medication

A bit of a shocker . . .

/ Tony / Leave a comment

It was an INR (see my brief guide) test day today. It’s been 5 weeks since the last test so I had no expectation of it being correct. It is never consistent and over the past few tests, it has been rising. So I was fully expecting it to be ‘out of range’. My range is 2 – 3.5 with an overall target of 3. This means my safe blood clotting range is between 2 and 3.5 with an ideal clotting value of 3.

I was expecting the value to be at least at the top of the range but quite possibly over the maximum. What I wasn’t expecting was the value to be lower. I could never imagine it to be as low as 1.3.

The nurse who regularly does the test looked quite worried and decided to repeat the test. But it came back the same! She decided that in cases like this, I would need to have injections of Heparin to ‘keep me safe’ and get the INR value back to where it should be.

So, the medication was quickly prescribed, and a nurse was assigned to explain and show me how to take the injection. I have never self-injected and so it was a bit of a concern. But it was not painful and I am confident I will be able to manage. It only going to last for 5 days and by then, hopefully, I will be back on track.

We have no idea why the value was so low. The tester asked all the usual questions: had I missed a dose, was I taking supplements, was I on any other medication. All were a ‘no’ and the only thing different about this past two weeks was that K**h and I have cut down on alcohol. It seems that could have been the cause. But I don’t know.

The downside to the morning was that instead of it taking 10 – 15 minutes for the procedure, the whole thing took nearly 2 hours. Which included having to go to another pharmacy to pick up a special box to put the used syringes in!

Hope it’s for the best . . .

/ Tony / 5 Comments

The results from my 24-hour ECG came through last week. It seems that I do not need the Cardioversion treatment. The Cardiologist felt that the results didn’t warrant it and I was prescribed an ACE Inhibitor. My GP explained, or tried to, over the phone that this drug would help “relax my veins and protect my heart“. So at the present time, I am taking 1.25 mg of Ramipril with an instruction to book a blood test in 2 weeks time. It will then be decided if the dosage needs to be increased.

So that means that I am now on 6 different medications a day. I’m beginning to rattle a little I think. I have alarms set on my phone as some of the medications need to be taken at around the same time every day. It’s got to the stage where I need 2 Dosette boxes. One for the morning and another for the evening.

I’m quite pleased that the Cardioversion treatment is off the cards. I have read seen and pictures of the process and it was somewhat worrying. A number of people that have had it done have related that it does not always work, and that it can only be done once. So I could have ended up with the new medication anyway.

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The cardigan I’m knitting for my granddaughter has reached a critical stage. the main body is complete and I’m at the point when I am ready to start knitting the sleeves. And there is the problem! I will have to use double-pointed needles (DPNs) for this part of the job as the number of stitches involved means I cannot use circular needles in the standard fashion. I find using DPNs quite difficult and have never really had to use them except for a few rows when I was finishing a beanie hat.

I could use a technique called Magic Loop, but that is something I have never tried and wouldn’t want to learn on this piece of work.

So, the problem I face is … do I persevere with the DPNs and hopefully manage without any issues, or … do I put the work to one side and learn the Magic Loop technique with some scrap yarn. I am told that it is quite easy, once I have learned it, but it is ‘biting that bullet‘ which concerns me.

I will then have a button band to work on, and that is a different ball game altogether.

Strange and scary . . .

/ Tony / 4 Comments

It started Saturday morning. I began to notice a slight ache across my chest. I thought it was the result of coughing and that I had strained some muscle. However, it seemed to get stronger slightly as the day went on. By around 6:30, it was a lot more noticeable, but I still put it down to the previous coughing.

Went off to bed around 11:30 and the ache had now become a pain. I was now beginning to wonder what was going on. I couldn’t sleep or get comfortable and went downstairs to get a warm drink. My wife followed asking what was wrong. I explained about the pain, which was now much worse. We decided that we needed to call someone, as I was beginning to think along the Heart Attack lines.

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K**h called the Ambulance Service and they arrived within about 15 minutes. The Paramedic and his partner were amazing. He asked a lot of questions and then wired me up to his portable ECG machine. He explained that he would do three scans to check the readings were all correct. After a quick study of the print-outs, he declared that he was convinced that I was suffering from Atrial Fibrillation and his partner quickly agreed.

Then the scary bit came, when he said, “Right let’s get off to the hospital!” Neither I or K**h knew what to say. It certainly wasn’t what I expected to hear. I’m not sure what I expected, maybe a tablet to put under my tongue (not sure what that does, but I had heard of that) and advice to see a GP. But the hospital was not on my radar at all. We asked what I should take and he joked that all I needed was a phone and a good book.

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The next thing I knew, I was strapped to a trolley and we were hurtling along the roads to Harrogate. With blue lights flashing, as the paramedic wanted to get me there quickly, we soon arrived at the A & E of Harrogate district hospital. Things moved quite quickly. After the usual blood taking and a chest X-ray, I was found a bed in a Critical Care ward. All in all, about 45 minutes.

I was hooked up to a full ECG monitor and was placed on oxygen as my saturation levels were low. Well, sleep was out of the question! The ECG machine was constantly beeping as my heart rate changed and if you have ever had the cause to use a Nasal Cannula then you will know how uncomfortable they can be when lying on your side, trying to sleep.

I was in my own room, and there was nobody to talk to. The door was kept closed as there was a patient with dementia, that was trying to go home and would go into the rooms if the door was open. I had a full day and night of this before a doctor decided that I should be on a Cardiology and not Critical Care. I was moved to another ward at 8pm. This time it was a five bedded ward, with four other patients. Although they were all around my age, they were all local people talking about local issues. Not as boring as before, but I had nothing in common with any of them.

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I now had a portable monitor which was linked by wifi to somewhere. This meant I was mobile and didn’t have to unplug anything to go to the toilet. I was still on oxygen though. Monday night passed without any issues and I found that I had slept for about six hours.

Tuesday was as boring as the other two days. For some reason, televisions are not on any of the wards. Something to do with the licence fee which I didn’t understand. So the only entertainment we had was a small radio playing music from a local radio station.

