our relationship

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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getting jiggy with it

The best thing about Blokey having Our Kidney is that we have sex.

In fact, we’ve had more sex in the last few months than we had in the first five years of marriage.  CKD can play havoc with the libido of some folk, Blokey included.  I wasn’t so fussed; I like and enjoy sex (Blokey’s nickname for me when we first met was Insatiable), but my relationship with him isn’t defined by sex alone. Plus, we both have (magical) fingers.

I just felt the need to share that with you.

(Day 332, NO DIALYSIS!!!)

back to work

Blokey returned to work on the 3rd of January (Day 77 and still NO DIALYSIS!!!)

I am pleased to report that he hasn’t been feeling really tired.  I’m not sure if he is and it’s being masked by the fact he’s still playing his online Star Wars for Grown Men game, or he really isn’t. I’m going with the latter because it’s more brilliant.

I thought that normality post-transplant might involve a little more help around the house, but it appears I was wrong.  There are times now when I want to take him by the shoulders and shake him till he bursts whilst screaming, Why won’t you help meeeee?, but the feeling is fleeting and I just plod on.  This is helped by the fact that I started my part-time three-day-a-week lowly-paid job this week too and so I’m happy to do what I do as way of balancing everything out.

And because I still have a need to be in control.

*grin*

Me?  I’m fine, thanks for asking.  I even got groovy with some Just Dance 2 on the Wii this morning for the first time post-surgery.  Wow, I am SO unfit right now …

(Day 79 and still NO DIALYSIS!!!)

approval

We were told that it would take a week or so for the HTA to approve (or not) the live transplant, so you can imagine my surprise when Living Donor Lady rang (it’s okay, nothing to worry about!, she laughed) and told me that she’d already heard back from them and it was all Go!Go!Go! 

Blokey now has a few days to decide how this impacts upon him (us) being on The List.  He can come off with immediate effect, knowing that he’s soon going to become the proud daddy of my kidney, or he can request to stay on for another month or so and take his chances. 

Decisions, decisions!

tits n’ pricks #7

the journey

We barely spoke on the way to the hospital.  This wasn’t because we don’t like each other … it was simply because a) neither of us are morning folk, and b) it was going to be quite a Big Day and if my brain was churning out nervy thoughts then I’m quite AdamAnt that Blokey’s was doing the same.

the research

At the appropriate clinic Blokey laughed when it became apparent I’d had our appointment letter on me but hadn’t shown it to the receptionist.  That was two minutes we needn’t have wasted as she tried to find us on the system without our hospital numbers.  Or something.

*sigh*

As we patiently waited a woman pounced on us.

Did you get my letter? she enquired.

Indeedy we did.  We happily signed the forms, consenting to a bit of blood-stopping cuff-uncomfortableness prior to surgery.  It can’t damage the kidney but it could improve its chances; in other words, it’s definitely not a negative and may even be a positive.

the put-it-in surgeon

Blokey finally met the living donor coordinator-lady.  She introduced us to The Prof., a kindly man with a twinkle in his eyes.  Blokey went first, there was gaiety and lots of talking, and then Blokey returned.  Your turn, he said.  I toddled in apprehensively, unsure what to expect.  But it was just the standard chit-chat.  Confirmation of who I am, a round of applause for my weight loss and a few basic questions which I have to answer (seemingly) every time. No, I don’t smoke, I barely drink, Yes, I banged my head when I was six.

I KNOW THE F.CKING RISKS! (Another day, another post.)

Blokey returned.  The Prof. smiled and said it was a Go-Go.  I felt a little queasy.  Blokey grinned.  The Prof. spoke about the operation, its length, the risks, which kidney the take-it-out surgeon would remove, where Blokey would be whilst I’m away in Sleepy-La-La-Land … I just nodded, trying to take it all in, asking appropriate questions when I thought of them. 

We agreed upon a date (October) and suddenly it all seemed so real, and yet so surreal, and very near, yet so far away.  It was an odd sensation of hope and fear and happiness and relief and sadness and ohmyfuckinggod …

the living donor lady

She chatted to us afterwards.  I already knew about the catheter (and it’s the part I’m least looking forward to) but when she mentioned the enema I very-nearly hoisted up my skirts and ran.  Oh, nononono! 

The things we do for love.

