my turn to suffer

I don’t often talk about how I’m feeling on this blog. Not how I’m really feeling; I tend to keep that on my non-kidney blog. So this is me, opening up.

I’ve been completely and utterly overwhelmed recently. There have been tears. There have been moments of stupidness. I have been angry. I’ve toyed with ideas I’ve never toyed with before, ideas which I once was able to stick my chest out proudly and say, No, I’ve never thought of doing that! There has been emptiness, feelings of inadequacy and constant worrisomeness (deeper than that which I suffer with on a general day-to-day basis anyway). I couldn’t enjoy a few days with my Mumsy. I don’t even know if she noticed my lack of enthusiasm and chat, or if I hid it well. I’ve become quite adept at hiding the way I feel.

So last week I went to see my GP. It was both the hardest thing I’ve done (this year) and the best thing I could have done, in fairly equal measures. This week I’ve been much calmer and I’ve laughed. I don’t know if I would have laughed even if I hadn’t been to see my GP or not, but there’s a definite sense of relief that I’ve started a healing process. I’m being referred for counselling and he’s trying to get me to go on antiDs too, but I’m reluctant because I want to have a baby and antiDs aren’t good for baby. He did point out today (for he made me go back and see him) that the risks of not being on antiDs and becoming pregnant/having a baby may be worse than being on them. I said I’d think about it.

The nurse took FIVE!! vials of blood … He’s testing you for everything! she laughed. He is. He’s testing my thyroid, my kidney (haha!), my liver, and various youwantababyhealthcheck bloods.

I have to go back AGAIN next week.

He’s trying to refer me to the counselling service run by the transplant team at Hospital because he thinks their waiting list may be shorter than the one connected to my local surgery, but they haven’t yet replied to him. I don’t think this stems from the surgery. I think it’s been brought on – partly – due to the whole illness shebangle we went through, but it’s not the cause. I’ve always been melancholy, since childhood. I’ve had episodes in the past (most noticeably 1989ish, 1993, 2001 and 2005) and this time I don’t want to just wallow and not get treated. Maybe talking will stop it happening in the future.

I don’t know.

But I do know that this too shall pass.

(Day 864, NO DIALYSIS!!!)

on feeling useful

Blokey is happy.  He is so happy that I even remarked upon it last night.  This was a mistake; less than an hour later he was snarling and swearing at the little people on his computer monitor because his Star Wars: The Old Republic game was going wrong.

*sigh*

I’m wary of writing this (Fate does enjoy being tempted, I’m sure) but it’s a trifle odd.  At the moment Blokey takes his plethora of pills every morning and every evening.  He’s now down to monthly visits to the transplant clinic.  On the face of it, he’s doing remarkably well. Oh, and he can now drink! I don’t just mean alcoholic beverages, but also ANY fluid without us having to worry about fluid retention and toxic overloads.  It’s taken a while to get to the ‘I can drink whatever I want [except cranberry juice – not because of the transplant, but because of the warfarin] whenever I want’ frame of mind, but we have got there.  We’ve been to two weddings in the space of two weeks and he didn’t get sleepy, I didn’t have to prod him awake or nag him about fluid.  We were an ordinary couple enjoying ordinary days out.

He even popped off into work on Tuesday evening (a Bank Holiday over here due to the Jubilee) without grumbling about the forty mile round trip, because he needed to sort out the servers for the folk who are based in other countries.

He will always be ill.  A transplant is only another form of treatment and not a cure; we will always live with the knowledge that his body will eventually reject Our Kidney (although let’s hope Fate doesn’t want this to happen for a good number of years yet) and we are prepared for that as much as we can be.  I will never let his mother proclaim that he’s a) cured and b) no iller than she is ever again.  I will only allow her to say that when she has something terminal, which she no doubt will have, one day (you can’t smoke that many cigarettes and have that sedantry a lifestyle without becoming terminally ill, surely?  Although we all know how unfair Fate can be …)

I suppose I feel a tad redundant.  I’m not having to worry as much as I used to and instead of consoling Blokey in his woeful-ness I’m now having to keep up with the energetic man he’s become.  It feels – essentially – that he’s getting on with his life; he’s continuing with his OU degree, has a potential promotion in the offering at work and looks amazingly healthy compared to this time last year. I need to find my niche in this new dynamic. I’ve spent so many years worrying about Blokey that now I don’t have to worry as much I feel as though I’m floundering around.