Later in the afternoon, a different Cardiologist saw me and explained that the increase in one of my medications had regulated my heart rate enough for me to go home. Hopefully that day. However, my blood oxygen levels were not good enough and I was to stay another night.

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Wednesday morning came and the nurse that was taking my blood pressure and oxygen levels told me to take really deep breaths when the oxygen was checked as that increased the levels. She also told me that I should regularly take a couple of deep breaths throughout the day as a matter of course.

The Cardiologist came again and explained that all the signs were good and that I could go home that day. This was around 10am. I now had to wait for my new medications. The Pharmacist turned up at around 1pm and took some details about the medication I had at home. She explained that she would put the prescription in and that as soon as it was ready, I could go.

I called K**h and explained that I was waiting for my meds and I would call her again when I had them. It was 4:30pm before the Dispensary called the ward to say my stuff was ready. It annoyed me that with all the bed shortages around, I was taking up a bed, whilst waiting for someone to fulfil my prescription.

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It was getting on for 6pm when we finally got home, and I have never been so happy to see the house again. It had been a scary episode and has given me cause to ponder on life, work and things.

Not been in the mood . . .

/ Tony / 1 Comment

I’ve had a cold since around the 16th of the month. I started with a bit of a sniffle on the previous Wednesday and I did a few Lateral Flow Tests (LFT’s) on the basis that the new Omicron variation had cold-like symptoms. All showed negative thankfully, but by the afternoon of the 17th (Monday), my cold was in full flow. So bad that I decided to ring in sick on Tuesday, which was probably the best idea. I spent the whole day in bed, sleeping which was very unusual for me.

By Saturday, I was beginning to feel much better and was almost looking forward to returning to work on the following Monday. I duly went back, but by Tuesday afternoon, I was beginning to feel bad again. More LFT’s followed, but again all were negative and I had to give in to the fact that either my initial cold had not gone, or that I had a new version. It’s just coming to the end now, ready for work tomorrow. Oh, joy!

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Wednesday is not going to be a good day. The trust that funds R***’s placement has decided that they don’t it to be fully funded by them. It has been for the past 10 years, but they now think that the funding should be shared between them and the Local Authority. I find it very wrong, that people make decisions about people, without even really knowing them. But apart from him getting older and becoming more tolerant, he still has the same diagnosis. He has not been ‘cured’ of Autism or ADHD. His medication has been reduced, but that is down to the team he works with.

So on Wednesday, we are having a Zoom meeting with the Social Worker that has been allocated to him. It’s going to be very stressful, especially as he’s been in lock-down since he went back to his residential place at the end of December. Hopefully, he can get home for the weekend, but much depends on how the virus spreads over this next week.

Fingers crossed . . .

/ Tony / 2 Comments

© Nottingham Post

Well the youngest went off this morning. His lead care worker and another care worker picked him around half past ten. We hadn’t told him where he was going, only that his flat wasn’t finished (he knew it was being decorated) and he was going on an ‘adventure’. K*** told him last night, and we were on tenterhooks regarding his reaction. This was another change to the plan. People on the Autistic Spectrum often don’t react favourably to changes to a routine. But it surprised us both. He just looked up from his laptop with a bit of a confused look, smiled and carried on searching You Tube for his favourite videos. I went up later and asked if he was excited about his ‘adventure’ and he said he was. We now just have to wait and see how the two carers go with it. I’m not sure if it is his medication or the care staff, or a combination of both that means things can change without too much upset. A year ago, any slight change would often result in an autistic meltdown, but these days, he just appears to accept things better.

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New phone arrived today. It’s the same make, just a later model. The price on eBay was £142.99, but for some bizarre reason there was a discount of £28.60 on the deal, but I had to buy that day. It was the phone I wanted, so I went for it. I was just about to go through my Cashback site for another 1% off when K*** explained that if I went through her Cashback site, I could get another 10% off. After a bit of ‘umming and ‘arring I bit the bullet and bought the phone. It now looks as if the phone will cost me £102.99. Not a bad saving!

And it goes on …

/ Tony / 1 Comment

The 2nd day back at work was really busy. One of my colleagues, who lives just around the corner had gone sick. Not the virus, but I think it may have been stress related. So the effect of that meant that the boss was working. It can be quite difficult when she is in, as she will not say no to a customer. For example, the chef was due to finish at 15:00 (he’d been there since 07:00). Five minutes before he took off his apron, she asked if he could do an ‘afternoon tea’ for 2 people. She explained that they had been in since 12:30 and had bought many drinks. The lady of the party was Canadian and had never had a proper English afternoon tea. The chef looked a little annoyed, but he agreed. So it was 15:30 when he finished eventually. Now the deputy manager would have said no! She would have explained it takes a bit of time to prepare and that they had some customers waiting to come in. Which was true. We seem to be getting the same or more numbers in with only half the tables.

They have a young lad, still at school who does the washing up on Saturdays and he is covering my Monday shift. Because I can be furloughed, it seems that they can give him a couple of extra shifts, until he goes back to school in September. Seems a bit cheeky to me, but I’m not losing out and he gets a bit extra pocket money. How legal or even moral it is I don’t know, but it’s not an issue I feel I need to raise.

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Youngest was home on Friday. He now comes home every 2nd weekend as opposed to every weekend. He seemed very content. It has taken a long time to get to this stage and he coped really well with being in lock-down, and not coming home for 4 months. We wouldn’t have thought it possible a year ago. His medication helps. It seems to relax him. The only downside is that he put on a lot of weight. We were asked to monitor his weight back in October last year as there were concerns that his weight was dropping. But some of the medication he was on, is not appropriate for his age and this is being reduced and replaced with a better solution. This where the problem lay. The old medication had a side effect that suppressed hunger a little. With this gone he began to increase his weight going from 9 stone in October to nearly 12 stone today. It seems to have stabilised now, but it means that most of his clothes no longer fit.