She took our certificates and pictures so that she could photocopy them for the HTA (Human Tissue Authority) who are the only thing standing between us and No Dialysis!  She also made our appointment to see them at the end of the month.  As soon as we’ve seen them and they’re happy that I’m not being coerced into this, or given money/expensive gifts, then Blokey will be officially removed from The List.  Yikes!  No pressure for me! 

the vampires

No hospital visit is complete without a trip to see the vampires phlebotomists.  I think I had the work experience fifteen year old; he had to keep toddling off to his Masters to ask if he was doing it correctly.  Six vials of blood later and off I went, proudly showing off my little cotton wool ball taped to the crook of my elbow with surgical tape.  It’s always my proudest moment!

the take-it-out surgeon

I received more weight loss adulation from the take-it-out surgeon.  Yes, bow down and worship me.  He felt the pulse in my groin (yes, I’d tidied up down there and I was even wearing matching bra and knickers!) before prodding my sides and belly and asking if it hurt whilst he bruised my ribs …

Once again I nodded my little head off as he asked if I knew the risks and then proceeded to talk to me about them in detail.  I realise they have to do it but it does get irksome.  Finally he said I was a good candidate.  I thought that was jolly sporting of him and wondered if he realised that The Prof. had already Go-Go’d us, and if he did, was he just trying to be all-powerful and bestest.

the relief

I escaped from having to see vampires and kidney-stealing folk and wandered down to haemoD, where I enjoyed two hours in the company of my Blokey, who slept. 

Yesterday he worked out that he has about thirty-seven more haemoD sessions … the countdown has begun.

*laughs* (possibly high-pitched and nervous)

wot no title?

I want a new settee and armchair. I’ve wanted a new settee and armchair for the last three years.

We’ll get them when we’ve finished paying for the display cabinet, says Blokey.

Blokey wants a spankingly brand new car. He’s wanted a spankingly brand new car for about a month.

Let’s get one now, says Blokey.

This morning we toddled off to the Skoda garage to chat to a man about a car. We were going to pop to the Amazingly Big Tesco afterwards but Blokey had forgotten the ‘triple points!’ voucher, so we made do with the Little Piddly Tesco near the Skoda garage instead. Somewhere between entering Tesco and arriving in the milk aisle Blokey became ill.

Ill tends to be sudden with Blokey. Obviously he IS ill, always. His body is constantly fighting waves of poison and waste that us ‘normal’ folk get rid of without a second glance. But when he becomes ill, it is sudden. Scarily so. This morning it was probably dehydration, but we can never be sure. He was out of breath, pale and feeling dizzy.

So I opted for snarkiness, and lots of huffing and puffing down the frozen aisle.

I am a bitch.

I don’t mean to be. It’s partly because I get scared; it’s terribly horrid to have to live with the fact that the person you love is – technically – at Death’s door and everytime he gets a pain or feels sick or feels out of breath the thoughts that go through my mind tend to be edging to Morbid Side. It’s also partly because it annoys and frustrates me. I feel as though I do everything. I am nursemaid, cleaner, laundress, chambermaid, pet-feeder, wheelie-bin operator, cushion plumper, chef, shopper, gardener …

Blokey does the dish-washer.

I don’t mind. Genuinely, I don’t.

What I do mind is that his brand spankingly new car is more important than my settee and armchair, and that on the one day we’d actually agreed to go and look at a new settee and armchair Blokey’s body decided that it was going to go skewy, but only after we’d been where he wanted to go, to talk about something we can’t really afford.

Cheers, Blokey’s body! I ♥ you, too.

Sometimes I just want to act like a two-year old and have one of those unfussy tantrums, where after five minutes the sobs subside into hiccoughs and everything is very-nearly hunky-dory again. Instead I have to act like an adult, and bite my tongue whilst gently stewing in my own anger.

I’m very good at it.

