Another personal post, on being in hospital and suffering. And so, after a substantial wait, the IV feeding for which I had been waiting started. The feed itself looks like the worst kind of science fiction matrix food goop that you can imagine. Of course, the advantage is that I don't need to eat it. It's going straight to source.

The Feed

On day three, though, they still didn't have the vitamin component of the feed up and running, though. The reason for this is that the pharmacy did not supply the safety sheet that has the full administration instructions. Yes, the pharmacy told the nurse on the phone how to administer it. However, the nurse, fearing future negligence or litigation claims, refused for his own legal safety to administer it to me.

Coming up to 24 hours after that, and I still had not seen sight of these vitamins. I'd got to the end of the first bag of feed, and of course, the prescription is not ready for the next bag, so I have to completely stop. I'm sitting in hospital, just waiting. There is an awful lot of just waiting in hospitals.

The Sleep, Infection Control, and Other Frustrations

There are further hospital annoyances about which I had forgotten. The worst of these is when health assistants burst into your room at 4:30am to take your blood pressure, blood sugar, pulse, oxygen saturation and every other thing under the sun. In this instance, she also managed to almost pull the PICC line out of my arm, knock over the feed, and trip over my shoes on the floor. It was generally a total fiasco.

Why do they have to do these basic observations at 4:30am anyway? It would be much better for patient recovery to be able to sleep. I appreciate that on some wards, it is crucial to administer drugs or even check obs throughout the night. But for me, it clearly is not.

This is, it seems to me, symptomatic of the way that hospitals are arranged around doctors and their planned schedules, rather than thinking about what is best for patient recovery. This healthcare assistant was probably in a panic that she needs to get these observations done for the entire ward by the time doctors get here, some of them at 8:30am or 9am.

Well, okay, but that's still four hours, and I just don't think it's sensible to expect to have those results by that time in the morning if it means interrupting patients' sleep.

They have also forgotten to change the dressing on my new PICC line, which was supposed to be done after the first 24 hours. Well, it is going to be more like 48 by the time they get to it. Another great safety procedure. Everybody has told me about the high risk of infection on this procedure because you're putting glucose in and it can create a bacterial feeding ground around the input port. But then things like this slip by and I have to chase them, whereas a patient in a less capable state would not be able to.

I am also quite appalled by some of the infection control on the ward here.

The infection control team came around and said that the tips of my PICC line should be changed with every infusion. They have not been for the whole week, until I insisted on it today. They also said that the open line should be capped when not in use. This has not been done and when I asked the nurse to do it, I was told that they "don't have the caps on the ward", so it's still open.

Nurses have cleaned the ports (sometimes for less than a second), then dropped them on the bed or onto unsterilised clothing, then connected them straight after that (I now grab it myself so it can't fall after cleaning). The port change, today, was also dropped on the bed out of the sterile pack – but they don't start again, they just connect it up, before I can complain. Some of the staff get indignant when I ask them to do it again.

They do not seem to realise/understand/care that I am seriously immunocompromised and that a line infection could kill me. But it is hard to continue being picky and complaining, when you rely on people for lifesaving care.

Another example of thinking that is not connected:

The nurse comes round to do a drugs check in the morning to make sure that I've taken the drugs that I take every morning and know what to do, but someone needs to sign them off (ridiculous, anyway).

They do this before I have been given anything to eat, yet the drugs require food to be consumed with them; at least two of them do. So, no, I haven't taken them yet. Presumably, if I weren't doing my own drugs, she would have dispensed these and I would have taken them without food, running a greater risk of gastric perforation. It's beyond frustrating.

Fluid Overload Risk

One of the remaining unanswered questions for me is how we can remove the fluid that is being added by the liquid IV feeding. Because, as a total kidney failure patient, I do not urinate, any fluid that goes into my body must come out via dialysis. If you don't do this, you end up basically drowning inside your own lungs. It is the most terrifying experience to which I have ever been subjected.

I can only tolerate a certain volume of fluid being removed over a three- or four-hour dialysis session. I have calibrated my fluid intake so that I know normally how much I need to take off, because I have the same amount of fluid every day. But now we have these additional litres of feed every day, and I have to work out how to balance them so that I do not become saturated. No renal doctor has yet given me advice on this.

My excellent renal nurse for home haemodialysis has recommended that I begin an alternate-day schedule. The feed is an extra 2 litres per day, which is usually my entire fluid allowance. This is pretty frightening because taking off a lot of fluid during dialysis makes you feel extremely unwell, causes your blood pressure to crash, gives you horrific cramps (and more!) It's far from ideal.

So I am doing my best, but it basically means I can drink virtually nothing. This is problematic as I need to take my meds every day – and there's a lot of them – and I also really need a cup of tea. At least one. Please. I'm sure that's partially whence my crashing headache came.

The Ups and Downs

So the strangest thing – WARNING: about to discuss bowel movements – is that I have had terrible, relentless diarrhea for 7 months. But since Friday, in here, I have began suffering from severe bowel dysmotility, due to autoimmune gut inflammation, of the kind that has hospitalised me before. This was causing serious bowel discomfort and a growing nausea.

Anyway, Saturday was a very bad day. I had a serious rheumatoid flare. I woke with a stye in my eye. Blood pressure shot up to 186/108. Pain in neck was unbelievable and light-sensitive headache off the chart. Blinding agony. Constant nausea. The worst I have felt in some time.

Then I started vomiting. And that went on for 48hrs on and off. Not fun at all, but another symptom of the bowel dysmotility. So I had to stop eating, which cleared things up. I have been gently nibbling today and so far it's OK… I even had half a meal this evening, the first since Saturday night.

Anything Good?

I do seem to have improved in some areas already. My walking is SO much better. I was able to go further, with much more balance than I have had for a long time today. I still have my stick and my wife Helen to support my walking, but it was such a giant step forward. Perhaps this will help on this front (though it will not stop the fact that my left hip needs replacing.)

Now I am over(??) the horrors of the weekend, I have done a good day's work today and feel back on top of things a bit more. There is progress being made on the referral to the home team, so I can get out of here, eventually, and so far, I have not died (see infection control, above).

I moan a lot, here. But being in hospital is miserable and I need a cathartic outlet. There are many many kind people who have done me great services but who do not get a mention here and I guess that is unfair. I still love the NHS, what it stands for, and how it works. You'd get the problems I had just as easily in a private hospital, too, and insurers might deny me loads of the meds that I need. So I say: bless the NHS and the staff within.

Feed, Infection Control, Fluid Overload was originally published by Martin Paul Eve at eve.gd: Martin Paul Eve on August 17, 2026.