See that lion pacing in his cage at the zoo?  That’s me, that is.  I know I want more out of life but I’m not yet sure how to get it, or even if Fate will deem me worthy of having it.

I feel a little bit lost right now.

(Day 233, NO DIALYSIS!!!)

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 …

quietly freaking out

As I watch Tanya pick up her surgical stockings and say, Sexy! I burst into tears.

The tears came from Nowhere, and they disappeared back into Nowhere within a minute or two.

Yesterday I spoke to my Mumsy.

Exactly one month! she proclaimed.

Yes, thanks! I laughed, in a non-laughing way, signalling that perhaps she should not talk about it.

I am not scared.  I have never been scared. Nope, I’m just ever-so slightly petrified, in a stopthinkingaboutitanditwillgoaway way.  But it’s getting to the stage where I can’t stop thinking about it.

Once upon a time, a very long time ago, there was a girl and she decided she wanted to give her husband the best gift of all, the gift of No Dialysis! No Fluid Restrictions! No Diet Restrictions! PIZZA! HOLIDAYS!  She decided to give him a juicy kidney, with love. But she forgot that the future has a habit of very quickly becoming the present, and the present soon becomes the past.

I coped with the Future.  I will cope with the Past.  It’s this Present situation which is becoming a trifle sticky.  I can feel that little knot in my chest, made up of worrisomeness and anxiety and fear and hope.  It’s bursting to get out.  And I’m going to have to let it out more in the coming days … I can’t rely on sad tellybox watching and use that as a cover for my blubbing.  I’m also going to have to admit to someone – anyone – that I am petrified.  But not my Mumsy.  And not my Blokey.  At the moment this semi-secret corner of the Internet is my one saving grace, and it’s likely that it will be a place I come more often in the next few weeks.

So much for this being a blog where I did nothing but grumble about haemoD …

Please don’t misunderstand me.  I am so excited for the future (although cautiously so).  But if there was a magic pill which made the Present whizz by so that it promptly became the Past I would take it. I would guzzle it down, not stopping to savour the bittersweet taste of it.  It probably doesn’t help that I’m hopelessly unemployable at the moment; at least with work I would have the opportunity to forget about the transplant for a few hours a day.  Dollhouse, Buffy and Big Brother are brilliant for wasting hours upon hours, but they don’t quite drown out that new little niggle in my head, and my throat, and my chest …

I’m trying to ascertain which aspects of the transplant are freaking me out and which of them I’m more comfortable with.  I feel a more indepth look at my woes and tribulations will have to wait; Blokey will soon be home from haemoD and he’s had a shit day (what could I  do but send text *huggles*) so he’ll be needing love and attention and my ear.  I will probably get irked when he talks over Armstrong’s witty banter on Pointless and he will probably get doubly-irked when I prod him and say, Oi! You’re talking over Armstrong’s witty banter on Pointless!

(29 days)

life v. death

Blokey has been on the transplant list for nearly a year now. It’s not something I often spare a thought for, although I acknowledge that we might get a phone call at any time and that’s a tiny little thought which lives quietly in the back of my head. I think that we’re both quite sure that I’ll be donating a kidney before he gets The Call.

But sometimes something happens, or I see a news item, and I realise the true implications of being on The List.

Someone has to die in order that my Blokey gets to live.

Blokey spends his time teetering along the edge of life whilst somebody else gets to live life without having to worry about survival. But in a cruel twist of fate, that person will end up saving my Blokey’s life. Another young wife may have to suffer in a way which I never will (*touch wood*) when she unexpectedly loses her husband and makes the decision to save the lives of up to eight people (and potentially transform the lives of many more, plus their families).

There’s a plethora of feelings that come with this realisation. Guilt is a Biggie. And sadness. I’m not sure that I can muster the inevitable happiness at this moment in time. The whole thing just makes me feel so wretched.

It just seems so ironic, especially when you realise that even with a transplant Blokey will still simply be teetering along the edge of life

Wow, what a miserable post!

*grin*

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.)

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.

blokey vs. haemoD

He wants his life back.

