living donor

the results are in …

So, I finally have the results from my two year (and three month; she’s not on the ball, my LDC) post-donation tests. I’ve also included the one year results in purple.

BP 131/78 (120/76)
Hb 117g/dl (I’m assuming that’s 11.7g/dl otherwise it’s very much increased since last year!) (12.1g/dl)
WBC 8.6 (7.0)
Plt 293 (209)
Na 138mmol/l 140mmol/l
K 4.4mmol/l (4.7mmol/l)
ALT 20u/l (I don’t think I was tested for this last year)
Urea 7.4mmol/l (5.3mmol/l)
Creatinine 60μmol/l (0.68 in AmeriSpeak) (76umol/l)
GFR >60 (79)
No blood or protein in urine dipstick and all other urine tests normal

The recommendations at the bottom (this is the letter which is sent to my GP) state that my blood pressure only just falls into the category for LKDs. *sigh* … my blood pressure has always been so perfect.  My Full Blood Count bloods Red Blood Count is 3.78 so falls just below the normal range, as does my Haematocrit which is 0.345.  They’d like these repeated the next time I’m visitng my GP.

*another sigh*

Other than that I think I’m in fairly good physical health. Mentally, maybe not so …

(Day 855, NO DIALYSIS!!!)

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and the results are in …

I wrote the following back on the 6th January. I didn’t post it, not because I didn’t want to but because I thought I had.

“Yesterday I finally received the results of my Hospital check-up (only two months and a couple of days after the Event itself.)  I am pleased to report that having Googled all the results I *think* I’m pretty much the perfect specimen of Human Being-ness, with my remaining kidney behaving as it should.

*takes a[-nother] bow*

(Day 346, NO DIALYSIS!!!)”

I *think* that I toddled off to check that my results were good before I posted what they were and looked a complete plonker when some wise person pointed out that actually they were a tad skewy.

These were my results:

Blood Pressure 120/76
MSU – normal
Hb 12.1g/dl
WBC 7.0
Plt 209
Na 140mmol/l
K 4.7mmol/l
ACR <0.6mg/mmol
Urea 5.3mmol/l
Creatinine 76umol/l (equates to 0.86 in AmeriSpeak)
eGFR 79mis/min

I was a trifle worried about the eGFR but it transpires that I don’t really need to be.  My creatinine is near perfect (I think) and they tend to go by this more (I think, again … I’m full of thinking today).

I go back for the second anniversary in October and then I’ll just have to pop to my GP and request renal function tests for years three and four.  Year five I’ll be back at Hospital to see the living donor team again.  I have no idea what happens at year 6 …

I also have no idea what most of those results above mean, but hey-ho.  Life goes on.

We’ve been away this weekend, sampling the delights of the Norfolk coastline and the joy (ha) of spending time together. I realised that I still worry about Blokey’s peeing ability.  I went copious amounts of time and he went once (during the day). I expect I’ll always worry about it, which is just another sign that we’ll never be completely free of this; we’ll always be expecting the worst to happen because one day it will happen.  We can’t escape that. But won’t it be lovely if it doesn’t happen for thirty years and by the time it does happen some new-fangled research has made life with no kidney function to be a doddle?

*fingers very crossed*

(Day 474, NO DIALYSIS!!!)

Checking her out …

I toddled up to Hospital this morning.  It seems an age since I was last there (April I believe, to visit Blokey after his hernia operation) but nothing had changed; it smelt the same, looked the same and had the same (but different) wide-eyed, confused-looking patients and visitors bumping into each other in corridors full of original Quentin Blake murals and fighting for space on non-broken down lifts.

The Living Donor Lady and I chatted about my experience. She made notes about the pain and the worrying incessently about the minor details. I told her it felt surreal, as though it never really happened.  She explained the notes helped them to know what to say to other potential living donors and they get sent to BT.  This surprised me; why do British Telecom want to know about live kidney donation? It transpires that she was talking about NHS Blood and Transplant. D’oh!

She called the living donors who profess to have no pain, bastards!