(We’re going to the furniture shop tomorrow, but only if Blokey’s body is being good.)

the art of dying gracefully

As I got into bed last night Blokey turned to me and asked me what the longest was anyone had survived ESRD through dialysis alone.  Years and years and years! I gushed, because I’d read that somewhere on ihd dot com.  Then the conversation went something like this:

Him: I’m going to die.
Me: We’re all going to die.
Him: But I probably won’t live to see … *pause* [I have no idea what he was going to say, or what he was thinking] … I’ve been paying into my private pension since I was eighteen [he’s mid-thirties now]; I won’t even get to enjoy that.
Me: Of course you will!  You take care of yourself. Besides, medical research could change things so much in just a short space of time!
Him: Yeh.
Me: I could get hit by a bus tomorrow.
Him: But you won’t.
Me: But I might. Or, a tsunami could come crashing through and we’ll all drown.
Him: I don’t think that will happen.
Me: Oh, okay.
Him: I’m going to die … *pause* … I’m going to sleep now.

See, I’m rubbish.  My husband suddenly decided to worry about dying and I couldn’t come up with anything to console him.

Perhaps it’s because I’ve been constantly worried about him dying since he was first in hospital.  I’m resigned to my fate, but I don’t want him to be resigned to his.  It isn’t even as though we haven’t talked about his (and my) death before, so I’m struggling to understand where the topic came from so unannounced at such a late hour.  Perhaps something happened to someone at dialysis. I don’t want to pry.

But I wish I knew what to say to him when he brings it up again.

We went to the pub for lunch today and he enjoyed half a pint of beer (*ssshhh*).  That perked him up a bit!

silly billy

Blokey and I haven’t been away together since our first anniversary weekend in 2007.  It’s not that we haven’t tried, it’s simply that other things have cropped up.  Like an illness. 

Tsk.

I should have known something would go wrong when I booked a weekend away for our anniversary this year.

*grin*

We woke up at some ridiculous hour on Friday morning and, having packed our things in the car, we arrived at dialysis bright and early.  We ate toast and drank tea, and I read my book and enjoyed watching Nicky Wire and the new Manics video on BBC Breakfast.  With an hour or so to go, I toddled off for a walk and a spot of people-watching. 

When I next saw Blokey he looked like shit.  Pale, with big bags under his eyes and he needed to hold onto me to keep himself steady.  I don’t know how he got out of the dialysis centre without them spotting he was in such a bad way, but he did. The fact that his BP was fine (by his standards) probably helped.

So, we had lunch at the hospital, instead of stopping somewhere on our way to the hotel.  Blokey had a sip of my tea, but was worried about drinking because he wanted to enjoy himself and not think too much about fluid whilst we were away.

Yes, in hindsight I should have realised immediately that the silly bugger had taken off too much fluid and was incredibly dehydrated.  It wasn’t until we were nearly at our destination (only a hundred miles from home, but far enough for someone to drive who isn’t really up to it!) that he had a drink, and suddenly felt a little better.

In consequence, he felt like poo for most of the weekend, but I know he felt really bad about it.  Part of me was sympathetic, but another part wanted to shake him by the balls and ask him why he always insists on ruining our special time together.  That makes me feel like a complete b!tch, yet everytime we arrange something nice he gets ill.

Or maybe he always is ill and it only becomes more apparent when we’re away from our comfort zone.

That thought makes me feel even more of a b!tch.

Still, it was a delightful weekend.  We saw hills (we live in a very flat area of England) and gorgeous autumnal colours.  I spent a lot of time marvelling at how much the landscape in the UK can change in just a few short miles, and became mildly claustrophobic as I felt the hills closing in on me!  We saw squiggle-squirrels and attempted not to get hit by golf balls after posh breakfasts in an old priory.

And now we are home.

Blokey began using his fistula again on Monday.  He says it’s really painful when the needles go in.  I said had they not mentioned a cream.  He said no.  I offered to find out the name of it on ihd.com.  I forgot.

His Blood Baby has all but disappeared; once the blood began to disperse, it did so remarkably quickly.  And at the same time his dangerously high potassium levels have gone from heart-attack inducing to relatively normal.  A week ago they kept pestering him about his diet … we knew it wasn’t his diet!  Pesky nursing staff.

On Monday I oggled Nicky Wire (and the rest of the Manic Street Preachers) in the flesh. 

Yummy.

on being us

In the May of 2008, after just eighteen months of being wed, I came *this close* to becoming a widow.  Hindsight is both a blessing and a curse; it makes you realise what you must do should the need arise again, whilst repeatedly bopping you over the head with a stick which has the words ‘You should have known something was wrong!’ carved along the side. 

