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.

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4 comments

  1. I know what you mean about the man going in to see the doc, and then he comes out and you wonder later… what did they actually say in there? What has he “forgotten” or ignored? Mine is the same, and his capacity to decide that things aren’t really happening is scarey.

    Did you find out what the cause of the kidney failure was? (Gregory never found out).

    I must rush out the door, will come back later and tell you his kidney failure story.

  2. We were told it was nephrotic syndrome; he had very foamy urine, and urine tests showed he was passing lots of protein. But because they didn’t seem too worried at the time, we weren’t worried. It seems silly now. I think we just both stuck our heads in the sand and didn’t want to face reality.

    I do partly blame the doctors. I know we’re an intelligent couple and fully able to do our own research, but they didn’t really explain the implications and what we could do about it. Or again, they did, but I wasn’t there and don’t know about it.

  3. Gregory has been peeing a lot lately. I look in the bowl sometimes when he didn’t flush, and think, now… does that look foamy? Its a worry. I saw your comment in IHD the other day about how you worry that Blokey will go before you do. I get sad sometimes about the same thing. Unless I am hit by a bus or something ridiculous happens, it’s G who’ll go before I do. Still, I cheer myself up by noting: if I went before him, that would be far worse!
    Who’d tell him what to do?

  4. Ha! Blokey hasn’t got a clue how to use the washing machine. Or the vaccuum cleaner. He probably doesn’t even know where I keep the clean sheets for the bed. He’d be lost. Still, I’ll be more lost without him … I leave the mortgage and the Internet to him. And he fixes my computer when it goes poohf! *sigh*

    I received that thing (< braindead … it's the weekend; I don't need to think!) you want me to sign btw. I'll get that in the post this week. 🙂

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