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I’m going to have to go sick tomorrow. I’ve somehow got an infection on my left leg which I need some antibiotics for and I’m having a problem with my right knee. It started on Friday night, with my knee feeling just a little tender. By this morning, it’s got to the stage where I need a stick to get around. There is an art to correctly using a stick to help with walking, and I’m finding how difficult that art can be, but I think I’m getting there. Just texted the boss to explain that I will not be in tomorrow. Not sure how well that will go down, but I can’t be bending up and down with a walking stick. We shall see what happens.

All over …

/ Tony / Leave a comment

Well … almost “All Over”. I’ve just got to get through binnedthe copious amounts of “Happy New Year” messages and we’re done until next September/October when the whole farce starts again. I think I’ve said enough about me and Christmas over the years, so I’m drawing a line under it (see below) except to say that it is only 363 days until Christmas day (again)!

So what’s in the future? Well tomorrow I have my Medication Review, whereby the doctor ‘reviews’ my current medication, and advises accordingly. Now, as I could be seriously compromised if four out of the five were ever stopped, it seems a little bit of a waste of time to actually review them. But review them he must, so that’s happening as 09:20 tomorrow. I suppose it will give me a chance to query the changes that are being made to the way my blood is tested. With being on Warfarin, I have to have regular tests to ensure the level of the medication is correct. At my end it is a simple extraction of a few millilitres of blood which is sent off to the Anticoagulation clinic in York. Two days later I get the result. At the last test, the phlebotomist mentioned that she did not know what would be happening in the future with blood tests and here words of comfort were “No-one knows what will happen in the New Year!” The health-care assistant hinted that it may be an all day clinic, once  fortnight or so, but she really was clutching at straws. However maybe, one of the senior practitioners will know a little more.

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Back on track … hopefully

/ Tony / Leave a comment

My INR results came back today, and it had gone down to 2.7, which is around about the target date. The anti-coagulation clinic still wants me to be checked in a week, but strangely they have requested that I be tested on Wednesday instead of the more usual Tuesday. It’s not a problem changing the date, as Tuesday has always had issues with work. Only thing that concerns me is that is now the middle of the week, which could have implications when we have time away. However, we shall cross that bridge when we come to it.

Tomorrow sees me paying a visit to the Cardio-Respiratory unit for an ECG. I’ve not had one of these since before I had my operation, and I’m more bothered by how I can get parked than what the results will be. This is a pre-cursor for the appointment with the doctor (or Consultant as I like to think of him) next week. I’ve not seen Dr Me****y since before the procedure back in March 2014. I would have thought I would have seen him before this, but I think there has been some mix up with my post-care appointments over the past two years. It will be good to see him again

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From his ‘homebook’, R**s seems to have had a reasonable day. There had been a couple of issues at the beginning of the day, due to a delay in getting in to the unit, but they say it improved during the day. It was a little unusual, but he was apparently wearing his ‘weighted blanket’ in the taxi home. He came out of the taxi in a happy mood and seemed okay. Around about 7ish, K**h took him his usual meal and he seemed to snap, which we were not really expecting. The usual nipping occurred and it required a dose of his PRN medication. He calmed down after about 15 minutes, but one of the after effects is to reduce his hunger. So not much dinner tonight.

He is full of cold, and I think that has had an effect, but he seems a bit more settled now.

A little bit of a rant

/ Tony / 2 Comments

Saturday was ‘Medication Review’ day. This in my opinion, is a bit of a waste of time. I’m currently on three types of medication: an anti-acid for my stomach reflux, an anti-coagulant for my heart valve and a beta-blocker to help my heart. Now the doctor has told me, and I have no reason to disbelieve him, that these are lifelong medications and it is something I accepted when they were prescribed. So why, every twelve months or so do I need to have a medication review? I suppose it is good that I get to see my doctor and he can see that I’m doing okay, but if a medication is lifelong…

My doctors’ surgery is in Tadcaster and many people will be aware of the events of Boxing Day 2015, when the ancient bridge was damaged in the flood. This is the only bridge in the town over the Tadcaster bridgeriver Wharfe and it has literally cut the place in two. It is going to be rebuilt but is estimated to take at least 12 months to complete.

We live, in a nearby village which is on one side of the river, and the doctors’ surgery is on the opposite side. So at the moment, what used to be a 9 mile round trip is now 17 miles , and what used to be at maximum a 26 minute round journey, is now a 42 minute one. It is worse some many of the inhabitants. I know of one person that lives very very close to the bridge that works very close to the other side of the bridge. What used to be a 3 minute walk across the bridge now is now a 20 minute bus journey.

On a more positive note, work has commenced on building a, what I understand is a temporary footbridge close to the main bridge. This will go a long way to reuniting the two halves of the town.

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I’m still struggling to find the best posting method for me. This post is being written in Word and I then intend to ‘copy & paste’ it into the WordPress desktop app. I like the desktop app, but would like it better if it had a spell checker. That was one of the better features of the old online editor which seems to be missing from the ‘newer’ online editor that WordPress tries to get me to adopt.

I suppose, at the end of the day, the best posting method is the one that suits the poster best. I still like the Word 2013 Blog Post template, but then again I really liked the Windows Live Essential Writer program (anyone remember when ‘apps’ used to be programmes?). The best thing that WordPress can do next, is to update the new editor to include some proofing tools. So if anyone at WordPress reads this … please

And so the end of the first week…..

/ Tony / Leave a comment

Well here we are, six days in and I really don’t feel any different. It seems that is will make a difference being this age as things might start to get a little cheaper. More on that later.

The ‘big day’ went as well as I could have hoped. I did not want any big celebrations or fuss that I think people might have wanted to plan, so it was a quiet day. I had changed my Facebook profile to not display my birthday, to see if anyone actually remembered. Guess what? Nobody did remember. It has come to something, when people, including some family members need a social media site to remind them of birthdays and the like! What was a surprise was, when I was searching for something on Google, I hovered over the graphic on the Google web site, and saw that Google sent me birthday wishes. Was a bit of a shock, before I realised that Google does actually know my birth date.

Lots of presents and a few cards, and a nice day out with K***s parents at Harlow Carr gardens. Then lunch at The Black Swan in Burn Bridge, near Harrogate.

