Update and a mention of PEG feeding tubes

Not much to report today. Still not sleeping well or managing to nap much, so tired, but bored and still nauseated to a certain degree. Shaky, cold and sore backside. Awake as always by about 5.30. It did mean I did everything or had it done very early. My feed machine runs out a bit after 6 so they remove that along with a lot of blood samples and then stick in Ciclosporin which is an immunosupressant drug. Makes you hot and also burns my throat and inside – nasty but necessary. Also having a disgusting antibiotic IV shot thrice a day which tastes bizarre as it goes in. This sets me up for a morning of quease, but I have been managing to eat a Weetabix and rice milk. I showered using the chair and they changed the bed etc. Also ofc there’s the usual interruptions for observations, what I want for meals and cleaning which happens twice a day.

I see a consultant everyday – wonderful people.

I will be having a shot of something to buck my neutrafils up later today in my stomach.

The one message from today and in fact from other discussions is that if you can have a PEG feeding tube ( (Percutaneous Endoscopic Gastroscopy) put in, you should. Has to be done before the transplant. It sounds nasty and despite being sedated it wasn’t a pleasant procedure, but it was short and now I am having 1500 cals a night put in and in fact only have to make up another 200 a day. I have actually put weight on! This helps to fight infections. The key thing is that it takes the pressure to eat off the patient and that is very important. And other forms of feeding aren’t nice. The consultant and nurses all say that. I have to say that I said yes to it before engaging my brain, as I was scared. But it is easy to look after. I flush it through myself and just make sure it is clean round the hole. The feed just drips into my bowels all night from a plastic tube running down from my stomach. It will all be easy to remove and heal up once I no longer need it.

So lesson for today!