go for treatment on a Wednesday, because I know he does his ward rounds on that day. He knows that I generally have a good understanding of my conditions, and that I am aware when something is wrong. We therefore have an understanding that we don't need to see each other every time I am at the hospital for treatment, but if I need to see him, I call his secretary, and ask her to point him in my direction, next time I am there.
We discuss how I am generally, and I show him some pictures of me standing in the Levo C3 powered standing wheelchair. He is really pleased that I am able to use this, but also that I feel I'm getting some benefit from it.
The reason I have asked to see him is about my Methotrexate. I take 25 mg weekly on a Saturday. I have been in this dose for years, and have usually taken it orally, but for sometime injected myself. I have never had any particular problem with Methotrexate, until recently.
During the last 6 months, I have noticed that more and more regularly, I have started to feel unwell on a Saturday after taking the Methotrexate. Sometimes this is just for a couple of hours, but more and more regularly, I spend the whole day feeling nauseous, worn out and with no appetite.
We discussed this for a bit. All my blood tests are fine. Professor Denton, still wants me to be taking Methotrexate, as although we aren't completely sure what its doing, as part of my overall drug regime, it seems to be helping me keep reasonably stable. We therefore agree to reduce the Methotrexate to 20 mg weekly, and see what happens. We could look at changing how I take my Folic Acid as this might stop the sickness.
He stresses that if my DM and IBM start to deteriorate as a result of this change, I must contact him immediately.
After he goes, Tinashe comes and removes the cannula, helps me on with my fleece, and after making my next appointment, I'm on my way.
I check in at transport just before 1.00 pm.
After having waited a while a lady comes in, in a wheelchair, pushed by her husband and with her daughter. There aren't many seats left, but they put the wheelchair next to mine, and the husband sits down behind me.
He then proceeds to spend the next couple of minutes kicking the wheels on the back of my wheelchair. Just as I turn round to tell him to stop, he gets up and announces that he is getting the bus home, as he is bored, and the daughter can go in the ambulance. As he leaves a huge cloud of stale smoke smell goes with him.
The lady sits in her chair and you can hear every breath in and out is an effort. She seems to rattle as she breaths, and everything seems to be an effort.
Not long after this she is taken out to an ambulance to go home. About 5 minutes later - and after a 90 minute wait - I get taken out, only to find the lady sat in her wheelchair, puffing away on a cigarette!
Anyway, we get underway about 2.30 pm and after a trouble free journey, I get home just after 4.00 pm. I am exhausted.
After dinner, I sit down to watch the football and don't get to see much of the game as I've nodded off.
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