*gasp*

Oh, she likes to swear. Later, as she attempted to steal my blood from a deep vein which had no intention of playing, she said that she didn’t want to have to fuck around when she was in there (my vein, I assume). I apologised on behalf of my naughty vein, and wondered if her mouth would have been so dirty if I were older. Not that I minded; it just struck me as oddly funny because she’s a professional. She only took two vials of blood, which disappointed me a little.

My blood pressure is a perfect 120/76 (*takes a bow*) …

She has my wee too.  Three little samples of ‘first void’ mid-stream wee. I think she was a trifle irked when I said that I was on my period because apparently it affects the results. Well, gosh.  She said she’d label it appropriately, but didn’t request a re-sample on a non-period day.  Can’t be a Biggie then.

I go back next year, to the same Hospital because it’s my local. Apparently in Years 3 and 4 I just have to visit my GP for a general check-up and can ask for a renal check if I want one.  I’ll then be back at Hospital in Year 5 for a good seeing to. If this coming year goes as quickly as the previous I’ll be a bit annoyed. I want to enjoy life now, not have it whizz past at an extortionate rate …

(Day 379, NO DIALYSIS!!!)

the kindness of strangers – a review

We do many things differently in relation to other countries (and by other countries, I mean the USA) when it comes to needing a kidney.

Both countries have The List. I’m led to believe that in America it is quite literally a list.  You begin lower down and work your way to the top.  You can be listed at different hospitals/transplant centres and in different states, which seem to have differing wait times; there is no national List. Depending on different factors (such as accrued time) you may begin further up the list than someone else.  Once you start getting phone calls saying there’s a viable kidney available, you know it’s only a matter of time before you get yours.  In the UK an available kidney goes to the best matched person (with factors such as distance taken into account) on The List, whether that be someone who’s been on it six years, or someone who’s been on it a matter of weeks (in some known cases, just days).  It is a national List, incorporating the whole of the UK and you don’t know when That Call will come.

My understanding is that in the UK you only become active on The List when you begin dialysis; your only option for a pre-emptive transplant (to save you from beginning dialysis) is if you have a living donor.  However, I may be wrong.  In America you can become active on The List before you need to begin dialysis.

One major difference with kidney transplants was highlighted by the ITV programme Tonight: ‘The Kindness of Strangers’.  Whereas the UK only allows non-directed altruistic donation, America actively encourages directed altruistic donation.  What does this mean?  If you want to give someone the amazing gift of a life free from being tied down by dialysis in the UK, you offer your kidney to The List and the best-matched, most suitable person is found.  You don’t get to hear ‘their story’, you don’t get to know how old they are, what religion they may practice, the reason they’re needing a kidney or the colour of their skin.  Essentially, you don’t know anything about them.  You aren’t making a judgement, playing at being God or having your heart-strings tugged into submission.  You aren’t making a decision to donate to someone based on a subconscious, deep-rooted issue, or a biased position; you’re making a decision based on wanting to do what’s right*.

The United States is a completely different kettle of fish.  Social media has become the norm for kidney-seekers.  I’ve grumbled about it before; the begging YouTube videos, the heart-wrenching (gut-churning) Facebook pages, the I’m better than anybody else who ever needed a kidney and I’ve done nothing to deserve having YOUR kidney but think you shold give it to me anyway because I have children/I’m young/I’m intelligent/I’m beautiful/I can play the guitar (delete as appropriate) tweets. This isn’t to say that all kidney-seekers in America fall into the ‘begging’ trap.  I know there are responsible people who use social media as a tool for finding their perfect match, but they do so in a controlled way, carefully stating the facts and using the opportunity to educate those who are ignorant and want to know more so that they can make an informed decision instead of one based purely on sympathy.