One of the ways that being 60 has got a little cheaper is my prescriptions are now free. After my operation, I realised that it would be cheaper if I got a prepayment prescription certificate (or PPC). This drastically reduced the charges by over half. But, it seems that when you get to 60, the charges stop and all my medication is now free. The pharmacist, told me to reclaim the balance, and it looks like I may get somewhere in the region of £25.00 back.

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On Wednesday we set off for a couple of days break at The Black Swan (different one from before) in Fearby, just outside Masham. We got there in good time and decided that we do the Black Sheep Brewery tour. It was a very interesting couple of hours, and if you are in the area, I suggest you give it a go. You will not be disappointed. Especially with the beer sampling you get at the end of the tour! Now this was another way that being 60 was a little cheaper. The tour cost is £8.50 per person, which includes 3 x 1/3 of a pint of beer as your sampling. However, and I never spotted this, if you are a ‘senior’ aged 60 or over, you get in for £6.99 and still get the beer at the end. It seems that there are a lot of places that do this kind of reduction for people over 60, and I’ll need to look out for them. One thing that bothered me a little, was that no proof of age was required ……. Maybe my little joke about being as old as I look was not such a joke after all!

We arrived at our place of stay, at around 4pm, booked in and then went for a short walk round the village. It seems that The Black Swan is the only pub in the village. It worried me a little, that it might be a bit noisy later on in the night, but it turned out not to be the case.

The restaurant/breakfast room/bar had an unusual collection. The whole of the roof was covered with chamber pots. Must have been over 200 hanging from the ceiling. It made for an interesting if somewhat bizarre display. Mind you, saying that the landlord seemed to drive everywhere in an old U.S. army jeep, so I suppose each to his own.

Thursday was the day we were to do what is known as “The Druids Temple Walk”. Now this is not as dramatic is it sounds. The Druids Temple is actually a folly built in about 1820, by the owner of the Swinton Estate, as a means of employment for local people. It is stated that it is a 5 mile circular walk, although to me it seemed to feel more like 8 miles! But it was worth it when we got there.

We had a quick visit to Thirsk on Friday on the way home. Nothing special there for me, I’m afraid, but K*** seemed to like the place. K*** likes to make our breaks last as long as possible. Me, on the other hand prefer to get home as soon as possible on the last day.

All in all, it was a good couple of days away. The weather could not have been better and the scenery was just perfect.

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Monday will be interesting I think. The team I work with now, seem to like to ‘celebrate’ people’s birthday milestones, and they seem to know when everyone’s birthday is. Thing is, that I’m not in my main office tomorrow, so I’m not sure how things will pan out or what might happen when I go to the main office on Tuesday. I think I need to get some sweet stuff to take in on the Tuesday, but I shall just have to play it by ear. Before the last workplace review, the team I was in just did not do anything for birthdays. They didn’t even send each other Christmas cards, which always seemed unusual. I did get a ‘Get Well soon’ card after my operation, but it was given to me about 2 weeks before I returned to work, so I felt a little bit cheated.

 

 

Struggling for a title …..

/ Tony / Leave a comment

The title of this post actually says quite a bit. My postings are just about me and mine. There is nothing of any importance here … no themes … no political agenda … just general rants. So often when I come to add a post title, I do struggle.

Well it’s the Bank Holiday, and of course the weather is up to its usual tricks. One minute it’s dry and sunny, next minute it’s pouring with rain. We have the Leeds Festival here this weekend and if it is anything like the 2nd year I went, it will be a mud bath again! Still 99% of the fans that go have a great time. With living local to Bramham Park we are entitled to apply for a limited number what they call “Guest” tickets at a discounted rate. I’m thinking that me and K*** may apply for next year if we can get R*** on respite that weekend. Not too sure if K*** will enjoy it much, but who knows?

The Out-Patients appointment was less than interesting. I don’t really know what I expected …. maybe a chest X-ray, an EEG, an ECG, blood pressure check, weight check and maybe even a blood test! It was nothing like that at all! For a start, two of the registrars were on holiday so that left only one to take the clinic. That of course meant delays all round of about 1 ½ hours. Finally got in to see him and the conversation went along these lines:

Him: “Hello, how do you feel?”

Me: “Okay, really good. Better than before.”

Him: “Good.”

Me: “I am getting a bit of backache around my shoulders.”

Him: “That is normal. Anything you would like to ask me?”

Me: “Erm ….. can I drive now?”

Him: “Yes, but you need to tell your insurance company.”

Me: “The white stockings, can they come off now?”

Him: “Yes of course.”

He then listened to my heart and told me that the sound was good and asked if there was anything else we needed to know. Neither of us could think of anything and we came away feeling rather deflated and disappointed with the whole meeting. Apart from using the stethoscope, there was no other ‘medical’ things done. To both of us, it seemed a waste of both our time and the hospital time/resources. It could have easily been done at the GP’s surgery. I’m supposed to have a 2nd appointment in about 6 months time and then a further one a year later. Based on this last one, I don’t really see the point. I have to see my GP sometime this month as one of my medications needs a review, so I might mention this to him and see what he has to say about it.

I emailed to car insurance company yesterday morning. Nothing has come back yet, so I will telephone them on Monday morning and find out what is happening. K*** rang her insurers (I’m a named driver) and they did not seem to take any notice at all, so it may be the same with my insurers.

* * * Update * * * Received the following email from the insurance company:

Thank you for your email.

This is to confirm that there are no driving restrictions on your policy. Providing you have not been told not to drive by your Doctor or GP and you feel fit and well enough to drive.

Back to sort of normal ….

/ Tony / Leave a comment

For the past few posts, I have been concentrating on my “Life changer” thread. That thread is now being wound down and I’ll continue with my normal postings.

So where are we now? Well because of the operation, I’m currently on sick leave whilst I build up my strength again. As I mentioned before, I should be off work for about 3 months or so. Given the job I do, it may be a little shorter than that, I don’t know yet and I’m not going to push for an early return to work! It’s been 4 weeks to the date, since I had my operation and apart from a response to an email I sent, nobody from my team has been in touch at all! I’m not surprised by that, but more than a little disappointed that I’ve not even had a ‘Get Well soon’ card. I did not expect anything from my previous team, but I thought there may be something from the new team.

