100 days

At the start of my self-isolation, this landmark seemed a long way off – but yesterday was 100 days since I locked myself away! I think the official lockdown started 100 days tomorrow, but I’d not been out a few days before they made the announcement.

I remember thinking at the start that having to stay indoors until mid June felt like a prison sentence – and we’re now past that and we still have no idea when things might get back to normal! I know pubs and restaurants are allowed to open with restrictions from this weekend, but there’s no way I’d venture into one of them for the foreseeable future!

One thing that has taken a bit of a hit during this lockdown period has been my fitness. Obviously, with the whole heart-failure thing, I’ve been aware of how much more easily I get tired, and how my general fitness level has been pretty low, but I had eventually managed to get into a bit of a routine with going to the gym and building up my cardio fitness. But since lockdown, that’s all gone.

I’ve hardly been out of the house over the last 3 months (you can count the times on one hand!), and I’ve not really been able to get myself to do any decent exercise indoors. I know I could probably find somewhere pretty remote to go out for a decent walk whilst avoiding people, but the flip side of that is I’m worried that if I’m out somewhere and I have a problem caused by me heart, then there’s no-one around to help! I know it’s probably ridiculous, and it shouldn’t stop me, but it does stop me getting out there.

Flooring finally goes down in the living room!

Anyway, onto something a bit more positive – I finally got the flooring in the living room sorted! I original bought it all way back in January 2017, but it’s been sitting there ever since, and then finally a few weeks ago I got Craig to lay it all! It looks really nice, but I now need to find a decent carpenter to box in the utility meters and to build some floating shelves in the left alcove, but it does feel that I’m a lot closer to everything being finished!

Another thing I’ve been doing is sorting through old photos that were taken before I had a digital camera, and there are lots of them! I’ve also got tonnes of the original negatives that I need to sort out, and I really want to look at scanning them all so that I have high quality digital copies. I’ve been doing a bit of research of the best way to do it, so today I’ve ordered a negative film scanner which will let me scan them all – it looks like it’s out of stock everywhere at the moment (I assume others have had the same idea during lockdown!), but hopefully it won’t be too long before I get it!

Lockdown

So last night, the UK was finally put in lockdown, after quite a bit of uncertainty and confusion over the spread of the Covid-19 virus these last few weeks. I’ve not actually been out of my house since Friday – I did a supermarket trip then to make sure I have enough stuff in to get through the next few weeks.

I’ve found it a bit confusing as to what I’m supposed to do with regard to my health issues. I’ve seen in quite a lot of places that I’m in the high risk group, because the virus causes lots of issues with your lungs, and generally your cardio system, which isn’t ideal when you’re living with heart failure. What has been strange is that heart failure was showing up on the official government list last week when they were suggesting that those people would need to shield for 12 weeks, but now they seem to have slimmed that list down, focussing on what they class as ‘particularly high risk’.

I follow a couple of heart failure social media groups, and they’re recommending shielding for the 3 months if you’re able, because the risk is still high, and it comes down to how your body then fights it you get it. And whenever they talk about people who are dying from this, it’s often the case that they have ‘underlying health issues’ which when you examine what that means, heart problems seem to be part of that.

So I’ve decided to self-shield for as long as I can, even though I’ve not had any official instruction from the NHS (but I’m hearing that other people who expected to be part of the official group also haven’t been contacted, so I get the impression they’re trying to keep it to a minimum).

The thought of staying in my house for such a long time is pretty overwhelming – I mean, we’re looking at the middle of June at the earliest, and it’s only March now… that’s quite crazy. It’s really annoying too because the last few months, I’d finally got into gear to make my house more liveable (after the world’s longest ever DIY project), and had electricians and decorators in doing stuff the last few weeks, and I was about to get my wooden flooring and carpets fitted, which meant I could then sort out proper furniture like a sofa and a decent bed, but now everything’s shut down, I don’t know when I can get that sorted!

Latest health

Time for a bit of a health update. At my last meeting with my consultant back in December, we discussed me possibly needing an ICD (implantable cardioverter-defibrillator), which is kind of like a pacemaker, but monitors your heartbeat and gives you a shock if it ever stops. I totally understand the benefits of it, but the big downside is with regard to driving – you can’t drive for a month after surgery, and if it ever goes off, you then can’t drive for 6 months!

Anyway, the upshot was that I’d need to have another ECG to see whether my heart function has improved at all, and if it hadn’t increased significantly, then I’d need to have the ICD fitted. I had an ECG appointment at Stepping Hill hospital last month, and then I got the results of that last week.

When I was admitted into hospital last May, my LV systolic dysfunction EF (ejection fraction) was 32%, which is what’s classed as severe heart failure, and can lead to cardiac arrest and death. But since then, with the help of a lot of tablets that I have to take everyday, my EF percentage is now 45%, which means medically it’s now only mildly impaired. Of course, I’ll have to take my medication for the rest of my life.

