Kidneyversary

Today is our two year kidneyversary.

Whoop!

Yesterday I was a bit of a bitch to Blokey.  I make him sad and I make myself sad.  I’m going to get it rectified.  I tell you only so you don’t think we live a life of bliss.  The life of unbliss isn’t connected to the donation and transplant, but sometimes life isn’t all harmony and roses.

But today is a HAPPY DAY!  At this moment two years ago I was drifiting in and out of consciousness.  It becomes more surreal with every day that passes and sometimes I’m convinced it happened to somebody else.

As it’s also our wedding anniversary on Monday, we’re going out to our local Indian restaurant for a tasty celebratory meal tomorrow night. I might even get tipsy.

Blokey had a three-month clinic appointment on Wednesday.  Delectable Dr. Neph, Phwoar! told him to cut one of his anti-rejection drugs (the CellCept I think) from 750mg twice a day to 500mg twice a day.  There is no reason for this other than the length of time since the transplant.  In a month he has to see the nurse at our GPs surgery for a blood test; *fingers crossed* the decrease doesn’t mess with Our Kidney … I know they wouldn’t decrease it if they were worried, and that the decrease is a good sign, but it’s still a month of worrying until he has his blood tested and the results come back in!

The nurse at the clinic checked his moleyness for signs of cancer.  All is well there, too.

Phew.

I need to have my two year check-up soon.  I think I’ll get my smear (*yuck*) out of the way before I arrange that.  I can’t have too many medical things going on at once.

Anyhoo, here’s hoping for many more years of blogging about kidneyversaries!

*smile*

I got flowers from the love of my life today.  Feel free to enjoy them with me …

 

 

 

 

 

 

 

 

 

(Day 731, NO DIALYSIS!!!)

existence

Things have been plodding along quite nicely in the last few weeks, giving me nothing to snarl and whinge about. Oh, it has been hot the last few days (it makes a change from rain, but I would rather be too cold than too hot) which has resulted in me nagging Blokey about his fluid intake, or lack thereof.  He insists that he’s drinking enough, I don’t think he is … Still, his funeral, eh?  That’s the only way I can look at it; I can’t force him to do anything so any consequences will be his fault.  We’ve even managed a long weekend away on the south coast with the only worry being whether or not we packed those damn tablets.

We have a new monster bundle of fun fur.  He’s teeny (twelve weeks) and quite scratchy (what are these? claws? oooh, do they make you yelp?  i like-y making you yelp!) and so now I’m convinced that at Blokey’s next Hospital appointment (they offered him two months, he respectfully declined and asked for a month … two months with no Hospital? Yikes!) they’ll discover he has nasty cat disease in his blood.

I think I’m wary about writing here when things are going well.  I do have a tendancy to tempt Fate (as proven by my last two posts) and I’d rather not be the reason Blokey starts having any issues.  But – having said that – I do want to let you in on a little secret.  I’m amazed (truly amazed) that the transplant worked.  I gave Blokey Our Kidney even though I was sure something would go wrong.  I see and read of so many donors (oh, and do I have an irky post lined up about non-directed altruistic donors, but that’s by-the-by and won’t be written until I don’t sound like a complete b!tch) who are full of positivity and yay! look at me, I’m so wonderful, everything is going to be brill! vibes, whilst I went into it quite negatively. That’s how sure I was about Blokey’s Fate.  And yet, I still did it … Go Me!?

Of course, being a glass half-empty kind of human being does tend to help somewhat in these situations.

I would like to take this opportunity to thank the NHS for the free sunscreen lotion.  I ♥ you, NHS.

(Day 282, 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!!!)

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.

prioritising

Blokey has an appointment to see his nephrologist, Dr. Sanj [not his real name] on Wednesday.  He’s been attempting to keep a list in his head of his main Dialysis Grumbles.

He has three Very Important Issues he’s planning on bringing up.

To get us (you and me) into the spirit of the occasion I’m playing the Top of the Pops (musical chart show of all the top tunes which used to be on until the www and its downloads spoilt the whole shebang) theme tune.   We’ll use the ’86 to ’89 theme (don’t forget to clicky!), because that’s when I was a teeny-bopper sitting in front of the tellybox taping my favourite songs onto dodgy cassettes.