I have for many years (at least 40 if I’m counting) had a small health insurance plan that I pay into for K*** and me. This plan pays for dental and optician treatment and also pays a daily fixed amount for hospital inpatients. I have claimed for K*** before, but this was the first time for myself. It’s not a massive amount considering what has been paid in, but it’s a nice little some as bonus.

So with some of the money, I bought myself a new camera. I have wanted an SLR (Single Lens Reflex) type camera for a long time, but I did not want one of those huge things that need multiple lenses, that I used to have before. So I settled on what they call a ‘Bridge Camera‘, a camera that is between an ‘SLR’ and a ‘Point-and-Shoot’. It appears to work very well, but I need to get some kind of bag, and possibly a better neck strap. A trip to Amazon or eBay is required now.

One of the downsides to having this new valve (or maybe an upside depending on your point of view) is that I am now limited on the amount of alcohol I can take. I’m supposed to stop all together or have a maximum of 3 units per day. Very slightly went over that limit yesterday, and I’ll explain why. You may recall, that our youngest son is Autistic. One of his obsessions is to have the VHS video player playing a video all night long. We think that it might be some kind of ‘security blanket’ for him, and to be honest, we have now got used to it. Last night there was a problem! One of the tapes he has been watching seemed to get jammed. I thought that the tape had stretched and that the player could not read it. Now for most people/kids that would not be a big problem, but for R*** it was a major disaster. As usual, this caused him a great deal of stress and this started to come out as violence. That is when the limit was breached! It was only a very small whiskey, but still it was a breach of the limits I was working to.

We gave the medication he has, to calm him down and he seemed to accept that I would sort out the problem the next day. However, the medication had the effect of giving him a new lease of life and he was up and down until around 3am. This meant that both K*** and me only really dozed during that time. I tried the tape in another machine and it seemed to work okay, so I’m thinking that it may be the machine that is at fault rather than the tape. So I have now managed to swap out his VHS machine for the one we had downstairs. We never really watch VHS videos anymore, so it will not be too much of a problem.

Fingers crossed for a better night tonight.

Life changer – Discharge Day

/ Tony / Leave a comment

So now we come to the day that nearly spoiled the entire experience.

I had been awake since 6am and my bags were packed and I had geared myself up for leaving the hospital. I felt that it could be a bit of an emotional day and was beginning to prepare for it. I had packed my bags the night before, and there was only my washing stuff still on my locker. Breakfast came at about 10 past 8, and I had decided to have cornflakes followed by a cup of coffee and 2 slices of toast. I had just finished the cereal, when I was told that I had to move to the other ward and make the bed free for someone coming up from ICU. Now, I remember the day I came up from ICU, so the idea that I should make way for someone else was not an issue. The issue was that I had to go there and then!! Halfway through my breakfast!! It could not wait for another ½ hour, I was to go then. I said a quick goodbye to the guy that I had spoken to the most and I was packed off to the other ward. I had an idea, that that ward got their breakfast first, so in a moment of defiance, I grabbed two slices of toast and took them with me, must to the amusement of the duty nurse.

I was dumped (not true strong a word) into a side ward, and had to wait until the cleaner had finished before I could have a wash and get dressed. The senior nurse came in and told me that I would be discharged at 10 am, and I had to explain to that K*** was coming to pick me up at 2pm. This, I was assured was not a problem and that I could stay there until then. Where else I was going to go, I do not know!! I was given a cup of coffee at around ½ past 10, and apart from the nurse going over the same details, the only other people to see me was another doctor. Lunchtime came and I was given, not what I had ordered but once again what had been left. I had just finished my dessert, when I was told, that I had to vacate the side room and was ‘allowed’ to sit on one the chairs in the reception area. I was not happy by this time, and I tried to explain to the nurse, that when my wife came at 2, we would need to be away by ½ past three at the latest in order to get home for R***. Once again, I was assured that this was not a problem. He also said he had the medication that I had arrived with.

From there on in, I felt like nobody cared anymore! There was another older man, who had been there since 10am and he was really angry, and his anger was beginning to get me angrier. Again I checked that they had the medication that I had come in with, and the assurances were there again. I was told they were just waiting for my prescription to get to pharmacy, they I could go. K*** arrived at 2pm and again explained to the nurse the issues that we had, and the reply came back that it would be all okay.

In the end, pharmacy came up with the medication at around 10 past 4. We went through the medication (which I already knew, because the nurse the evening before had gone over it all) and I asked for the medication I came in with. It was then that the nurse decided that he would go and look for them. K*** went off to get the car to the pick-up point whilst I waited. He eventually came back and sheepishly explained my stuff could not be found. Now I knew that it had been moved to the ward I had recovered from as the nurse the night before had shown me them. By this time, I had had enough and left. K*** was now as angry as I had been before. It was a good job that S**** had said he would be at home for when R*** came home or that would have been a serious problem. All in all, a pretty crap end to what had been a very successful week.

The feedback survey was interesting to complete!!!

Life changer – “Day 2 + “

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After a surprisingly quiet and reasonably comfortable night (which I can only put down to the morphine) I woke about 6:30. This became the norm for me, to wake at around the time I would have done had I been at home. Breakfast arrived at just after 08:00 and was asked if I wanted cornflakes or toast. Now was a bit of a dilemma. When I was getting ready for the operation, I was told to remove my dentures and put them in the pot that I had brought. To my knowledge, those dentures were still in that pot, in my toilet bag, in the locker on the ward I had come from. That meant that toast was out and I settled for cornflakes. I have to say, that eating cornflakes without teeth is not to be recommended.

I was given a bed wash, which was an experience to cherish and then introduced to the physio-therapist. She went through some basic breathing exercises and explained that I needed to cough. She also explained the importance of the cough. Whilst following the logic, I had real difficulty in putting it into practice.