Blokey was a chunky chap when we met in the spring of 2002, but nothing a little exercise wouldn’t fix.  He was also a tired chap, but we put this down to the fact that he worked full-time, and then drove in excess of 150 miles on weekends in order to satisfy his insatiable girlfriend ;-). 

In the April of 2005 we bought a home together.  We have photos taken at my nana’s 90th birthday party that same month, and they show an incredibly pale and bloated man.  Despite everything that was going on around him that day (the sun was shining, the alcohol was flowing, the buffet was stupendous, my nephews and niece were creating mischief, the chatter was noisy) he managed to fall asleep, in full view of everybody. 

We should have known something was wrong.

Fast forward to the October of 2006 and we enjoyed an intimate wedding with our closest family.  In our photos Blokey looks tired and, again, bloated.  He’s pale and has (what he himself has termed as) ‘piggy eyes’.  In the afternoon, whilst I entertained our closest family and waited for the evening celebrations to begin, Blokey slept. 

We really should have known something was wrong.

Six months later my Father-in-law died, suddenly and unexpectedly (not kidney related).  On our first wedding anniversary my Mother-in-law was rushed to hospital with kidney failure*, but she recovered, fully.

Things can’t get worse, surely?

In the April of 2008 Blokey became ill. He was coughing a lot, and he had pains.  We assumed it was a cold/hayfever, or something similar.  But he got progressively worse, to the point where even walking upstairs was causing him to almost faint, and he slept on the settee.  After two weeks of this he finally admitted defeat and drove himself (I don’t drive) to Accident and Emergency at the local hospital.  He was diagnosed with pneumonia.  If he had gone to the doctors when he first became ill, it would have just been pneumonia.  However, his lack of movement had caused blood clots, and he was *this close* to leaving me to sort out funeral arrangements.

He was in hospital for two weeks.

We remember vague off-hand mentions of kidney failure, but nobody seemed too worried about it, so we put it to the back of our pretty little heads. 

Much of everything since then is a bit of a blur. He was definitely back in hospital in the October of 2008, but I can’t remember why.  Then in April 2009 he was hospitalised again; for two or three months he’d been suffering from fluid leaking from his legs, causing the most horrendous (and huge!) blisters.  At some point during this period a cholesterol doctor told him he was ‘just fat’.  There were notes at our local hospital and at another hospital where he was being treated but there seemed to be little communication between the two.

And then it became apparent he was allergic to an indigestion tablet he’d been prescribed since the summer of 2008; it was an allergy which probably cost him his kidney function early by speeding up the failure.

They were able to give him a biopsy (they hadn’t been able to in the past because he’d been so fluid overloaded) and pinpointed four problems with his kidneys.  They seemed hopeful, or he got his hopes up.  I wasn’t there most of the time, so I don’t know what they said to him or how much he twisted it so that he didn’t have to face the truth.

He was hospitalised again in the June of 2009, following standard (blood?) tests; his creatinine levels were sky-high and he was to go to hospital immediately where a bed was waiting for him.  The bed was in the room behind the nurses’ station, the bay they put you in when they really have to keep an eye on you.  Oh, he was shitting himself. 

Within days he was on haemodialysis. 

He last had a wee in September 2009.  He was still peeing for England (seriously, every morning there was a gushing waterfall in our bathroom – sometimes I expected to hear wonderful bird song) at that point, but a visit to the nephrologist cured him; he asked him to do a 24 hour urine test, handed him the big bottle and Blokey hasn’t pee’d since!  The bottle is at the bottom of our wardrobe, empty.

Blokey doesn’t have a fistula.  He’s had lines in his chest (we’re on the third line now), and in his neck.  In December he had a peritoneal catheter placed, but this didn’t drain properly so he had to have it whipped out and another put in. 

So, that’s where we’re at, and how we got here.  He’s trying to do peritoneal dialysis again (it’s not working very well), we have a kitchen cupboard devoted entirely to medication, and we’re waiting to hear if he’s been approved to be on the transplant list.  We both struggle, but for different reasons.  For the most part this dialysis lark is annoying and stressful and frustrating, but it’s a frustratingly annoying stress that we have learnt to live with, albeit not necessarily successfully.

*Recently my MiL was rushed back to hospital with kidney failure, and is – again – fully recovered.  The consultants compared her notes to Blokey’s and are of the opinion that kidney failure does not run in the family.  My MiL just wasn’t drinking enough.