exhaustion

sniffles

Blokey has had a cold man-flu this week.

Whenever he gets the sniffles I can’t say a bloody thing. Whatever I say, or do, or however I act, it apparently shows that I resent him being ill.

Everyfuckingtime.

I’m of the opinion that he perhaps needs to look up the word ‘resent’ in the dictionary, whereby he’ll find that it says, to feel angry because you’ve been forced to accept someone or something that you do not like, or to feel or show displeasure or indignation at (a person, act, remark, etc.) from a sense of injury or insult.

I don’t resent him being ill.

I do resent him telling me that I resent it.

The truth is that I worry, constantly.  This worry manifests itself twohundredfold when he gets the sniffles, or an ulcer or a headache.  Or when I think he isn’t peeing enough.  I don’t think I handle my worries well and maybe this makes me act resentful, in his eyes, when he’s feeling under the weather.

I got very angry.  I told him that I don’t resent him and it’s ridiculous that he thinks I do. I went on to tell him that what I actually resent is that I’m not allowed to feel ill and that he doesn’t think I’m ill because it’s all in my fucking head.  And yes, as I snarled those exact words in his general direction I did jab my finger at my head. Then I did the teenage strop and tried my best not to let my Mumsy know we’d had a minor tiff, for she was watching the tellybox downstairs.

Oddly, he’s been quite nice since then. And his sniffles are disappearing.

(Day 856, NO DIALYSIS!!!)

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All Hail, Oh! Doom and Gloom!

Blokey drove himself to his clinic appointment this morning, so I opted to go along too, just because it’s nice to get out of the house every so often.  Okay, I would be most definitely lying if I said that was my only reason for going.  A lesser reason was so that I could sit in on the appointment and hear what the lovely doctor said.  Why?  Call me silly, but I have this far-fetched belief that my husband tends to only hear what he wants to hear.

After the appointment it became apparent that my far-fetched belief is not-so far-fetched after all.

This is what Blokey heard:

Doom doom doom, gloomy gloomy gloom-gloom.  Biopsy equals rejection equals back on dialysis.  Oh, woe is me.

This is what I heard:

Yes, the creatinine is a worry and yes, we would expect a living donation to not be acting like a cadaveric donation in that respect.  Yes, this fluid bubble issue is not an issue and we see it often.  Yes, we expect that you will have to have a biopsy.  BUT … the creatinine might stabilise at a higher rate because wifey is smaller than Blokey.  Biopsy does not equate to us believing there is a definite rejection issue.  Kidney is working beautifully and all levels (bar the creatinine) point to this.  Blokey, you are looking really well.  Smiley smiley smiley. 

So, I got the impression that she was advocating a biopsy because she believed it wouldn’t show that Our Kidney is rejecting and would put Blokey’s mind at rest and enable them to throw more of the right anti-rejection drugs in his direction.  Obviously if it does show signs of rejection that’s a bonus too because they can work with that.  Blokey gets the impression that a biopsy can only ever be Bad News.

This is exhausting.  Chivvying your husband along and trying to make him see the positive aspects, whilst worrying about it yourself is a very hard job (and as such I should perhaps charge him the going rate for ‘wifey who puts up with lots’).  Sometimes I want to slap him.  Sometimes I just want to storm out of the room like a spoilt brat.  I could cry for England and come very close to winning a Gold.  Mostly I just want to huggle him and make it all go away.

At the weekend we belatedly celebrated his birthday with his immediate family.  He was fine all day and as soon as they stepped through the door he plastered his perfected Oh, pity me for I am so miserable and nothing ever goes right for me look onto his face.  He was still continuing this in the resturant and when I couldn’t take it anymore I turned to him and whispered, Every time you talk like this it’s a slap in the face for me! and he didn’t talk to me for about five minutes.  But then he did and everything was hunky-dory.

I was being honest though.  I feel like a failure, with a little help from an apparently defective kidney.  When he grumbles about how it’s not working as it should be working (for he has done extensive research into this and knows he is right) he might as well be slapping me in the face, or punching me in the tummy, or … kicking me in my one remaining kidney.

Haha.

It hurts.  Lots.  I went through this so that we could attempt to live a better life with NO DIALYSIS!!! and although we’ve achieved the NO DIALYSIS!!! aspect (to date) we still have a long way to go before either of us will be happy that it’s working to its best possible potential and ability. I know we’ll get there, but if there’s a magic pill to help us get there a tad quicker that would be most appreciated …

Losing a kidney, but gaining a life (part the third)

It’s a massive disappointment to discover that they didn’t do the whole ‘Can you count backwards from 10?‘ scenario.  Blokey had assured me that this would be the case, and that I wouldn’t manage to get past the number 10.  Mr Anaesthesia was obviously of the opinion that counting backwards was not for me, instead preferring to insist that my last words signified intoxication and merriment.  Cheers!