This day 2, was the day when everything changed. I was going back to the main ward! This entailed removing some the pipework that was still in me. A line was removed from my neck and then came the bit I had been warned about. The removal of the chest drains. I only reference I have for chest drains are the medical soaps on television. These programs never show drains being remove. You cannot begin to imagine the feeling when 18in of plastic tubing and another 8in of similar plastic tube is quite literally dragged out of your body. The nurse had told me that I would feel a lot better with them out. I didn’t!!

Within an hour, I was on the main ward and reunited with my teeth. K*** and her sister came to visit, which was nice, and both remarked on how well I looked. So I suppose the drain removal must have worked. Dinner was a bit hit and miss, but I did manage to eat a little bit more.

From then onwards, I began to get stronger and more confident as the days went by. Everyone was impressed with my progress and it soon became apparent that it would not be long before I could go home. That date came on the 2nd July, just seven days after being admitted!

I cannot express fully how remarkable the teams that were on the ward were. Not just the doctors and nurses, but the assistants, catering staff and cleaners. Everyone seemed to go out of their way to make all of us feel as comfortable and individual as possible. That old song that says “…..Heaven must be missing and angel…..” is not right. It should be “…..Heaven must be missing thousands of angels!!!” because a large number were on that ward.

Now, discharge day was something else, and I shall leave that tale for the next post

Life changer + 114

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You know how I said that “assessment went as well as I could have expected”, well I may have been a bit premature with that statement. On Tuesday, K*** took a call from the hospital to say that there was a problem with some of the tests. I needed to get some ‘body-wash’ and some nasal stuff, and had to go back to the hospital, in a weeks time for a repeat of the test. Another £16.10 in prescription charges (more on this subject later) and I find out that I have MSSA. Now this is not the same as MRSA, but still not a nice thing to find out. From what I understand, it is basically a bacterium that is found in/on 40% of people, and is only a problem for open wounds. Hence the bit of a flap with the hospital. So now, I have to shower every day for 5 days with an anti-bacterial body wash, and also use a nasal cream, 4 times a day for 10 days. Today was the first day of this ‘treatment’ and I have to say, the nasal cream is not wonderful. The body wash is okay, I can live with that, but without going into any gory details, the nasal cream is, shall we say uncomfortable.

For years, I have moaned about the high cost of prescription charges. Well today that moan is a lot less than it was. I joined a Facebook support group for heart valve repair/replacement just out of interest. Of course, as I expected there are a lot of Americans posting on this site. What has amazed me is the both the cost of their hospital fees and the research they are forced to go into to find the best care. Here in the UK, I was told the hospital I was to be treated in, and when it was to happen. None of this £XXXXX for the operation, £XXXX for the per op care, £XXXX for the post op care etc etc. Thank whoever we have the NHS, and long may it be there. There was a young man who was paying $3400.00 just for the operation. That did not include the care before and after, that came to over $5600.00 and it seems that his workplace was not keeping his job open whilst he recovered. I’m starting to get a little political now, and this is not thread to have this type of rant in, but it does make you think!!

I shall leave it there, as I need to do the last cream application of the day.

Welcome to another year

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     Well 2013 arrived, and the expected, and dreaded firework trauma did not happen. We had given R***  1mg of his PRN medication at around 23:15, as a precaution. But we had none of the usual ‘incidents’ that we have had over that past four or five years. To be honest, there was not as many fireworks going off around here, as we normally get. In fact, there were more on Christmas Day than last night. So the question is: why was he better last night than before? The “psych’s” will tell us that it was the drugs that settled him and they will try and use it to give credence to solutions. I rather think, that it was just the lack of the fireworks that did it. Whatever it was, it was 1000% better than previous years.

     I find it rather disturbing, that for a country that is in such a dire financial situation, we still have money to waste on the New Year Celebrations. The London fireworks lasted for 15 minutes. How much must that have cost ? There would be the actual cost of the fireworks (22,000 in total). Then the cost of the organisation and planning. Where did all this money come from ? And the scenes were repeated, albeit on a smaller scale, throughout the country. If we are a country with such a large deficit that we are cutting welfare payments to the most needy, do we really need to ‘burn’ so much money just because the number of the year changed ?

Bloody fireworks

/ Tony / 2 Comments

      One of R***’s problems is noise sensitivity. I understand it occurs with many Autistic people. It is not the volume of the noise, more the pitch or tone. He can have his video and computer at the highest volume level and not bother at all, but there are some types of noise that causes him distress. Fireworks are an issue. We think it is the sudden randomness of the noise, rather than the noise itself, but it is a problem for him. This then in turn becomes a big problem for us. You see his frustration turns into anger which turns into aggression. This aggression usually manifests in nipping, biting and what we call ‘chinning’ whereby he will grab an arm/leg/neck and press down with his chin onto that part of your body. When he gets it right, and he invariably does get it right, it can be extremely painful. Then it is time for the medication. To be honest though, he has coped very well with the past few days. The medication did its job.

      What I get annoyed about, at this time of the year, and especially this year, is that people ‘extend’ Bonfire Night, beyond the 5th of November. I heard on the TV someone mention, that it is ‘Bonfire Weekend’ !! I also heard, on the radio young kids talk about it being ‘Firework Night’. When they were asked, why we celebrated, they did not have a clue. At the end of the day, what are we celebrating ?? We celebrate an historic event, whereby a group of people, did not agree with the Government of the day. That group of people decided to blow up the Houses of Parliament, in order to progress their cause. Today, we call that Terrorism !!!

The days get longer …..

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It has been an stressful if not interesting week. R***’s medical team have decided that they need to reduce the dosage of one of his medications. To be specific, Lorazepam. He has been taking half a milligram every morning, Monday to Friday, with a full one milligram if needed (PRN). This has been working fine. However it’s been decided to try and get him off the drug completely, as it is supposed to be highly addictive. The issue here is, what will replace it, and what effect will that have on R***. We saw the effects of medication change some years ago, when a doctor decided that he would be better taking a form of Risperdone, which is an anti-psychotic drug. This caused severe problems at the time, and was stopped. I fear that the same thing may happen again. Not with the same drug, but something similar. We are going to tell his medics that we feel he should stay on the half milligram dosage, with the one milligram PRN for the time being, then gradually reduce the dosage, over a number of weeks. I will let you know how we get one, with that one.

