the beginning

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!!!)

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Losing a kidney, but gaining a life (Part the Fourth)

NO DIALYSIS!!! Day Three:

I suffered the pain of Mumsy driving way too fast over speed bumps in order to pick up Kidney Kake from the Cake Shop.  When Tom (the owner/cake-maker) heard what I had done (Mummy, SHUT UP!!!) he let me have the two scrummily-delicious vanilla cupcakes I’d ordered for our fifth wedding anniversary absolutely free.  As he helped us to the car with Kidney Kake he then popped a bag of homemade buttery shortbread biscuits into the car, told me they were a gift for being so amazing, and then proceded to kiss me on the cheek!  Happy gosh!

NO DIALYSIS!!! Day Four:

Once again I braved Mumsy’s driving so that I could see Blokey and give him cake!  He seemed fairly happy, mostly because his urinary catheter and his neck-line had both been removed.  He was still connected to the drainage bag, collecting manky fluid from around Our Kidney, but he could live with that.  We swapped Happy Anniversary cards and discussed pain.  I tidied up for him (this is good; if I’m tidying it means I’m getting better.)

NO DIALYSIS!!! Day Six:

Blokey sent me a text telling me he would probably be out that morning.  Later he rang me in tears to tell me he didn’t think he would be.  He’d had an ultrasound scan and the (stupid) technician informed him that there was definitely fluid around the kidney still and this was a sign of rejection.

WHAT THE FUCK?! HOW DARE S/HE!

To say that I was very angry would be putting a very mild spin on the occasion.  His body will always attempt to reject Our Kidney, but to be given the impression that a newly transplanted kidney is showing signs of rejection and then not giving any advice or support or hope (because as an ultrasound technician you lack the qualifications to actually do so … oh wait, you also lack the qualifications to make an informed judgement!) is appallingly unprofessional behaviour.  Any information pertaining to rejection should come from the team of nephrologists because they can explain the whys and wherefores and how to solves. A calmer Blokey later rang me to say he’d finally seen the docs and they’d said it wasn’t anything unusual and he shouldn’t worry his pretty little head about it.

That evening he was discharged (he’d had bowel movement!) and his brother took him home to Mummy.

NO DIALYSIS!!! Day Seven:

Mumsy took me to my MiLs to visit Blokey.  Has she been smoking? I asked him.  No, she’s been very good, he answered.  She had put him in the single bed in the spare room though.  I thought this was a tad mean; he deserved a BIG BED!  But he was happy enough.  No docs prodding him, lots of Internet access, tellybox watching on demand and someone to keep him fed and watered.  What more could he ask for?

NO DIALYSIS!!! Day Nine:

Shortly before 10 o’clock there was a knock at the front door.  It was patient transport, come to collect Blokey to take him to the hospital for his clinic appointment.  D’Oh! Blokey had told them he’d need picking up from his mum’s for that first appointment, and had even seen that they had that written down. Stupid patient transport admin people!  Blokey’s aunty was able to take him in that morning, but patient transport did turn up at my MiLs shortly after they’d left.  *sigh*

NO DIALYSIS!!! Day Ten:

My fifth wedding anniversary gift arrived from Blokey (a whole week late, but he’s a boy so I couldn’t expect any better!) It was a Bonsai Tree.  Yay!  Something to kill!  Awww, bless him.  He brought it because it’s made of wood, and five years is wood.  It was relevant … plus I’d mentioned that I’d wanted one ages ago.  Of course, he’d forgotten to buy any Bonsai food or care bookage to go with it so I’ve had to spend my own money on ordering that, but no worries.  He’s promised me something spangly when we’re up to going out and browsing but I said that it was okay … we should save our money.

NO DIALYSIS!!! Day Eleven:

Blokey came home!  My BiL dropped him off in time for lunch.  I thought I would be happy and excited, but I wasn’t.  He was a bit miserable and negative and I suddenly had this overwhelming wave of despair crash down over me; I had to go upstairs and cry.  I could hear Mumsy talking to him downstairs.  Mumsy is SO GOOD.  She’s the BEST Mumsy in the whole wide world.  Whatever she said was enough to perk him up and make him more cheerful.  Then she came and gave me a hug too.  I understand that being home was scary.  I understand that I’m the one person in the world whom he can share his negative thoughts with.  I understand that he’s worried about Our Kidney rejecting.  But at the time I was still in a lot of pain and was also still hugely worried about everything too.  He needed to understand that we’re facing this together as a couple, not as two individuals with separate hopes and dreams.

NO DIALYSIS!!! Day Twelve:

Mumsy went home after watching me make a cup of tea and making me promise not to use the vaccuum cleaner.  Ha ha.

NO DIALYSIS!!! Day Thirteen:

We were rudely awoken by a knock on the front door shortly before 8am.  I stumbled out of bed and down the stairs (it’s amazing how easily one can forget pain when one has something to suddenly do) to answer it.  An elderly gentleman enquired if this was the right house for Mr. Blokey. I nodded sleepily and proclaimed, Oh yes! He’s just getting dressed … can you give him five minutes?  This was a lie.  The elderly chap (patient transport) went to wait in his car after apologising for being a tad early. Blokey got up.

NO DIALYSIS!!! Day Fifteen:

I had an interview twenty miles away. My wonderful Mumsy drove up to take me there, dosed up on strong painkillers.  I apologised profusely for being a little under the weather and declined the tour of the extensive facilities.  I didn’t expect to be offered the job.

NO DIALYSIS!!! Day Sixteen:

I had a phone call offering me the job.  We agreed I would start in January.  Go me!

