donation

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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opting in or opting out?

It isn’t a secret that once upon a time I was against having my organs whipped out of my body and transplanted into someone else after my death.  In fact it’s a cause of much merriment that I went from being so very mortified about the idea to then giving little thought at all to becoming a living donor.  The sadness behind this is that had I died in such a way that my organs could be considered for  donation, my nearest and dearest would have said, ‘No!’ and thus those who really needed them would have been deprived.

Thankfully I didn’t die.

Phew!

Perhaps it is for this reason that I don’t view those who say they don’t want to donate as selfish.  I also don’t need to know their explanations; as I’ve said before I do believe it’s a personal decision and one we shouldn’t be judged on.

But I do believe that we should have an opt-out system of organ donation in the UK.

There’s an article on the BBC today about how the number of people donating organs after death has increased by 50%.  I’m not sure how factually correct this is; it could simply be that transplants of certain organs [for example, corneas] have progressed to the extent that they’ve become ‘easier’, but percentage wise it looks good, right?  The article mentions (not in detail) how some people have said that an opt-out system is needed and obviously this brings the ‘over my dead body!‘ brigade out in their droves.

Some current carriers of ‘I’m on the donor register!’ cards claim that they’ll opt-out purely on principle.

It’s my body!” they scream, loudly.  “Nobody has the right to take away my control of my body!

[as an aside there’s a cynical little bit of me which thinks that they’re mostly concerned about the fact that they’re not choosing to do a Good Thing; how can they look so perfect if that choice has been taken away from them …]

In part I do agree with them. You should have a say over what happens to your body after death, from donating organs to choosing whether to be cremated or buried, to making the decision to have a solid oak coffin over a simple wicker casket.

My response to this is that an opt-out system actually makes it easier to have control over your organs being used after your death.  We live in an apathetic ‘I’ll do it later’ society, where we don’t talk about our deaths with our loved ones.  Those who are so vehemently against an opt-out system/having their organs donated will opt-out.  They will take the howevermanyminutes it takes to do so, because they feel so strongly about it.  An opt-in system doesn’t create the same powerful surge of emotional responses; with an opt-in system we all just shrug our shoulders, assume it will never happen to us and promise we’ll get round to it tomorrow. It’s lacking in both depth and debate.  We need a good shake-up.

And that’s (quite simply) why we need an opt-out system in the UK.

(Day 541, 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 …

nothing to see here

Not literally, silly.

Blokey’s post-transplant clinic appointment last Wednesday went so smoothly that they told him they don’t want to see his ugly mug again till the 4th October.  This is Good News.  However, the idea of having no check-up in the meantime fills me with dread, because I’m a worrier and the glass is only ever half-empty.  I know he’ll be fine but I will always worry.  I was programmed for it at birth.

I’m feeling redundant again … anybody need a part of my liver?

(Day 301, NO DIALYSIS!!!)

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!!!)

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.

PAIN!!!

Dear Potential Live Kidney Donor,

During your trawls of the Internet searching for information you will have stumbled across some amazingly brilliant people with brilliantly amazing anecdotes to match.  Google searches will have thrown up such snippets as ‘back at work in nine days!’ and ‘I was only a little bit sore afterwards!’ and ‘playing golf within two weeks!’ and ‘went back to work in two weeks!’ and ‘home the next day!’ and …

Piffle.  I think it’s only fair that I balance these brilliantly amazing anecdotes with PAIN!!! because folks, I had lots of it.  I shan’t lie.

My experience with pain (and hospitals) is somewhat limited.  Emotional pain?  Oh, I’m a veteran!  Physical pain? Nah, not so much.  At the age of six I whizzed around a corner on my trusty bicycle and promptly fell off.  These were the days before helmets and so I ended up at the hospital with concussion and a beautiful black eye.  Or was it two black eyes?  I remember not; I was only six. An x-ray revealed that I had a fractured skull.  A second x-ray revealed that the first x-ray had been telling fibs.  My Mummy declared it a miracle!  They kept me in for two days.  As a Doc Marten wearing seventeen year old I tripped down the stairs, from the very top to the very bottom.  I didn’t break my neck, but I did break my wrist.  My Mummy declared it a miracle!  In my early twenties I slipped on a patch of ice and fractured my elbow.  Eleven months later I slipped on a different patch of ice and fractured my other elbow.  My Mummy simply called me clumsy.