With PD he thought he was getting it back.  No more thrice-weekly trips to the hospital.  No more having to watch Not Nice Very Dim eating burgers and crisps whilst guzzling brown pop.  No more hours of tedious boredom, with no working tellybox and nurses who ignore him.  A working week where he arrived home at a ‘normal’ time, and not some ridiculous hour shortly before the clocks chimed midnight.  Even (possibly) being able to drink a little bit more, and not be so strict with his food intake. 

But he is Blokey and Life is against him.

(in his woe-is-me moments I hear that a lot)

There are other reasons for wanting PD over haemoD.

He has seen the (often constant) pain that some people (with fistulas) seem to suffer from; he’s heard their screams and watched them cry.

He is desperately afraid of needles. 

(but he injects himself in the belly weekly)

He doesn’t want a fistula.  I’m not sure if this is because it looks unsightly, or because he associates it with never getting his life back.  Or maybe he associates it with pain.  I doubt he really knows himself.  He (possibly rightly) assumes that if he goes back on haemoD he will be coerced/forced into having one and that simply scares the shit out of him.

With PD he can leave work at the time he’s supposed to leave, and not the hour earlier he has to leave three times a week whilst on haemoD.  He really worries about his job (he’s been working for the same company for ten years come August and survived however-many rounds of redundancies).  It took him nearly a week to tell his immediate line manager that he was on the transplant list because he thinks that come the next round of redundancies it will be held against him.

But he knew it was only a matter of time, and earlier today he phoned me to say that it’s happened; they’ve thrown in the towel and he has to go back on haemoD immediately (tonight). 

I’ll be honest, the first thought that crossed my mind was, But I’ve just been shopping and bought oodles of food!  Gah!

(when he’s on haemoD he eats main meals at work three times a week)

Blokey is trying to convince himself that they haven’t done enough.  In truth, I don’t think they could have done anymore.  And I think he knows that, deep down.

He’s going to be miserable when he gets home tonight and I won’t know what to say to him.  Anything I say will be misconstrued.  He thinks knows that I gave up on PD a long time before the hospital did.  If I suggest that it’s good because he’ll actually get a whole nights sleep (he hasn’t had one since he went on PD) then he’ll twist it in his head so that he understands it to mean I’m glad because I’ll get a good nights sleep. 

At least you’ll get your cupboard back! he said to me.

But I’m not fussed about the cupboard.  I’m not even fussed about the machine with its whirly-beeps.  However much I hated PD (because I knew it wasn’t working and he was more miserable on it than on haemoD) I did love the fact that we got home at about the same time every evening.  I loved the chats we had whilst he was doing his manual, and going to bed at the same time (he tends to stay up much later than me) which meant we indulged in more quality time together. 

I will be glad to see the back of it because of the exhaustion and the miserableness that it’s caused for both of us.  But I’m not happy that my husband is unhappy and feels that he’s lost his life again.

But I don’t believe the PD ever truly gave it back to him.

*sigh*

::edit::

I just posted this on IHD, but thought it probably fitted quite snugly into this post as well … he rang me just as I hit the ‘publish’ button …

“I would rather die … than be sat here waiting to go back on haemoD.” I know he didn’t mean it and only said it because he’s p!ssed off, but it’s a horrid thing to have to hear your husband say on the phone.  It took five minutes for it to hit me and then I just burst into tears. The thing is, I’m not sure if they’re (partly) tears of relief.  Today Blokey was told that the PD definitely isn’t working and he has to begin haemoD immediately, tonight.  So, yeh, maybe I’m relieved (we are both so exhausted, and he has been so miserable on PD) and the tears are a part of that as well as what he said. To put it in context, he got to the hospital after work and they thought he wasn’t supposed to restart till Monday.  He was going to come home but they said that as he was there he may as well stay but it would be half an hour before a machine was ready.  He’s seen three people come in and get straight on (I did point out that he wasn’t expected and they were), he has no money to buy a magazine, he can’t watch the tellybox because his headphones are here at home, and he hasn’t drained his extraneal.  On top of that he is really upset that PD didn’t work for him. This may be a rocky weekend … (but my tears have buggered off, yay!)

peritoneal vs. haemo

For the last six weeks I’ve spent every single day listening to the grumbles of Blokey.  Sometimes it breaks my heart, and sometimes I just want to grab him by shoulders and shake something (sense?) into him.  During this six weeks I don’t think either of us have had a full nights sleep, which is partly due to the whirring/alarming of the peritoneal dialysis machine and partly because we’re worried about it.