Regardless of how they go about it, it saddens me that American individuals have to resort to this.  And I truly hope the idea doesn’t catch on over here, but my fear is that it will.  Tonight: ‘The Kindness of Strangers’ was partly about the American not-for-profit (um, so why isn’t it free to register like livingdonorsonline.org?) site MatchingDonors dot com which is being introduced in the UK because it’s been so successful in America (apparently, although statistics were lacking) and they can see the need for it here (despite the fact that nobody has yet been allowed to receive a kidney from a live donor who they don’t actually know in the UK, not including paired donation).  The premise of the site is that you pay an extortionate amount of money to create a profile explaing that you need a kidney and why, and then wait for the offers to come rolling in.  In Britain the site appeals to those people who want to donate but don’t want it to go to just anybody (as evidenced by the two young British women) and those who don’t want to go on dialysis (does anybody?) but have nobody who matches or is willing to donate before this happen, as evidenced by Saira.  Saira was a youngish mother.  My heart was being tugged. Truly.  Saira’s problem was that she’d found a willing American donor but was unable to find a hospital in London willing to do the transplant.  Then she did.  But it left a lot of unanswered questions; would the American woman’s insurance pay for her to come over here, have the operation and the time needed for her to recover?  If the HTA still have the final say, what will happen if they say ‘No!’ at the last minute?  Is Saira going to feel any obligation to a person she barely knows?

I am uncomfortable with the idea of directed altrusitic donation.  It leaves a bitter taste in my mouth; you’re giving someone with compassion the chance to unwittingly play Judge, Jury and Executioner. I like our system for its simplicity; the most deserving recipient of an altruistic donation is the one on The List who is best matched for that kidney. By following the American path are we turning kidney donation into nothing more than competitive entertainment?  Who can create the saddest backstory?  Who makes us laugh the most?  Which would-be recipient is more at death’s door? Kidney Factor, Britain’s Got Kidney, Kidney Hunt, The Kidney is Right, Big Kidney … let’s just turn it into a peak-time entertainment show and let the audience decide …

But ultimately, should we be following this path or should we be educating people about donating their organs upon death? Should willing donors be faced with making such a decision as to which stranger gets their gift, or should we be encouraging more people to consider non-directed altrusitic donation by giving them true and relevant facts and figures?

Shirley Rae got it spot on when she said (and I paraphrase), there are hundreds of healthy organs being burnt and buried in the UK every year … this should be our primary focus.  Let’s consider an opt-out system or at least review the idea that family can overturn a deceased’s decision to carry a donor card and be on the donor register.  I read somewhere that a whopping percentage of families regret their decision not to allow their loved one’s organs to be donated upon death just two days later.  How lovely … but not quick enough.

* I realise that in many ways this contradicts my previous post but I would like to reiterate that that post was based on a couple of statements made by non-directed altruistic donors which were probably portrayed out of context by the media; I do think more people should be encouraged to think about living a life with one kidney and should feel free to do so without having to worry about the other person …

the bitch-tastic post

I am an enigma.  Or I’m not.

Take yesterday … I was sitting at work randomly checking the news before heading off for home and discovered that twenty+ children had died in Switzerland.  I nearly blubbered like a baby, but stopped myself because blubbering like a baby at work would be a trifle bewildering for my colleagues.  The thought of the tragic accident, the scariness for those involved and the awful wait for news by families back home made me an emotional wreck.

Forward through to today and I clicky on a linky posted by Living Kidney Donation on Facebook.  Instead of becoming emotional at what I was reading, I began to snarl and grumble.

This leads me to the realisation that I’m a bitch.

The post read (in my head): I’m a [whinging] mother of two little kids who suddenly developed kidney failure last year and didn’t keep my PD access site clean so ended up in hospital.  I had to wait a week [i don’t think so, petal] to have a neck line put in so that I could have temporary haemoD.  I was lucky enough to have a whole two (yes, TWO!) people offer me their kidney, but neither was a match.  My husband [you don’t say if he offered you his kidney] set up a Fb page for me but nobody else has offered.  Oh, woe is me.  Please give me your kidney; I am more worthy than the little old lady (because she is old) and the childless (because obviously their lives have no meaning) and those who have been waiting for years (why should I have to wait for what should rightfully be mine).  Oh, and before I forget, here’s a little poem my daughter wrote so that you’ll step up and give me what I want because the tears won’t stop streaming down your face.  Won’t someone please think of the children!!!

This sort of thing really irks me.  I do have sympathy for other people who are living with disease, most particularly kidney disease and failure because I understand first-hand (from a second-hand point of view!) what they’re going through and what they need to do in order to keep surviving/living. But this whole begging for something leaves me feeling queasy, and social networking online has made it very easy to beg.