So one moment the room was spinning and the next I was choking.  Except I wasn’t choking; I can only assume that I was beginning to wake up as they removed the tube from my throat.  I didn’t even mumble any funny business as I came round.  All I could manage was a feeble It hurts! when they asked if I was okay.  I remember little about the recovery room.  I do remember that it was full (I say full, but there were perhaps four or five other patients in there) and we were all in varying stages of wakefulness.  I was asked how much pain I was in (scale of 1 – 10) and I think I said 7, but I can’t be sure.  The nurse made sure I could use the pain relief button attached to my left hand.  Yeh!  (It didn’t actually work that well, I don’t think.)

I was back on the transplant ward by 3pm and five minutes later my Mumsy joined me.  Looking back now, I am so pleased she was with me even though I was so groggy that I barely really noticed.  Who else was going to help me sip water through the straw and hold my hand?  She informed me that she’d arrived at the hospital at 12.30pm and had a lovely natter with the Living Donor Lady who rang down to theatre and then told her that my kidney had just been removed and was about to go through to Blokey.

I have only vague recollections of the remainder of Day Zero.  Apparently one of the first things I said to Mumsy was that two twelve year old boys had been in the operating theatre watching the transplant.  A doctor came to see me at one point and did a bit of prodding.  At some point in the darkness of the middle of the night he took bloods because he was worried as my BP was so low (it got down to 72/49 at one point).  I slept mostly, except for those occasions when a nurse took my blood pressure and whispered that she wanted to know how much pain I was in.  Mostly I was on a pain of about 4.  Even when it was worse, or better, than the previous time I still said Oh, about 4, simply because I had nothing to judge it against!  I don’t know how much pain I was in! I just know that sometimes it was excruciating and other times it wasn’t.

Oh, and the urinary catheter?  Sheesh, what am I like?!  I didn’t even realise it was there.  *happy face* … It was, however, a bit weird not having the need to wee.

Night-time was horrid.  I didn’t really have a clue who was on my bay in the ward, but the noises were sickening.  I refuse to go into detail though.  I slept in the way that groggy people do … fits and starts.

NO DIALYSIS!!! Day One:

Breakfast?  I don’t think so!  Do I look like I want to eat something?

*sigh*

A team of doctors arrived and squished my belly around.  They noted that my BP was steadily rising, although still not quite normal.  Then another doctor came around and decided that my catheter and cannula could be removed, as could the pain relief.  Apparently I was barely using it.  This may account for the reason it wasn’t working very well.

D’oh!

At some stage I must have asked about Blokey, but I honestly have no recollection of doing so.  This makes me feel heartless, but I think I was in so much pain and discomfort, plus I was fighting off copious waves of nausea (I am vomit-phobic) so I had little chance to actually think.  I was also aware that they would have told me if there had been any complications, and they hadn’t, so he must be okay.  I got to find out at about 2pm on Day One.  The nurse removed my catheter for me at 1pm.  It didn’t hurt, at all.  I’ve finished! she said.  Really? I replied!

Mumsy arrived soon after and we walked round to Blokey’s private little room.  He was fine!  His pee was red, but HE WAS PEEING!!!  WooHoo!  I was told off by the nurse for not wearing the gloves and apron.

*sigh*

He wasn’t even MRSA positive! Dimwits! As it transpired, he was actually happy to be negatively-positively MRSA free because he liked having his own room for the duration of his stay.  He didn’t have to suffer the embarrassing noises, or the snores, or the humiliation of attempting to throw up in a room full of strangers and being unable to, instead making ridiculous gagging noises.  The woman in the bed opposite mine was lovely though … We’ve seen it all before, she laughed.  She’d been in for ten weeks, bless her (bowel related, not kidney).

I attempted some food that evening.  Scrambled egg and mashed potato.  How’s that for a combination?! I struggled through the scrambled egg but left the potaoto.  It was manky.  This was a shame because the mashed potato has always looked lovely when Blokey’s had it on previous admissions to hospital.  I’d vowed I was going to have it, and now I vow that if I ever have the misfortune of having to return to hospital I will never eat it again.  I may steer clear of the scrambled eggs in future too; they came back up less than an hour later (thankfully I made it to the loo in time, although I very nearly didn’t; I had visitors and thought they would never go away and I’d have to grab the sick bowl and do it in front of them!)

And speaking of toilets, oh my gosh!  Why did nobody explain to me that I’d have to wee in a bedpan?! ‘Tis okay, I could do it in the privacy of the bathroom, but peeing in a bedpan?!  With four of us in the bay the toilet quickly became a storing room for bedpans of wee.  It’s amazing how quickly your feelings of humiliation bugger off when you’re in such a situation though.  I mean, two of the women had stomas (I had no idea what they were till I got home and looked them up) and one of the women made constant noises and needed constant clearing up.  In comparison my feeble attempts at recovering from a major operation were daft.