I’m really hopeful that this I won’t have any more heart issues, although I do still get tired quite quickly – maybe this will improve as I get fitter. The only other thing is that last weekend I had a problem where I experienced incredibly painful gout in my right foot, and apparently that can be caused by an issue with your liver and kidneys, which can reflect problems with your heart, so I’ve got to have a blood test at the start of March just to check there’s not anything else. Once I’ve had the results from that, hopefully I can set my mind fully at rest.

Angiogram and comedy!

Changing into my disposable gown.

This week I’ve been in hospital again for an angiogram, following on from my MRI I had back in the summer. I had the procedure on Friday, and I was told that it was primarily to investigate my arteries, but that if they found that they might need to insert stents, then they had the option to potentially do that at the same time.

Anyway, I had to be at Wythenshawe hospital for 7.30am – my mum had come up to stay for a couple of days because I wasn’t allowed to drive, and also needed someone to be at home with me for 24 hours after the procedure. A group of us were taken to a ‘day room’ where I had to change into a disposable top which gave them access to stick sensors on my body for an ECG, and I had a cannula inserted in my arm, before signing a consent form for them to proceed if they find anything.

I was a bit apprehensive about having an angiogram – basically you’re given a local anaesthetic, so are awake as they insert a tube into your arm or leg, and move it up towards the heart to put a dye in there and then use an x-ray machine to see live images of the arteries. At this point, they then decide whether to the proceed with angioplasty there and then – this is where they try to open up the arteries and insert a stent, or whether I’d need to then go on a waiting just for a heart bypass operation.

Everyone kept telling me that an angiogram is classed as a pretty routine operation, but I was a bit nervous about it because my dad had the same procedure back in 1996 and the doctor messed it up, going through the wall of the main artery, causing internal bleeding. He was then rushed into surgery and ended up having a quadruple bypass – so that whole situation was at the back of my mind going into it!

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Heart failure

So I thought it was about time I did a bit of an update as to where I am a health-wise. It’s taken this long partly due to me trying to take it all in, and also waiting until I got some more information from tests and from my consultant.

I had an appointment this week which has given me a bit more info. It turns out they now think I’ve had a heart attack (acute myocardial infarction) at some point, but I wasn’t aware that it happened. Basically the blood supply to the heart was temporarily blocked when it happened, and this then caused scarring on the wall between the two chambers of my heart, and this has led to heart failure. Apparently it’s quite normal to have a heart attack but not realise it. You kind of think of a heart attack being some big dramatic event, like serious pains or collapsing, but I think I was mixing it up with a cardiac arrest, which is what often leads to death if not dealt with immediately. The doctor told me that a heart attack can even be a feeling of anxiety, so how you’re supposed to know for sure is beyond me! Now I’m on a daily concoction of pills, my current status is NYHA1, which means that I shouldn’t have any limitation of physical activity, although I do find I can get quite tired if I do a lot, but that could be a vicious circle because I’ve not been as active as I might be.

I’ve been trying to think back to when it might have happened – I mean, I was feeling quite breathless last August when I was on holiday in Ireland, and I was kind of aware as I was getting closer to Christmas that my stamina was decreasing, and I’d find that even just walking up the stairs to the office would make me breathless, and my cough (which I’ve always had due to allergies etc) was getting much worse – which actually turned out to be pneumonia and fluid on my lungs. At the time I just put it down to lack of fitness, and having hurt my leg earlier that year, which stopped me going to the gym and being particularly active on shoots.

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Scary heart stuff

Here’s a compilation of some posts from Facebook covering my recent unplanned stay in hospital…  I’ll post something more when I’ve had a bit more time to process it all!

Hospital update – 29th May

So, first of all, a massive thanks to Abhi who did a Tesco shop for me this evening so now I have some clean clothes / toiletries etc – I was sent sent to A&E by my GP so only had the stuff I arrived at hospital with!

I’d been to my GP on Friday because recently I’ve been so breathless that it’s just been stopping me doing anything, and also I’d noticed I was rapidly putting on weight even though I’ve hardly been eating anything.

Anyway, my doctor told me to go to Stepping Hill hospital to get a chest x-ray, and by yesterday she’d got the results and asked my to come in right away to go through it. It was showing that my heart was enlarged, plus my breathlessness has actually got worse, and I’d also started up coughing bits of blood the night before.

I was told to go immediately to A&E by Uber – not detouring via home, and leaving my car parked in the street outside the medical practice!

So once in A&E, I had some blood tests done, another chest X-Ray and then an ECG. I was told it looked like my heart is massively over-working, and a knock on from that is that less blood gets to the kidneys meaning theres lot of liquid retention around the body.

I was moved to the Medical Assessment Unit last night, and I’m still here tonight!

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