I don’t know why I feel so uneasy and annoyed about this.  Perhaps it’s because I was taught (through experience of poverty) not to ask for something that seems out of reach.  Maybe it’s because I believe that if something is going to happen, it will happen regardless of how much effort you put into it.  It could simply be because I know of people who don’t have the supportive network to be able to achieve this themselves and it feels like those who do/can are rubbing their supriority in the faces of those who don’t/can’t.

There are thousands (and thousands and thousands) of people around the world who are in desperate need of a kidney, and I don’t believe that any of them are more important, or more deserving than their kidney-failure-neighbour.  You don’t become more deserving because you’re only in your thirties, or because you have precious children, or because you have a better job.  You don’t even become more deserving purely because you’re able to tell your story in a heart-wrenching way, emotionally manipulating people into making what would inevitably be one of the biggest decisions they will ever have to make.  You don’t become less important because you’re working class, or told a fib when you were seven, or forgot to say ‘sorry’ once for a minor misdemeanor.

I wonder if either of the two (yes, TWO!) people who weren’t a match offered their kidney for non-directed altrusitic donation, or for a paired donation.  I even wonder if the woman in the article knows that some people don’t get offered a kidney ever, despite large and loving families and big friendship groups.

I think my biggest twirlypop is that it just seems so unnatural to be all feisty; I’m a very private person.  GiL (who will now one day become SiL due to her recent engagement to BiL) was urging me to contact all the magazines and newspapers, wanting me to receive national praise for my heroic act of love and devotion.  But I’m not a hero, and I donated my kidney out of love, not a need to be praised, or thought of as a better person.  In my new job nobody (except the interviewers and the OH nurse) knows that I’m a donor and I want it to remain that way as long as possible.  I’m just an ordinary girl, living an ordinary life and I did nothing extraordinary.

Please don’t misunderstand me; it is vitally important that those unaffected by kidney failure realise the cruciality of kidney donation, whether cadaveric or living.  Living with kidney failure is harsh.  There are fluid restrictions (including that found in foodstuffs), food restrictions, so many tablets to take, so many appointments to attend, so many operations to go through.  Everything (weekends away, holidays, family functions, work, DIY, nights out at comedy shows/gigs, etc.) is difficult.  Knowing that any day could be a Hospital day and never knowing if you’ll get out at the weekend because of exhaustion makes planning ridiculously silly. Having to explain why you can’t do something is difficult.  People who don’t get it, when you’ve explained it eight zillion times already, are frustratingly irksome. And without a transplant (which is not a damn cure, MiL!) this will be the rest of your life.  No remission.  No Good News. Not ever.  This disease is for life, however long life is.

There’s a brick wall … bang your head against it.

Some articles are good. Some Fb pages are good. But I think these purely begging articles/Fb pages are sending out the wrong message.  And as more people jump on the ‘i deserve a kidney’ train and offer their ‘woe is me’ story, so more people are going to get left behind.  And who will be their advocate?  Who stands up for those who don’t have anyone to help them?

And does this ultimately make them more deserving of your kidney than the woman with a loving husband and beautiful children and massive support network?

(Day 149, NO DIALYSIS!!!)

i’m a survivor

People often ask me (they don’t) my Top Ten Tips to surviving a major operation that one doesn’t actually need.  So, here it is (in absolutely no particular order).

1. Trashy reading material. Books are a no-no, at least for the first few days because you probably won’t be able to concentrate on anything too heavy and thought-provoking.  What you require is a friend or two with a love of trashy, celebrity focused magazines and hope that they’ll come and visit you with the biggest pile of easy-reading rubbish you’ve ever seen.  If the thought of reading them fills you with queasiness you can at least look at the pictures.

2. A litter-picker-upper-grabber thing.  I didn’t have one of these and I later found one in a charity shop (too late).  It saves bending down too much (sometimes it took me five minutes to bend down to pick something much needed up after dropping it) and probably has the added bonus of giving you the enjoyment of pretending you work as a litter picker for the local council.

3. An iPod (or equivalent).  It drowns out Hospital Noise.

4. A mobile phone.  So that you can text your family/friends and update your Facebook status (you will need Internet access for the Facebook bit.)  It also saves on paying extortionate money to use the telly-phones and means the nurses have more time to check your blood pressure because they’re not having to answer the phone every time Great Auntie Nellie wants to check up on you. Be sure to keep it with you at all times.