I did sleep a lot on Day One, but found sleep difficult as the sun went down.

NO DIALYSIS!!! Day Two:

I managed breakfast (toast) and then the doctor said I would probably be able to go home that day, but only on the proviso that I’d managed to do a poo open my bowels before I scarpered.  I was happy with that … having a poo bowel movement couldn’t be too hard, surely!? I’m a pretty regular goer in normality, after all.

I was a tad bored on the morning of Day Two so I wandered down to see Blokey (remembering the gloves and apron this time!) and we had a little competition to discover who was in the most pain.  He thought he was, and I thought I was.  It was a draw.  He was STILL PEEING!!! which was lovely.  But he was miserable.  I hate seeing my Blokey miserable, and it’s even worse when there’s nothing you can really do to help because you’re in SO MUCH PAIN yourself!  Day Two was lots of worry about whether Our Kidney was actually working well enough.  It was also the day that I found out there’d been some umming and ahhing about taking Blokey back into theatre on Day Zero.

I managed more food at lunchtime (chicken and sweetcorn pasta, which was actually rather tasty) and it stayed down.  After a very sweaty ‘nap time’ (it’s like being at nursery; they turn all the lights off and close all the doors) Mumsy came to see me and we began our adventure with my bowels.  I do need to go, I can feel it, I said.  But I didn’t go.  I couldn’t go.  I think it was partly the fact that I had to go in a bedpan.  The nurse informed me of this when I specifically asked if I had to go in the bedpan. Oh yes! She laughed, We like to see evidence of everything!  It was also partly because opening your bowels tends to involve muscle usage and those muscles tend to be in the abdomen area.  A major operation around the general area of your abdomen tends to make your tummy rather tender.  Straining is not a Good Thing to indulge in!

We walked around the ward lots.  Mumsy was of the opinion that this would cause my bowels to open.  Occasionally on our ward round we popped in to see Blokey in an effort to cheer him up.

My bowels remained closed.

I just wanted to go home and be in pain in the comfort of my own home, with a tellybox and everything!

Dinner was lamb casserole with broccoli.  Again, I was surprised by the yummy-ness of it.  But it didn’t make my bowels want to open.

Eventually I did that thing I didn’t want to do.  I asked for a suppository.  Aaaarrrggghhh!  One of the nurses did it for me; I’ve never stuck anything up my bum before (does that spoil my that girl will do anything non-existent image?!) Are you sure it’s in the right place, I asked her.  Of course, she chirruped! I do these all the time! I know it wasn’t in the right place.  Nobody believed me, but I know the difference between that hole and THAT hole on my own body.

I’m now of the opinion that this nurse was a shit nurse.  I hold nurses in high regard generally.  I think they have to put up with some truly horrendous things and I honestly couldn’t do it, not least because funny smells and nasty pus-filled body parts cause waves of nausea to crash through me.  At about 9pm I was desperate.  Mumsy was saying she’d have to leave soon, and I couldn’t bear the thought of one more night in the hospital.  As there had been a shift change, another nurse tootled on over to insert some more suppositories.  These were in the correct place. Oh yes!  And half an hour later they did their job splendidly!

I knew you were going to go that time, said the lady opposite.  I could see it in your face as you went to the bathroom!

So, I ran stumbled painfully round the ward in jubilation, searching for a nurse

I’ve done it! I said. The evidence is in the bedpan in the bathroom.  Please can I go home now?

I don’t need to see the evidence, she laughed.

Who told me they needed to see the evidence?  Oh, of course, it was the shit nurse.

*sigh*

So I poured the evidence down the toilet and packed my bags.  I had (loose) cuddles with Blokey and said a sad goodbye as Mumsy took the bulk of my stuff to the car.  At 10pm on Day Two I was discharged, minus my discharge notes because the printer had broken.  We had a long slow walk (ask for a wheelchair, you numpty!) through the hospital, to the car, complete with a huge bouquet of flowers from Blokey’s work.  Blokey had been told off about them; his boss had visited and brought them in earlier that evening.  He’d been buzzed in and walked past however many nursing staff to get to Blokey’s bay and nobody had told him that flowers weren’t allowed!

It was a painfully uncomfortable journey home (fifty or so minutes) and upon arrival I just collapsed into bed.

Spending a day trying to poo open your bowels is really exhausting.

more pants

I’m afraid I was premature with my Huzzah! yesterday.

Last night the machine alarmed a zillion times with every single drain.  I am exhausted, Blokey is shattered.  Today is going to be a horrid day. 

Still, his UF was only -1ml.  I was expecting it to be -something higher than 1. 

I’m trying to stay out of his way, but will need to go and fight him for control of the tellybox soon (I need to do my Wii Fit Plus exercises).  I can hear him coughing; yesterday he coughed something up (not blood!) and is convinced the fluid is now settling on his lungs. 

It will be nice if Thursday can roll round quickly with the result that they find a solution to the misery.