NO DIALYSIS!!! Day Seventeen:

Blokey arrived at the hospital early for his clinic appointment and had had both the appointment and his bloods taken before his actual appointment time.  This was good.  What wasn’t so good was that he then had to wait for no less than five hours before patient transport was available to bring him home.  The reason?  They were waiting for an old man to be discharged from a ward and the people who transport for patient transport wouldn’t get paid for two separate trips so it’s not in their interest to be very helpful. Blokey is very much looking forward to driving again! Maybe it’s just me, but it seems insane that someone who is currently very fragile and vulnerable (in terms of his immune system) has to wait for so long in a hospital where he could pick up all manner of things!

NO DIALYSIS!!! Day Eighteen:

Blokey was given the nod to start taking his warfarin again.  This relieved him as it suggested that they didn’t think they would need to do a biopsy.

NO DIALYSIS!!! Day Twenty-one:

Following a clinic appointment in the morning one of Blokey’s nephs phoned in the late afternoon to tell him that his creatinine (the amount of creatinine, something which is normally excreted in urine, in your blood determines your kidney function; the higher it is, the naughtier your kidneys are) was down to 149 (in AmeriSpeak that’s 1.69 mg/dl).  This news caused celebration in the KatieF household because he’d been told they would be happy when his creatinine got to 150, although they would like it to get lower.  WooHoo! It had steadily decreased! He was also told to up his warfarin dosage.

NO DIALYSIS!!! Day Twenty-five:

A Bad News phone call on a Friday has the potential to completely spoil your weekend.  Please lower your warfarin dose, they said.  Then they told him that his creatinine had increased to 170.  Humpfgrrrhumpf.  Blokey panics and decides that the end is nigh; his body is obviously rejecting Our Kidney and he’ll be back on haemoD within days.  I panic, but have to be strong for Blokey and do the there, there thing, putting positive slants on everything.  It can be exhausting.  I pop online and read up about why creatinine levels might increase in newly transplanted kidney patients.  There’s slight relief that it appears this is a normal glitch. A positive cause of the glitch seems to be related to fluid.  Blokey has been limiting his fluid intake (with his nephs agreement) because they overloaded him with copious amounts of fluid whilst he was in hospital.  However, he’s lost an awful lot of that fluid but is still limiting himself.  I don’t think he’s drinking enough.  He agreed to drink a teeny bit more, but is hesitant until he speaks to his nephrologist at clinic.

NO DIALYSIS!!! Day Twenty-six:

Our first adventure away from FlatHickTown.  We went to the Village of my Childhood (sixty or so miles away) for a “Curry Night” in aid of a charity which sponsors Indian slum children.  Yummy-yum.  I worried about Blokey as he seemed to have lost colour and is looking tired.  I didn’t tell him that though, and I want to cry, lots.

NO DIALYSIS!!! Day Twenty-seven:

I had to scold Blokey for leaving the toilet seat up.  Huzzah!

NO DIALYSIS!!! Day Twenty-eight:

I woke up this morning at about four o’clock.  I couldn’t get back to sleep so I made a coffee, spied on my neighbours (it appears that the chap opposite gets up very early) and came online to update this blog.  Today is a clinic day and very soon I will be prodding Blokey awake and making him get washed and dressed, ready for patient transport.  Before he goes I will remind him to tell them he’s still limiting his fluid and that he’s had the sniffles over the weekend.  I am not a religious person but I will pray that even if his creatinine has gone up again (and we won’t know that till his blood results come back at stupid o’clock in the early evening; we will be waiting for a phone call) they will be able to offer advice and solutions.

All positive vibes will be gratefully received and stored in a safe place so that we can use them again at a later date, as and when required.

tits n’ pricks #1

I have expressed a desire to give Blokey my spare kidney. 

I read all the gumpf, skipped the DVD watching and read various websites.  And then I contacted the Living Donor Coordinator at the hospital where Blokey receives most of his kidney-related treatment. 

This past Wednesday saw us toddling off to the hospital to meet with her.  

She led us down long corridors to the strikingly bright and very uncluttered transplant ward, where she spoke briefly to us in a little room before telling Blokey to bugger off to the Day Room.

Have you ever had this, that and the other?,  she asked, before continuing with the Baby Talk and the Worst Case Scenario Talk.  You can withdraw from the process right up until the moment the anaesthetic is about to be administered, she explained. 

I signed bits of paper, and then began the testing.

the pricks

I gave up an armful of blood.  I didn’t look, but it was only a little prick and not as bad as I was expecting.  But there were a lot of vials of blood, and it was mine, and hopefully it won’t reveal any nasty surprises.

the pressure

My BP is near-perfect (120/78).  Phew!

the peeing

This was done in a big sterile pot.  Don’t put your fingers in the pot, she warned.  I complied, wrapping it back up in its plastic bag.  Was I supposed to pee in it so that it was nearly full?!  She went away with it and came back to tell me that it was okay; I have no protein in my urine. Huzzah!

being radiated

Take all your upstairs clothing off and change into this (*holds up blue tent*), and then have a seat and wait for your name to be called, said the x-ray receptionist when I went for my chest x-ray.  The chap didn’t ask me if I was pregnant, but did know where I’d come from.  I’m convinced he left me standing like a lemon for longer than need be after the deed was done.  I’m also sure that I moved and this made me ponder whether bones go blurry.

the tits

Take your upstairs clothing off and lie down, she said.  What, and my bra? I asked.  Yes, I’m afraid so, she responded.  After sticking things to me (which involved having to lift my sagging bosom) she covered my modesty for a smattering of seconds whilst the ECG did its thing.  Take this, and off you go, she barked, handing me a printout.  Miserable bint.

So, I have to go back on Tuesday just to offer a very small amount of blood to the God of Phlobotomy and from there we have a wait of a few weeks whilst they do all the tissue-typing malarky. 

And we’ll go from there …

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.