5. Sweeties!  You probably won’t eat them and you’ll find them in the cupboard two months later, but the packaging is often bright and luvly and just the thought of knowing that they’re there is comforting.  You can also offer them to visitors as a way of getting them to stop talking for a few seconds.

6. Pain relief.  Be sure to have a cupboard full of little pills before you go into Hospital because you really won’t want a long walk to the shop to stock up whilst in oodles of pain.  And you will be in pain, despite what the other numpties proclaim.

7. Tins of soup.  I lived on soup for the first week I was out of Hospital.  It’s perfect ‘get well soon’ food, comforting yet nourishing too, and quick and easy to prepare when you just want to get back to watching that awful daytime tellybox show which is successfully aiding your recovery.

8. Bendy straws.  When you get back to the ward after giving away your kidney they’ll give you water with a straw so that it’s easier to drink.  Continue to use a straw throughout your stay and be sure to have some at home too.  There is no real reason for this; I just like straws.  And so do my cats.

9. Bio-Oil.  Ensure you have a brilliant friend who will buy you some of this as a gift.  Then use it.  If you don’t have a brilliant friend you’ll have to buy it as a gift to yourself.  Look for a good deal online, somewhere like Amazon.  Then use it.

10. A Mummy (or Daddy, Spouse, Lover, Granny, Sibling, Friend, Neighbour, Colleague, Random Stranger, Hitchhiker, etc.) Anybody will do, but preferably it needs to be someone who you feel comfortable with because they will have to help you put your socks on, and you’ll probably spend a lot of time talking to them about bowel movements and suchstuff.  They’re the most useful item to have, simply because they can help with all the previous Top Tips, although you may draw the line at letting them rub Bio-Oil on your scars.

(Day 56 and still 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 …

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.

Losing a kidney, but gaining a life (part the second)

I woke up at Ridiculous O’Clock on the morning on the transplant (Day Zero).  It was so f>cking freezing in my room so I cuddled up in the tightest foetal position I could manage.  If I’d known it was going to be the last time my belly would be pain free for a while I would have made more of an effort to do that thing I love the most; lie on my front.

As an aside, I last night dreamt that I slept on my belly.  I must be missing it lots.

At Half Past Ridiculous a nurse shone a torch in my face to wake me up.  You need to have a shower, she whispered (I know not why she whispered; I had a room to myself) waving a bottle of MRSA-busting shower gel at me.  I dutifully showered and put on the hospital gown she’d given me.  Then I sat on the edge of my remade bed, dangling my feet and watching an early morning omnibus of Coronation Street.  Eventually, the nurse returned and popped my sexy stockings on for me.  Look, you can free your toes and wiggle them if you want, she said.  Oh, nice!  (sarcasm)

My room was like Piccadilly Circus for the next hour or so.  Another nurse came in to weigh me, take my blood pressure, repeat ad nauseum all the questions I’d already been asked the night before … Vampire King took more blood, the research nurse cuffed me again and Hugo the surgeon popped in to say a cheery Hello! and enquire as to whether I had any questions about the surgery. The research nurse took me to see Blokey and we smiled nervously at each other.  The research nurse gave me a hug.  I just felt bewildered.

Mr Anaesthesia and his brightly coloured dotty socks was the last person to come and see me.  He was fabulous, although far too chirpy for Not Nearly Quite So Ridiculous as Ridiculous O’Clock.  He made me laugh, which was perhaps his intention.

They made me lie on my bed and off we went!  Through the ward, along the corridor to the lifts, down the lift, along the corridor, through a door, along a dark foreboding corridor and into the pre-surgery room.  Along the way I watched the people watching me.  It was … interesting …

It becomes a bit of a muddle at this stage.  I remember thinking that this was my very last opportunity to back out as the theatre nurse put a cannula into my hand (this one won’t be here when you wake up; it’ll be a bigger one, she smiled) and made me tell her what I was going into theatre for.  This struck me as a bit odd … didn’t they know?! D’oh!  I was surrounded by four surgeons (Blokey’s two had popped in to wave at me), Mr Anaesthesia and a student nurse from the transplant ward.  She hadn’t actually asked me if she could watch, but I’m not sure if I’d already signed my dignity away in that respect.  Then they all left and the theatre nurse took me into the operating room.