And at Number 3 we have …

Hook Me Up, by the Veronicas

The Blokey works full-time.  He works because to not work would do his head in, and because I like having money spent on me but am a lazy b!tch who only wants to work part-time.  He therefore does the twilight session MWF, because he likes having his weekends free (to spend with me, perhaps.)  He does dialysis for four hours, and once it is over he has a twenty-eight mile (forty minute) drive home.  When he was on for less than four hours he was told that four hour people got priority.  Fairy snuff.  But, when he has to go to four hour sessions, the goalposts seem to change.  It irks him muchly, that those who do less time and have less far to travel (and who don’t work) get the priority.  This is something to do with the fact that they now have a designated bed (where they didn’t before) and so obviously if the previous occupant was late, this holds up the next one.  Previously, they were called in on a first come, first served basis, making themselves known when they arrived.  It seemed fairer to do it that way; Blokey knew that if he was late, he would get put on late.  Now, he can be the first one there and the last put on, just because of Designated Bed Syndrome.

*sigh*

And at Number 2, give a big cheer for …

Transvision Vamp with, If Looks Could Kill

There’s a woman.  She’s old(-er).  And she annoys the dialysiz kidz.  When you go into the Dialysis Centre at A, there’s a long corridor off which there are two wards.  One ward just has the one entrance.  The other ward has two entrances.  Everybody traipses up to the second entrance, where the weighing machine is.  This one woman opts to ignore the weighing machine (I’m not sure how she gets away with not weighing herself) and slips in the first door to the ward.  The nurses smile, ‘Oh, hello Rosemary!’ [not her real name] and get her hooked up.

Katiefinger receives moan-y texts, and imagines eleven grow’d ups muttering under their collective breath whilst giving Rosemary evil looks.  By rights, she should be dead (if looks could kill and all that …)

I know you’re dying to know what’s Number 1 … Get ready to mosh with Weezer and …

Sandwiches Time

Yes.  Blokey’s top grumble involves the sandwiches.  Refreshments come around twice at the dialysis centre.  Tea (or juice), biscuits and sandwiches.  Every morning they get a big delivery of various pre-packaged sandwiches.  Blokey has been lucky enough to do dialysis on each shift, so he is aware that those who are Early Birds get toast too.  But as well as toast they get the best pick of the sandwiches.  By the time the twilight shift rolls round the sandwiches have reached a sorryily pathetic state, with just the dregs that nobody likes.  Obviously they get eaten.  Hungry boys will eat anything.

But what really got to Blokey last week was Gerry [nope, not his real name].  Gerry is a forty-year old man who is brought to dialysis by his dad.  He’s a little bit backward (or just veryveryveryvery spoilt) and is usually never found far from food.  If he’s not munching on burgers, he’s stuffing his face with sausage rolls.  He usually brings his own sandwich in, and has been known to spend entire sessions eating grab bag size (bigger than normal, not quite family size) packets of crisps. 

[An aside – Gerry has been on dialysis for about four years and prior to this he had a transplant which lasted thirteen.  One day Daddy Dearest waved a banana and a grab bag packet of crisps in front of a nurse and asked her which one would be better for Gerry … yikes.]

So on Friday, Gerry was happily gorging on his own food and Blokey could see the refreshment trolley zig-zagging backwards and forwards along the ward.  He already knew the sandwich choice was diabolical, so was all geared up for disappointment.  However, his disappointment was to become even greater; Gerry got the last sandwich.  Gerry was eating his own sandwich when he took the last sandwich.  Gerry is a pig. 

I have to be honest, it did amuse me that three seemingly trivial things were so high on Blokey’s Must Tell list of grumbles.  But having reflected upon them, I’ve realised that of course these are the most important things.  They’re all as important as that must-have tea-break at work or the need to kick your shoes off the minute you get in the door.

I must try harder not to be amused by not-so trivial things.

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.

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*