However, I don’t remember any of these events as being particularly painful.  The only other two times I can remember being in chronic pain was back in 2004 when I had an issue with my wisdom teeth and towards the end of 2009 when I suffered for over a week with Mesenteric Adenitis, which mimics appendicitis.  I would say that the Mesenteric Adenitis episode was the worst pain I have ever experienced, in my life.

Until the last few weeks.

Before we tootled off to the hospital I didn’t even think about the possibility that I might be in a lot of pain afterwards.  I’d been told that I’d be inundated with pain relief and perhaps this gave me a false sense of security.  Reading of the experiences of other people probably added to that.  I expected it at the beginning.  It was supposed to hurt … I knew this because every few hours the nurses would ask their scale of 1-10 pain question.  I could cope with pain if it was supposed to be there for the first few days, even if it made movement of any kind feel as though my belly was being sliced with barbed wire wrapped lovingly round newly sharpened knives which had then been dipped in a nasty acid.

The journey home from the hospital was terrible, perhaps because of my stupidity in not insisting on a wheelchair to get me to the car.  That first weekend is a blur of PAIN!!! and picking up the KidneyKake and PAIN!!! and visiting Blokey (only once) and PAIN!!! and Mummy putting my socks on for me and PAIN!!!

You get the general gist.

I was in PAIN!!! for three weeks, darling potential live kidney donor.  I was impressed that I managed to get to the interview just two weeks post-op (dosed up on however many painkillers).  That day left me feeling completely and utterly exhausted.  Even now at three and a half weeks post-op I don’t think I have the energy to return to work (not that I can because I don’t have a job, but if I did have one …)  I can’t wear too tight clothing round my waist still because after a short while it becomes uncomfortable.  I can’t sit in one position for too long because it becomes uncomfortable.  I can happily walk around town for a mile or so, but the inside-wound gets a little irked if I attempt much more than that. I can tell you that compared to this time last week I feel heaps better and imagine that this time next week I’ll probably be laughing at my inability to cope with the PAIN!!! and itching to get back to my non-existent job.

Perhaps I’m just a wuss. When I read of those people who have only had to cope with being ‘a little bit sore’ and who’ve managed to get back to work (and to digress, why would you even want to? Milk it!!) in days I become incredibly deflated.  I know I did a wonderful thing; I see that every single day when I look at my husband and notice his increased energy and happiness and horny-ness (haha, I think not … do you know how much PAIN!!! I’m in!) But to discover that you’re more feeble and weak than other people is demoralising and sad.  I can’t jump up and down and squeal, Yay! Look at me! I’m so fabulous and it was the easiest thing I EVER did!! because it wasn’t; it was the hardest and most painful experience of my life to date and I don’t feel fabulous for doing it.  I cried, a lot.

I wrote you this letter, sweet potential live kidney donor, because I need you to know that it isn’t always as wonderful and perfect as the glossy magazine articles, and the front-page spreads on the local free paper, and the donors in their web forums would have you believe.  You might be as unlucky as me.  You might even be unluckier.  I trust and sincerely hope that you’ll be able to donate and then jump onto the ‘only a little bit sore’ bandwagon, but I want you to be aware that this might not be the case.

And please don’t let this put you off … Would I do it again knowing that I might be in so much PAIN!!! afterwards?

Um … YES!!! A couple of weeks of feeling as though your belly is being sliced with barbed wire wrapped lovingly round newly sharpened knives, which have then been dipped in a nasty acid, is worth it (and bearable) when it gives someone back as near as perfect a life as they deserve, with NO DIALYSIS!!! What a daft question, silly.

Potential donor, I wish you every success and a fairly pain-free recovery.  And don’t forget to stock up on the painkillers before you go to hospital …

With love,

KatieF x

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

It’s a massive disappointment to discover that they didn’t do the whole ‘Can you count backwards from 10?‘ scenario.  Blokey had assured me that this would be the case, and that I wouldn’t manage to get past the number 10.  Mr Anaesthesia was obviously of the opinion that counting backwards was not for me, instead preferring to insist that my last words signified intoxication and merriment.  Cheers!

So one moment the room was spinning and the next I was choking.  Except I wasn’t choking; I can only assume that I was beginning to wake up as they removed the tube from my throat.  I didn’t even mumble any funny business as I came round.  All I could manage was a feeble It hurts! when they asked if I was okay.  I remember little about the recovery room.  I do remember that it was full (I say full, but there were perhaps four or five other patients in there) and we were all in varying stages of wakefulness.  I was asked how much pain I was in (scale of 1 – 10) and I think I said 7, but I can’t be sure.  The nurse made sure I could use the pain relief button attached to my left hand.  Yeh!  (It didn’t actually work that well, I don’t think.)