Okay, so I admit to being both disappointed and gobsmacked, possibly in equal measures. It wasn’t like it is in Holby City.  Granted, I was flat on my back, but it was full of stuff.  FULL!  There were hundreds of machines which were whirring and beeping merrily and everything was a boring grey colour.  I think I was expecting it to be prettier.

*laughs*

The theatre nurse helped me move from my bed onto the operating table.  Then she laughed.  Do you know you have your gown on back to front? She asked.  Oh!  So, five or so nurses, four surgeons, one Mr Anaesthesia, a couple of porters and a plethora of hospital staff in corridors and not a single one of them could be bothered to tell me that I should have had my gown on the other way?!  Did I feel like an idiot?  Oh yes.  She helped me out of it and redressed me.  As she did so, two twelve year old boys came into the room.  They’re student doctors, she informed me.  Do you mind them observing the operation?  I didn’t, but it was nice to finally be asked.

Mr Anaesthesia smiled down at me as they secured me into place.  You’ll probably start to feel a little strange now, he said.  A few seconds later he asked me how I felt.  A bit drunk, I mumbled, as the room was spinning. He nodded in agreement.

And then I started choking.

losing a kidney, but gaining a life (part the first)

On Day Minus One the ‘blood supply stopping’ research team phoned us at a ridiculous hour to inform us that a room had been found so that we could take part in the research without affecting other patients with Blokey’s non-existent MRSA.  We sleepily made our way to the hospital and enjoyed tea and flapjack whilst the nurses took our blood and cuffed us.  They tried to make random small-talk with us, but I’m not a small-talk person and besides, the silly nurse was unable to take my blood and she had to beg the Vampire King to take it from me.

I love the Vampire King.

We returned home afterwards.  The bags were packed, the tellybox shows were set to record, the house was amazingly clean … we just had to patiently wait for Mumsy to come along and drive us back to the hospital, which she did in time for a three o’clock admittance.

Blokey had his own room on the transplant ward, despite the negative result from his MRSA swabbage.  I didn’t yet have a room because they’d had an influx of transplants to perform that day.  His surgeon popped along to see him.  He was a friendly chap whom we hadn’t met before and he put us at ease.

When Blokey toddled off for his final haemoD session I still hadn’t been admitted.  Mumsy and I went to the concourse to enjoy scones, tea and mandarin jelly and I very nearly burst into the tears.  It was a very surreal experience and one which is STILL very surreal, to the extent that I’m expecting to wake up at any moment.

Blokey’s surgeon came back to see me in his room later on.  He drew a BIG arrow on my left side and a straight line from my belly button down to my knickers.  This was when I discovered that I’d be lying on my side during the surgery.  Oddly, it wasn’t something I’d even considered until then. My own assistant surgeon managed to pop along eventually, which was nice.

Mumsy left me for a long drive home.  Blokey returned from haemoD.  FINALLY! A BED! They’d managed to find me a bed on the ward, and it was a room all of my very own.  This sounds like it should have been fabulous, and it was, but it was a HDU bed/room and so was large and cold and devoid of niceness.  But at least I had my own loo.  And a tellybox!  For free!  This proved to be useful in the morning when I was able to watch Coronation Street in an effort to clear my mind of heavy stuf

ENEMA!  Ha ha! I have no idea what I was worried about.  It was the easiest and silliest thing in the world, and so trivial in the grand scheme of events.  I’m tempted to admit that I’d quite like another one.

*grin*

Of course, there was the issue of the toilet being completely lacking in toilet paper.  Feel free to imagine me running around the ward in my nightie looking for a nurse (or anyone) to beg for toilet paper, whilst clutching my buttocks together to ensure that nothing escaped!  Please ignore the redness of my face when the nurse laughs and asks why I just didn’t press the buzzer!

*sigh*

It was a long night, a very cold night and the first night in a very long time where I hadn’t been able to sleep easily.  But I still felt remarkably calm …

Oh, I started my period on Day Minus One.  Perfect timing, no?