A personal log entry, here, so I can (with any luck) look back on it, should I need to remember this incident. Also cathartic writing. Due to severe chronic norovirus since January – so 7 months now – I have become severely malnourished and lost a lot of weight. It has been decided that I need Total Parenteral Nutrition (TPN); IV feeding. My weight is on a downward trend from 59.5kg.

Admission

We are doing this at Kent and Canterbury Hospital, which is nearer to my home. We hope to get discharge to the home/community via a referral to St Marks’s hospital, in London, who manage TPN in Kent.

I arrived at K&C Hospital last night and the immediate “check-in” process began. It’s a right palaver. I had warned my work that the first few days are likely to be very disrupted. But I believe this will calm down.

I have my own room. This is fortunate and good for my protection, with my useless immune system. But it’s also, actually, for the protection of other patients. While I have norovirus, they do not want me sharing a bathroom with other people on the ward. It’s a basic room. Sadly, it does not have its own bathroom (as I know other siderooms here do), so I have a commode parked next to the bed, ready for another of Those Norovirus Nights (worst musical number name, ever).

Meds

There are many more minor things that I hate about hospital admissions, but at least one of them is the insistence on taking away my meds and dispensing them to me. Well, I’ve done my own complex drug administration, day and night, for 20+ years. I am clearly competent. It feels very infantilising. If they want to change the regimen, I would rather that they had to tell ME, not just some discussing with some nurse who does it. I want to know what meds and what doses I am on. If they want to stop a drug, introduce a new one… tell me.

But even worse, what really bugs me, is: they often get the meds wrong. I have medications prescribed by three different NHS Trusts across 6 different departments (I think). The drugs used by rheumatology are not known to the renal team. Communication is always poor between Trusts (and often inside single Trusts) so usually they will never see something like the note from endocrinology that says “do not drop steroids below 7mg; risk of adrenaline crisis” etc.

So then, if they have taken out the pills and administered them to me, I can’t tell, just from looking, what they have given me, in what dose, whether it correlates to what I know from discussions with other consultant… And therefore whether there’s a mistake. It’s supposed to be for patient safety. In my case, it can make this worse, though I do believe they should have an accurate and up-to-date list of my meds.

Finally, I am often in a lot of pain. I mean a lot. Nursing staff are busy on the ward. They have seriously ill patients in life or death situations. But I also need my pain meds, sometimes pretty urgently. In this system, I have to bug the staff for the drugs that I take safely at home. And they can take ages to get to you, because they are understandably busy. At the Royal Free Hospital, I waited over an hour in the night, after asking a nurse for my pain meds, for them to be brought to me. When they arrived they were the wrong dose; a lesser dose. It was awful.

Vascular access

Then there is a challenge with all this that had not previously presented itself, to me at least.

I currently have:

1. A central line in my right-side. It loops up from the middle of my chest, through my neck and into the veins near my heart. This must be used exclusively for dialysis.

2. A “fistula” in my left arm. This is a surgically created mega-vein. It can be used for dialysis, but has a fault, as you may remember. It bleeds for over an hour after every dialysis session. They have not been able to find out why. This is not safe (when these things bleed, they bleed, with huge pressure output), so I do not use it for dialysis. But I could.

So, the TPN will need a new line. But, on the one hand, they must be so careful using the right arm for a “long line”, as it could disturb the right central line in my chest. This is important: we do not want to compromise my dialysis access. On the other hand (almost literally) they cannot go left arm or left chest as it might destroy the fistula. That said, I believe the main danger pertains to fistula maturation, rather than permanent use/destruction.

The problem is: the right central line, which I have used for almost 3.5 years for dialysis, will inevitably fail at some point. This will be a medical emergency, as I will not be able to dialyse and will have a very limited survival time. If we have used up all other possibilities for vascular access – the fistula and a left side line, for example – it could be problematic (understatement).

The doctor last night freaked me out a bit about this. Indeed, I was getting the feeling that, as and when my line dies, I will be in very serious trouble: I might likewise die. However, my consultant this morning seemed much more confident and we talked through the different scenarios. She gave me possibilities (re-use the existing site; unblock the line; try the other side; use the fistula and try to sort the bleeding problem etc.) for if the main dialysis line failed. So, I am not out of the woods with this problem, but it looked as though there may be a solution.

Apparently, there is and has been. I now have a set of two tubes sticking out my right arm. Tomorrow, I should get to know whether this has caused any problems for the dialysis lines in my right chest (!) It was a most curious procedure having it inserted, though. I felt it worm its way through my next (where it got jammed) and then back down. Very strange.

So we have got to the end of the day but I haven’t started TPN. Zero IV feeding but quite a bit of NHS lamb casserole feeding (lamb content: not high). The reason for this, apparently, is that they could not order the TPN until the vascular access was confirmed. So they don’t yet have it on supply. Another wonderful efficiency here…

As always, I would like to send my thanks to NHS staff – Nurses and Doctors – without whom I would be dead. I am very grateful, despite the above notes and rants!