I was back on the transplant ward by 3pm and five minutes later my Mumsy joined me.  Looking back now, I am so pleased she was with me even though I was so groggy that I barely really noticed.  Who else was going to help me sip water through the straw and hold my hand?  She informed me that she’d arrived at the hospital at 12.30pm and had a lovely natter with the Living Donor Lady who rang down to theatre and then told her that my kidney had just been removed and was about to go through to Blokey.

I have only vague recollections of the remainder of Day Zero.  Apparently one of the first things I said to Mumsy was that two twelve year old boys had been in the operating theatre watching the transplant.  A doctor came to see me at one point and did a bit of prodding.  At some point in the darkness of the middle of the night he took bloods because he was worried as my BP was so low (it got down to 72/49 at one point).  I slept mostly, except for those occasions when a nurse took my blood pressure and whispered that she wanted to know how much pain I was in.  Mostly I was on a pain of about 4.  Even when it was worse, or better, than the previous time I still said Oh, about 4, simply because I had nothing to judge it against!  I don’t know how much pain I was in! I just know that sometimes it was excruciating and other times it wasn’t.

Oh, and the urinary catheter?  Sheesh, what am I like?!  I didn’t even realise it was there.  *happy face* … It was, however, a bit weird not having the need to wee.

Night-time was horrid.  I didn’t really have a clue who was on my bay in the ward, but the noises were sickening.  I refuse to go into detail though.  I slept in the way that groggy people do … fits and starts.

NO DIALYSIS!!! Day One:

Breakfast?  I don’t think so!  Do I look like I want to eat something?

*sigh*

A team of doctors arrived and squished my belly around.  They noted that my BP was steadily rising, although still not quite normal.  Then another doctor came around and decided that my catheter and cannula could be removed, as could the pain relief.  Apparently I was barely using it.  This may account for the reason it wasn’t working very well.

D’oh!

At some stage I must have asked about Blokey, but I honestly have no recollection of doing so.  This makes me feel heartless, but I think I was in so much pain and discomfort, plus I was fighting off copious waves of nausea (I am vomit-phobic) so I had little chance to actually think.  I was also aware that they would have told me if there had been any complications, and they hadn’t, so he must be okay.  I got to find out at about 2pm on Day One.  The nurse removed my catheter for me at 1pm.  It didn’t hurt, at all.  I’ve finished! she said.  Really? I replied!

Mumsy arrived soon after and we walked round to Blokey’s private little room.  He was fine!  His pee was red, but HE WAS PEEING!!!  WooHoo!  I was told off by the nurse for not wearing the gloves and apron.

*sigh*

He wasn’t even MRSA positive! Dimwits! As it transpired, he was actually happy to be negatively-positively MRSA free because he liked having his own room for the duration of his stay.  He didn’t have to suffer the embarrassing noises, or the snores, or the humiliation of attempting to throw up in a room full of strangers and being unable to, instead making ridiculous gagging noises.  The woman in the bed opposite mine was lovely though … We’ve seen it all before, she laughed.  She’d been in for ten weeks, bless her (bowel related, not kidney).

I attempted some food that evening.  Scrambled egg and mashed potato.  How’s that for a combination?! I struggled through the scrambled egg but left the potaoto.  It was manky.  This was a shame because the mashed potato has always looked lovely when Blokey’s had it on previous admissions to hospital.  I’d vowed I was going to have it, and now I vow that if I ever have the misfortune of having to return to hospital I will never eat it again.  I may steer clear of the scrambled eggs in future too; they came back up less than an hour later (thankfully I made it to the loo in time, although I very nearly didn’t; I had visitors and thought they would never go away and I’d have to grab the sick bowl and do it in front of them!)

And speaking of toilets, oh my gosh!  Why did nobody explain to me that I’d have to wee in a bedpan?! ‘Tis okay, I could do it in the privacy of the bathroom, but peeing in a bedpan?!  With four of us in the bay the toilet quickly became a storing room for bedpans of wee.  It’s amazing how quickly your feelings of humiliation bugger off when you’re in such a situation though.  I mean, two of the women had stomas (I had no idea what they were till I got home and looked them up) and one of the women made constant noises and needed constant clearing up.  In comparison my feeble attempts at recovering from a major operation were daft.