This is Blokey’s second attempt at peritoneal dialysis.  His first attempt failed miserably because the catheter wasn’t placed properly and so had problems draining fluid.  Following its removal, and the insertion of a new catheter, he once again began PD. 

And I wish he hadn’t.

I feel very selfish.  I also feel as though I’m betraying him somehow.  He really wants PD to work.  He wants the freedom that it offers him.  Instead of going to the hospital (he has to go to one further away from home because our local hospital doesn’t offer twilight dialysis and he works full-time) three evenings a week, he can come straight home, do a manual exchange and then hook himself up overnight. 

It sounds ideal.  But it isn’t.  Not for me, anyway.  For a start it isn’t working.  The exchange he does when he gets in from work should take a maximum of thirty minutes, but it takes about an hour because it’s draining so slowly.  Then overnight we should just let the machine do its stuff, but it isn’t relieving him of the required amount of fluid.  Since being on PD he’s had countless tests, a couple of x-rays and even two haemodialysis sessions to get the excess fluid off him.  He’s currently 6kg over his dry weight, and he barely drinks.  His levels aren’t right either, but he appears to be fine.  The doctor wasn’t even worried about the excess fluid he was carrying because he was ‘carrying it well’, whatever that means. 

Every day is a constant struggle, with Blokey either nearly in tears, or displaying anger because he thinks that the hospital are washing their hands of him/fed up with him. 

And I just don’t know what to say to him.

Even if the PD were working, I think I would prefer him to be on HD … 

I now consider myself a ‘caregiver’ but that was a term I never even thought about using whilst he was on haemo.  Maybe because with HD the whole dialysis process was hidden from me; it all took place away from home and I didn’t have to come to terms with it.  Now I feel as though I am very much involved in the dialysis he receives.  I was always interested in it, and I always listened to him when he spoke about what went on and who said what, but now it’s very much in my face.

Boxes!  My house is breeding them.  I would like to be overdramatic and proclaim something along the lines of, ‘they’re everywhere!’ but that would be a lie.  They actually all live in either the shed (given to us free of charge by the NHS) or in the cupboard under the stairs.  That’s our weekend job … shifting a weeks worth of boxes from garden shed to cupboard.  It just feels as though they’re everywhere.  And they all have to be broken down and put out for recycling. Not to mention the plastic which keeps all the bags sterile.  I’m not that house proud, but I can’t stand mess.  Boxes = Mess.

Then there’s the toilet issue.  We only have the one loo and our bedroom is along the hall rather than right next door to it.  So we have to have a tube trailing from the bedroom, along the landing and into the toilet.  Ever since Blokey forgot to put the tube into the toilet I’ve chosen to stay up till he goes to bed so that I can make sure the fluid is going to drain into the loo and not all over the floor.  The one time he forgot could have been worse; he remembered within minutes so there was probably only a litre of belly-fluid over the floor which was far better than waking up in the morning to discover maybe 8 plus litres soaking through the ceiling.  One day it will happen, I’m sure!  This also means that having people to stay is uncomfortable, mostly because who wants to visit someone and pee into their loo whilst they’re draining fluid into it, but also because someone might trip over the tube and fall down the stairs (I’m waiting for that to happen to me).

Which brings us to the question of going away.  On HD we can go away for weekends without worrying about taking anything other than his medication.  Blokey does did HD on M/W/F evenings so last summer we had a couple of nice relaxing weekends away.  But on PD it would mean lugging his machine (which is heavy) and however many boxes of fluid, plus the medical waste bags, cartridges, clips, extension tubes, proper hospital soap and wipes, and all the other little necessities that make PD work.

*sigh*

I just think that if Blokey were back on haemodialysis life would be much calmer.  Perhaps it wouldn’t be such an issue for me if the PD were working and he was happy.  But it’s the fact that he’s unhappy which makes all the above seem so HUGE in my head.  It’s getting to the point now where I’ve started to make snappy-snide comments whenever he gets negative about it, and I really hate the Me that I am at those moments in time.  I don’t ever want him to feel that he’s a burden to me.

I just want Blokey to be happy, and however much he does hate those 3 nights a week hooked up on HD at the hospital, he was far happier then than he is now. 

*sigh*