I think I may have tempted fate, last posting with regard to Mrs H’s next project. Her hand has been forced somewhat. On Tuesday evening, I had given R*** a shower and decided that I needed one too. Now whether the shock of this was too much for the shower to bear, I couldn’t say, but the shower broke. What actually happened, I have no idea, but the controller made a cracking noise as I was turning it off, and then would not turn off. I eventually managed to get it turned off, but there were problems turning it back on. So a new shower is the order of the day. Mrs H went out and bought one yesterday, and the guy that did the kitchen said he would fit it. We just have to wait until he can, but Mrs H is already thinking we need a pump for the shower also. The one we have is gravity fed, so not much of a power shower. Apparently, a pump would improve this. Expensive days ahead, I think, as she also wants the whole of the en-suite replacing.

It’s been a while

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I’m struggling to find anything to write about really. Work plods on as usual, with very little change. There are a couple of courses coming up, but nobody seems to be that excited about it. There are quite a lot of changes going on with some of the other teams. That is causing a lot of stress for some people. doesn’t really affect me directly, but it’s not a nice atmosphere at the moment. But, I went through it, and at least their managers won’t be blaming them for the changes, as happened in my case.

We have had a bit of a stressful time with R*** over the past few weeks. He seemed to have settled into his new placement, or college if you like, but there have been issues. There is a young man that R*** knows from his school, and R*** does not get on with him. We do not know why, but it seems to cause R*** a great deal of stress. We have spoken with the people at his college, and they say they understand, and are going to keep the two apart as far as possible, which may help. The transport has changed, because R*** grabbed the escort and bruised her. That caused more stress for my wife than for R***. Hopefully that is sorted now. To cap it all, his medical team, have decided to change some of his medication. Apparently, he can build up a tolerance to some of the drugs. That makes them less effective, so the dosage would have to increase, which is never good.

It is his birthday coming up soon. We never know what to get him, but his current obsession, is with Pingu. He has searched through Amazon and eBay, and found a Pingu toy that he wanted. This was the first time I had bid on anything (usually just buy the things) but it was the only option. The bid started at £3.99 plus £5.00 postage, which was not too bad. I ended up winning the bid, but it has cost me £30.00 all together. But if it is something he wants it will be worth it. I just hope he is not disappointed when it arrives. I know it is second-hand and there may be some damage, but fingers crossed.

We (or should I say K***, my wife) is having some work done at home. We have an fridge and freezer that sits under the work surface. Over past few years, the seal on the fridge has deteriorated, meaning that sometimes the fridge door is left slightly ajar. K*** has decided that she wants one of those American style fridge/freezers instead. So, that is what we are having installed. The usual handyman is going to remove the old one, build a new cupboard, where the freezer was and dismantle the tall store cupboard/pantry. That is when he finishes replacing the tiles. It will look good, but the house is in such a mess while the work is being done.

New job gets closer ….

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It has been a funny week or three. Funny as in odd/strange not as in humour. R*** has been better since resorting back to the old medication. We still seem to be living on an knife edge at times, but he seems to be having a lot more good times than bad. We also have just found out that he has got his funding for the college we want him to go to. Not sure how long the funding will continue for, but it’s a start. Just now need to sort out the transport costs, and we can put that one to bed for a while.

Mrs H found out that the mole she had removed, was a Melanoma !! I think she kind of knew it really. So that’s not been a good time for any of us. She is having a scan next week, to see if it has travelled to her lymph nodes. Fingers crossed that it hasn’t, then it would only mean a minor operation in day surgery.

Now to the new job !! It has finally sunk in to those who are supposed to be in charge. My job has gone, and I am now going to be doing something else. I think will still be supporting the systems, but I will be moving office. A certain person (and those who know me from work, will know who I mean) has finally realised that I’m going, and he’s none too pleased about it. A few words were said last week, that led me to realise the this person does not care about what has happened to me, and is only thinking of himself. One of his comments, really hit home and got me very angry. So angry, that I accused him of having no respect for me at all. I did not get any indication from him that I was mistaken. He basically accused me of ‘walking away from the job’… That I was going to leave my colleagues in the lurch. The fact that I have been writing out instructions for the jobs I do did not seem to click. He meant that I somehow had some control over the procedure that had been taking place for the past eight months, and that I should have done something to stop it. I mean, what have they been doing since August to prepare for the eventuality, that I would not be doing the same job? Where is Plan ‘B’ ? come to think of it…where was Plan ‘A’ ? There was always the chance, that I would not get any of the jobs that were up for grabs. What would they have done then ? He has not spoken to me since.

Someone else asked me if I would miss the job? Their face was a picture when I said no, that I had had enough now. I think that they really were asking if I would miss them !! I’ve been in the job for 22 years. It’s going to be a big change, but i think I’m ready for it. anyway, I’ve no choice in the matter, so I’m going to give it all I have, and enjoy the challenge.

Awful afternoon

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I was about a hundred metres down the road, when I spotted the Police car behind me. A quick look at the speedo’ showed me I was under the limit. Just! So I drove the whole road at 58 miles per hour, with the police car 20 foot behind me. Now, will he turn into the village, or is he going straight on? Nope, he’s sticking with me. Should I go along the main road, or up the hill? Main road, I think? Bloody cop is still with me. He’ll be on to Clifford, I thought as I turned into my street. Oh dear, an ambulance. I wonder who has died now. Just a minute….. it’s just moved, then stopped outside our house. There’s a police car there too. What the fuck is going on? I parked and got out of the car. The police that had been behind me was now parked outside our house too!!!! What in God’s name…..

“Alright mate?” asked the police officer that had been behind me.

“Er…..yeah. Thanks. What er……”

I went inside, and the scene that greeted me was bizarre to say the least. S**** was sat on the floor, holding onto R***. K*** was trying to explain to the two paramedics, what R*** and his Autism was about. R*** was looking very pale and shaken, and sobbing a little. The two paramedics were trying to talk to R*** to see if he was okay, but getting no response as usual. The two police officers were stood around, looking genuinely concerned but clueless (not their fault, probably never dealt with someone like R*** before).