I did sleep a lot on Day One, but found sleep difficult as the sun went down.

NO DIALYSIS!!! Day Two:

I managed breakfast (toast) and then the doctor said I would probably be able to go home that day, but only on the proviso that I’d managed to do a poo open my bowels before I scarpered.  I was happy with that … having a poo bowel movement couldn’t be too hard, surely!? I’m a pretty regular goer in normality, after all.

I was a tad bored on the morning of Day Two so I wandered down to see Blokey (remembering the gloves and apron this time!) and we had a little competition to discover who was in the most pain.  He thought he was, and I thought I was.  It was a draw.  He was STILL PEEING!!! which was lovely.  But he was miserable.  I hate seeing my Blokey miserable, and it’s even worse when there’s nothing you can really do to help because you’re in SO MUCH PAIN yourself!  Day Two was lots of worry about whether Our Kidney was actually working well enough.  It was also the day that I found out there’d been some umming and ahhing about taking Blokey back into theatre on Day Zero.

I managed more food at lunchtime (chicken and sweetcorn pasta, which was actually rather tasty) and it stayed down.  After a very sweaty ‘nap time’ (it’s like being at nursery; they turn all the lights off and close all the doors) Mumsy came to see me and we began our adventure with my bowels.  I do need to go, I can feel it, I said.  But I didn’t go.  I couldn’t go.  I think it was partly the fact that I had to go in a bedpan.  The nurse informed me of this when I specifically asked if I had to go in the bedpan. Oh yes! She laughed, We like to see evidence of everything!  It was also partly because opening your bowels tends to involve muscle usage and those muscles tend to be in the abdomen area.  A major operation around the general area of your abdomen tends to make your tummy rather tender.  Straining is not a Good Thing to indulge in!

We walked around the ward lots.  Mumsy was of the opinion that this would cause my bowels to open.  Occasionally on our ward round we popped in to see Blokey in an effort to cheer him up.

My bowels remained closed.

I just wanted to go home and be in pain in the comfort of my own home, with a tellybox and everything!

Dinner was lamb casserole with broccoli.  Again, I was surprised by the yummy-ness of it.  But it didn’t make my bowels want to open.

Eventually I did that thing I didn’t want to do.  I asked for a suppository.  Aaaarrrggghhh!  One of the nurses did it for me; I’ve never stuck anything up my bum before (does that spoil my that girl will do anything non-existent image?!) Are you sure it’s in the right place, I asked her.  Of course, she chirruped! I do these all the time! I know it wasn’t in the right place.  Nobody believed me, but I know the difference between that hole and THAT hole on my own body.

I’m now of the opinion that this nurse was a shit nurse.  I hold nurses in high regard generally.  I think they have to put up with some truly horrendous things and I honestly couldn’t do it, not least because funny smells and nasty pus-filled body parts cause waves of nausea to crash through me.  At about 9pm I was desperate.  Mumsy was saying she’d have to leave soon, and I couldn’t bear the thought of one more night in the hospital.  As there had been a shift change, another nurse tootled on over to insert some more suppositories.  These were in the correct place. Oh yes!  And half an hour later they did their job splendidly!

I knew you were going to go that time, said the lady opposite.  I could see it in your face as you went to the bathroom!

So, I ran stumbled painfully round the ward in jubilation, searching for a nurse

I’ve done it! I said. The evidence is in the bedpan in the bathroom.  Please can I go home now?

I don’t need to see the evidence, she laughed.

Who told me they needed to see the evidence?  Oh, of course, it was the shit nurse.

*sigh*

So I poured the evidence down the toilet and packed my bags.  I had (loose) cuddles with Blokey and said a sad goodbye as Mumsy took the bulk of my stuff to the car.  At 10pm on Day Two I was discharged, minus my discharge notes because the printer had broken.  We had a long slow walk (ask for a wheelchair, you numpty!) through the hospital, to the car, complete with a huge bouquet of flowers from Blokey’s work.  Blokey had been told off about them; his boss had visited and brought them in earlier that evening.  He’d been buzzed in and walked past however many nursing staff to get to Blokey’s bay and nobody had told him that flowers weren’t allowed!

It was a painfully uncomfortable journey home (fifty or so minutes) and upon arrival I just collapsed into bed.

Spending a day trying to poo open your bowels is really exhausting.