apathy

I didn’t sit down in front of my computer with the intention of writing two blog posts today, but I rambled on so much about my MiL that it seemed better to keep her separate from the PD woes.  Also, Blokey is currently doing his once daily manual exchange and he’s grumbling about it not working as well as it should … 

It is pants.  He’s barely drinking anything because he’s so scared that he’s just retaining all the fluid.  Obviously this worries me because he needs to drink, especially as it’s now summer.  Ok, so our summers aren’t excruciatingly hot, but they’re still warm enough to need to keep your fluid intake up. 

Blokey had a PD appointment at the clinic this week.  He’s treated at A so he’s under the care of some top-notch doctors and consultants, but they don’t know what is wrong.  They’ve asked him to go in on Thursday for a second ALL DAY appointment so they can do thousands of tests, xrays and scans.  He had a similar one just six or seven weeks ago so I’m not sure what they’re hoping to achieve.  They wanted him to go in on Wednesday but he refused because he’d have to miss the England match!  As it is, he’s pretty pissed off with missing another day of work and he’s worried about telling his line manager.  *sigh*

He seems to think that everybody else who tries PD gets on really well with it.  The fact that it doesn’t seem to work very well for him makes him feel like a failure (this is me putting words into his mouth).  I’ve tried to tell him that not everybody gets on with PD but his response is based on what he was told at the hospital; that in the last three years they’ve only had two (although this changes – it became one today) people who didn’t get on with PD and had to go back on HD. 

Because obviously A is the only hospital in the world …

I know he hates HD but he really was so much happier.  And when he was happier he shaved more!  It doesn’t help that with every single drain during the night the machine is still beeping loudly to tell him that it’s not draining enough.  He sits up, squishes around for a bit and tries different positions until he gets the right amount out.  This means he’s still not sleeping properly.  But at least I’ve started sleeping through many of the alarms.  Huzzah!

Oh!  And four and a half weeks ago he had a transplant assessment.  Both the surgeon and the doc seemed quite happy and told us that they were going to put it to the panel.  They didn’t give us the impression that they were going to advise that he didn’t go on the transplant list; in fact they sent him down to have oodles of blood taken so that the labs could start work on tissue-typing.  They told us we would know in three to four weeks. 

We still haven’t heard.  I told him to ring someone. 

Who?, he asked. 

Um, the transplant nurse we met.  Didn’t she give you her number?

He won’t though.  So I will, even though I have this horrid phone phobia.  Sometimes it’s just best to get these things done when your husband is sitting on his arse being apathetically miserable.  I know why he doesn’t want to do it himself; he’s worried that he won’t get on the list and the not knowing that is better than just not knowing.  But he needs to know, especially if it’s bad news. 

I need to go and weigh his pee.  Oh.  Joy.

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2 comments

  1. Two questions:

    See that second paragraph? “It is pants. ” You never did return to the pants.

    Why do you have to weigh his pee? Doesn’t the bag have volume on the side? This might be a continental difference, here they had volumes marked on the bag. Well they did in the late eighties…
    Was his pee a good weight?

  2. No, our bags are plain; no volume markers. And it wasn’t a good weight. I have to empty his pee too. He laughs at me and says, just put it in the (medical incineration) bag, but I have this fear that the pee bag will split and the house will be flooded with pee. It’s amazing what you can get used to when you have to get used to it.

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