Why must we hide emotions? Why must we never break down and cry?

So the virus thing that was hanging around at the end of my last blog turned out not to be viral at all.

Some investigations at the hospital after I turned up feeling not at all well led to us finding out that I have a little bit of a problem with my heart. The previous knowledge that my kidneys were a bit on the dodgy side had made me worried that I was retaining fluid - I had been feeling all puffy and bloated - and was worried that I was maybe breathless because I had some fluid on the lungs. Every test they did suggested that the kidneys and lungs were fine but there was clearly something wrong so they expanded their scope and did indeed find that there was a heart issue and it was by no means a small one.

I have what they call Left Ventricular Systolic Dysfunction. For those who aren't so up to speed on physiology here is a little bit of the medicine. Now the heart is not symmetrical. The right side deals with sending unoxygenated blood up to the lungs to get some gas and then it comes back down and the left side pumps it out to the rest of the body via the aorta. My issue is that the left ventricle isn't filling and emptying the way it normally should. It's almost like the heart doesn't have the strength to pump all the blood out and all round the organs that need it to operate well. This means that they all run at a little bit below normal. With me that manifests in lots of ways but the main one is shortness of breath - something I am not all that unfamiliar with. And therein lies an issue.

I had been so used to occasional twinges in the chest and breathlessness due to the lung issues of the previous decade or so that I had spent quite a while ignoring what had been quite powerful alarm bells ringing. I had been exercising on my rowing machine all through a period where the cardiac team had judged me to be suffering from quite pronounced heart failure. I just didn't know. How could I?

They think that this must have been an issue for at least 3 or 4 months, a period in which I had felt that I had been improving markedly. Up until I wasn't obviously. The feeling amongst all docs is that this damage to the heart muscle is directly attributable to the Total Body Irradiation I had pre Bone Marrow Transplant, which isn't a massive surprise really. That course of treatment has really done a number on me but the alternative to it was dying so it feels churlish moaning too much about it. This is a strange presentation of LVSD in that the heart itself is damaged but there doesn't appear on first viewing to be any damage to the arteries and veins involved. This Ischaemic disease would go hand in hand with a conventional presentation of the condition that you would expect in the normal patient (West of Scotland male in their 60's) so the fact I don't have that does stand in my favour.

And so I have now started on medication that will help out the heart, and will hopefully have a knock on effect on the kidneys, although they are also an issue. Again with the damage from TBI they have been a long standing thorn in my side (that's all they'll ever be). Kidney function tests have shown a deterioration over time and the fact I am on cyclosporin to stop me rejecting my lungs isn't helping the cause. We are now looking to the transplant team for ideas about alternatives for my immunosuppression regime, although I am not holding out a massive amount of hope on that front. For such skilled physicians in so many regards they are incredibly inflexible when it comes to moving away from their approved regime. When they do deviate from the norm their first port of call is tacrolimus which I am unfortunately allergic to so I'm not really helping them either if I'm honest. If we can't find an alternative to cyclosporin then we will have to find other ways to be a bit kinder to the kidneys, which will mostly involve looking at my entire repeat prescription and finding alternatives to some of the nastier stuff on there - this will be no small undertaking and will require the co-operation of many different groups of consultants and that isn't something they are well known for. Annoyingly each one tends to feel that they are at the top of the tree and can be quite dismissive of the work of others. This isn't really helpful for the patient, as I'm sure you can imagine. Avoiding yet another transplant is the  order of the game here. The irony of maybe needing a transplant because of anti-rejection drugs hasn't been lost on me by the way.

Even getting them to share information with each other is a test of patience. Recently I had the transplant team moaning to me at clinic that they hadn't been informed of the heart issues. I know they had - I was in the room when the phone call to discuss it took place. That they hadn't yet received a letter explaining it all was their issue but I felt that them moaning because their own staff hadn't bothered to let them know that they had been phoned was a more pressing issue. It is all fine and well with a patient like me that can talk to them about their treatment and can even rebuke them for their own failures, but it really fucking bothers me that there will be patients out there who could well be let down by simple stuff like this.

Anyway, I shall spend the next wee bit trying to make sure that they all effectively communicate with each other while I undergo the masses of investigations to assess what the next steps will be.

Away from all the medical stuff I have been pondering things for a while now. I've written on here before about how it is strange how you can't make any predictions at all about who may step up and really help you when you are in a bit of peril and those who, by doing nothing, seem like they have taken a step backwards and away from you.

On a case by case basis you can examine any number of rationale as to why this happens and so nobody comes across badly from it, but when you look collectively (and this is what you do when in a hospital bed) then you do begin to wonder why your group of friends isn't responding in the way you may have hoped they would. In my instance there is almost a feeling of fatigue about it as far as I can see. If anyone else had heart failure for instance I have no doubts that my friends would rally round in exactly the way you would hope. Unfortunately with me it appears to be true that because I do always get through things and at least appear to do fine then I maybe don't need their help. I am very much a victim of my own success. If you throw in that our approach has always been to minimise how scary these sort of things are then perhaps we shouldn't start behaving differently now. In my mind though there is the worry that my own fatigue is an issue. The very fact I have got through things in the past doesn't mean that I'll be fine this time. The literal and metaphorical scars from previous bouts have left me gradually weaker each time something happens and my luck will run out one day. That notion terrifies me.

As i hinted at above though it really is only when you look at collective behaviour that this is an issue. You can't criticise any one person for things that aren't their doing. You can only judge them for what they actually do, or don't do in many cases.

This morning I woke up from a particularly vivid dream, and I had a proper Damascene moment of clarity based on it. Basically I have been looking at this all wrong. When trying to understand others you should always try walking a mile in their shoes, not least because then they'll be a mile away and you have their shoes. All joking aside though it is staggering that I haven't done this in any honest fashion before now. It has always been me simply trying to understand them but affected by my own critical glance at the outset and so any conclusions are massively skewed towards what I'd like to think I would do rather than what I probably would do.

When I tried simply thinking how I would behave if the situations were reversed then I didn't come out of it in maybe the way I would hope either. I should definitely clarify that. It's not that I wouldn't care or wouldn't try to help - it's more that I would maybe fall short because I would actually be so affected by their plight that I couldn't be more use. Their grief is actually incredibly sophisticated and I've been making the mistake of looking at it like something simple.

All things considered I feel that being the patient, with all my myriad problems, is sometimes easier than being one step removed. Those who are closest to me have an absolutely hellish time of it. I think I have a fairly decent handle on the everyday medical stuff and am not too bad at dealing with the psychological side of things too. It now seems quite clear though that being even just a single step removed can be harder as you aren't just dealing with all that stuff but you're also watching someone you love struggle. What I need to do more than anything is to stop worrying about what others are thinking (or what I assume them to be thinking if we're going to be accurate). It's not fair on them for starters and does end up just taking up too much time. One of the first bits of advice I would dole out to anybody else who is going through a chronic health condition is to read the serenity prayer. Accepting the things that are outwith your control is a massive step towards genuinely good mental health and having the wisdom to identify those things in the first place is hugely important to that end.