Apparently R*** had had an ‘episode’. Not the usual, type of ‘episode’. This time the medication did not work and he had completely lost it. Both K*** and S**** were concerned for theirs and R***’s safety, and that’s why the emergency services had been called. It must be standard if there is any kind of violence that the police attend, which is why the ambulance had parked up before our house first.

The paramedics were great. They asked what we wanted to do with R***. Did we want him to go to hospital or what. Well, I thought that if he went to hospital, the first thing they would do would be to get a psych doctor, and sedate him. That would not solve anything. The paramedics stuck with us, and were there a good hour, testing his blood pressure, SATS and everything. The police were being looked after by S****, doing his ‘coffee shop’ thing.

He calmed down, enough for them to leave, but he was still very hyperactive after they had gone. It is now 23:45, and he is still up. Quite calm, but it is like living on an knife edge. We just don’t know if he is settled or if we are going to have some more.

I have to say though, I felt that the paramedics did a brilliant job. What did get me though was the paperwork they had to fill in. That took over 20 minutes to do. C’mon, give them some technology!!! I mean, in this day and age, they still have to fill in paper forms. Dear Health Secretary, if those forms were electronic, and on a Tablet PC or an iPad, then maybe less time would be spent filling in  paper!!!!

Weekend over ???

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Yes it is over, and to be honest, I’m quite glad about it. It wasn’t the painting that was the problem, although that was stressful in itself, it was the problems with R. It must have been the new medication. Sunday was just as bad as Saturday. It just was not him, and he was so distressed. Mrs H rang his consultant on Monday morning, and explained just what he was like, and that we were very concerned. He did not settle down to sleep on Saturday, until gone half past one, and it was the same Sunday night. The consultant said that it was not a usual side effect, and to halve down the dosage, He was better last night, although still a bit agitated. He did settle to sleep earlier though. Mrs H says he was a ‘bit bouncy’ this morning, which usually means he was he was running up and down the room on his toes. If he is smiling or laughing, then we are fine. If he is holding his ears, then it indicates that he is getting upset,

I cannot help being a bit bemused at the comment “….not a usual side effect….”, He has never had that medication before, and ALL Autistic kids/people have different reactions to different things, how can anyone know what the side effects will be. Still, they appear to be listening to us.

First day

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     I’m currently off the booze! Well to be more accurate, with effect from today, until Saturday, I will not be having a drink in the house. I’m out on Wednesday night, for an hour, so will have a couple then, but for the rest of the time, it’s carbonated water and tea.

     I probably do drink far too much. When you listen to what the ‘experts’ tell me is a safe limit, then the word probably should be replaced definitely. I tend to have a can of beer when I get in from work, a glass of whiskey whilst making/waiting for dinner, wine with dinner then finish the evening off with a brandy or two.

     Stopping during the week will not bother me, as I have done it before. In fact, during my early twenties I contracted Yellow Jaundice, and stopped for a whole year, so it’s not an issue.

     Right, that’s the guilt trip out of the way. I found a real bargain today. We watched the Brit awards, last week, and I enjoyed Alfie Boethe Les Miserables part. I’ve been a fan of Alfie Boe since he first hit the big  time, back in 2006. Well Mrs H told me that she liked him too, which was a bit of a surprise, seeing as she did not know I had got an album by him. Anyway, his new album was advertised, at ASDA for £9.97. Aha I thought, it will be cheaper on the internet. Amazon had it for more or less the same price, but Play.com had if for about a pound cheaper. I’ll order that next week, I thought at the same time as ordering printer ink. Well, I went to get some salad stuff for tea (healthy eating as well as booze free), and spotted said album, at only £5.00 !! Bargain. Mrs H was well pleased, as I explained that it was a present for her !!!

    

     Youngest is in a good place at the moment. He is on a new medication, which seems to be having an effect. He seems to be a lot happier in himself. It is an antidepressant, which his consultant believes will help with the stress, he thinks might be the problem. I have to agree, he does seem to be very stressed when he has his violent episodes.

     Still issues with the dawn chorus though. It woke him up at around 3:30 this morning, but he settled down after about half an hour, which was good. Let’s see what tonight brings.

So where are we now

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     The Friday meeting went well apparently. Another medication !!!! However, this one appears to be having a desirable effect. What we did not want, is a drug that just ‘zonks’ him out (zonks .. is that a real word?) This one, although it is one of the ‘blahblahpram’ type seems to have a calming reaction. He appears to be happier in himself. A lot of the aggression, whilst still underlying, seems to be being suppressed. School is getting more response and work out of him. So everything is rosy !!!!! But we have been here before. We will wait and see !!!

     Work is exactly the same as usual. We heard a bit of a shock last week, that part of the department, was in negotiations with a private company to run the service. You would have thought, that news like that may have shaken the ‘team’ out of their complacency !! No. We still have a majority of the office that think that second rate is good enough. Will they ever learn ?? The ConDems have got the Public Sector bit between the teeth, and I don’t think they will let go until they finish what Thatcher started !!!

It’s only Tuesday …

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   Today was one of those strange days. I seemed to be doing a lot of work, but did not seem to have done much. Not a lot to show for the effort, if you know what I mean.

   Mrs H got the wallpaper for the downstairs today. £16.00 a roll !!!! I’m going have to make sure I don’t make any foolish mistakes. I remember once, doing a whole wall upside down. Not entirely my fault as one of the rolls had been rolled the wrong way. If I had not have used it first, I would have noticed.

   I think Leeds Utd may have blown their automatic promotion. Three league defeats in a row, and now Norwich has gone top. It will be difficult to pull back from there, and there are a couple of potential hard games coming up. I’m thinking Carlisle and Huddersfield.

   Youngest is still only on 1/3 of his medication. He was not very happy yesterday, and was still a bit off this morning. Seems happier tonight, but not like he has been over the past week. Must be something at school or on the bus.