transplant

english idiot

So, Blokey was sorting out his medication last night, popping it into the two seven-day pill boxes that he has. He paused for a moment and looked into space. Then he turned to me and said, I’m not supposed to be take 750mg of this anti-rejection drug twice a day, am I? It’s supposed to be 500mg twice a day.

D’oh!

Goodness knows how many weeks he’s been cocking that up (at least two, maybe four, probably not more). He’s put himself back down to 500mg twice a day but he has emailed his nurse-y lady at Hospital (and someone else, I think) to hopefully get a swift response.

Idiot. And I mean that in the nicest possible way, obviously.

(Day 858, NO DIALYSIS!!!)

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No more OJ

Blokey had his clinic this week.  I have to be honest, I was slightly more than a little slightly scared; it’s been two months since his last appointment and although he hasn’t shown any signs that his level are out of whack, two months is a hugely long time and anybody who knows about CKD and/or transplant rejection knows that some of the symptoms can be silent and sneaky. So, in Good News (fuck off Fate) we haven’t heard back from a panicked Hospital to say Blokey is screwed.  I shall raise my glass of sparkling mug of coffee to this and quietly cheer, Huzzah!

His biggest disappointment is that he weighs the same as he did two months ago.  I offered praise that he’s able to maintain, but nope, he wanted to lose.  I asked him if he wanted to come to Weight Watchers with me.  He declined.

The Research Team (remember the cuffs, the stoppage of blood pumping through the body, the theory that getting the kidney used to occasional lack of blood passing through it will cause it less stress when it’s removed and dumped in another body, or something, perhaps I’m wrong) stuck a cannula in Blokey’s non-fistula arm and insisted on taking blood intermittantly over the course of four hours.  Apparently it’s done in a private clinic at Hospital (due to being privately funded research) which we didn’t get to visit last year due to Blokey’s non-existent MRSA keeping us from going anywhere in Hospital other than the transplant ward.  They gave him copious amounts of orange juice (it was the only liquid he was allowed to drink apart from water, which he hates). Then he came home, with promises that he’ll receive the first published report. He doesn’t think they’ll want to see him again as they have access to his medical notes and will get everything they need from that.  No more orange juice in private clinics.

I have my first annual check up at the end of the month.  Unfortunately it isn’t with the Delectable Dr. Neph, Phwoar (bugger) but it is with the Living Donor Lady who calmed me down and made me laugh the night before the transplant.  This reminds me that I must buy the Living Donor Team at Hospital a card and some chocolates to say thank you.  It’s something I should have done many months ago but I think the one year-ish anniversary will suffice.  I’m not worried about the appointment.  However, I am hesitant. I’ll have my blood pressure taken, urine examined and the Vampires will insist on taking some blood away and everything should be hunky-dory … off you go, see you next year KatieF!  I’m hesitant rather than worried because I’m 99.999% convinced there is nothing wrong with me, but there’s still the niggle that they may find something out of place, or something.  But that’s what the annual check up is for … it would be silly not to take advantage of it and then be like Blokey and find out too late that something is off-kilter …

And so life goes on …

(Day 353, NO DIALYSIS!!!)

fighting for the NHS

This post was inspired by this page, posted as a link by Jenny herself on a Fb group I belong to:

The National Health Service (NHS) may not be perfect but I will do my utmost to fight for it should the need arise.

Why?  So that we NEVER have to go to the lengths some patients in allegedly developed top-notch countries have to go to.

As a patient on haemoD (or indeed, any type of dialysis) Blokey was entitled to free prescriptions. He has a medical exemption certificate anyway, due to the issues with his thyroid (which may have caused his kidney failure, or may have been caused by his kidney failure; we will never know) but if he hadn’t his medication on haemoD would have been free.  Once you’re not on dialysis anymore you have to start paying for your prescriptions.  With the amount of meds a transplant patient has to take to stay alive this seems a tad ridiculous to me (when compared to some of the medical conditions which are exempt) but that’s by-the-by.  If he did have to pay for his prescriptions he would buy a Prescription Pre-payment Certificate (PPC) at a little over £100 a year.  Very much worth the investment.

And other allegedly developed top-notch countries?  I read horror stories of insurance only paying for medication for three years maximum, of patients having to prove they have a minimum amount of dollars in savings so that they can afford to pay the top up (if need be) each month, or indeed continue to pay for their meds when the insurance companies stop, just to get on the transplant List. It makes me angry that in order to live people are treated so appallingly.

Jenny (see picture above, from this website) is in the USA and she needs a kidney transplant.  She’s fundraising to help pay her expenses for having a transplant.  In much the same way as some patients use the Internet to find a kidney, she’s using the Internet to find money from strangers.

This is wrong on many levels; Jenny shouldn’t have to do this.  When you’re living with CKD life is hard enough without having to worry about whether you can afford to go through with something which will not only greatly enhance your life (but not necessarily save it, lest we forget that) but will cost you less money medically than being on life-support (dialysis), which in turn makes you less of a drain on medical staff/Hospitals. And why should anybody have to ask/beg for money from other people for this reason?

It doesn’t just make me angry … it makes me sad too.

Blokey will always need medical care.  If Our Kidney fails he’ll have to go back on dialysis.  He will never be cured from kidney failure and there is no remission time where we will be able to celebrate so many years free from CKD.

This is our life and our normal, and the NHS makes our life more comfortable and less stressful.  If major changes are made to the NHS (imagine if we need insurance; Blokey’s premiums will be through the roof!) this won’t only affect us, it will affect everybody who becomes chronically ill, even those who advocate change.

Do we really want to become less civilised, choosing for the rich to be worth more than the poor, creating a land where we don’t phone for the ambulance or visit our GP – regardless of how urgent or death-defying the situation is – because it is going to cost us; because it becomes a privilege rather than a human right?

The NHS isn’t perfect.  But it’s a more perfect system than other countries have and for that I will be eternally grateful.

And I will fight to keep it near-perfect just so that we NEVER have to create a fundraising page for Blokey.

(Day 348, 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!!!)

goodbye, christmas

Christmas was a bundle of joy this year.

Or, it would have been had my MiL not grumbled copiously about dinner.  Oh, I didn’t cook it … we went to the pub.  Unfortunately we went to a different pub to the one we normally go to, at the request of my MiL.  Ergo, it’s her own fault that she had to grumble and next  year I’ll put my foot down and insist on going to the place we know and love.

But it really was a bundle of joy.  Blokey is still a little iffy with regards drinking and was worried about the sudden spike, and subsequent dip, of his creatinine levels.  We didn’t have to think about fitting everything in around haemoD and he didn’t actually have to limit his fluid intake.  Plus, he could eat what he wanted!  Wowsers!

I did miss the present from the dialysis unit though.

*sigh*

Interestingly, Blokey is becoming more flippant with regards his fluid intake.  Before the transplant he was completely AdamAnt that he’d have no issues with drinking and it would be a breeze!  He was wrong (he often is) and it’s only in the last week or so that he’s been drinking (what I would term as) normal amounts.  Yesterday we had his post-Christmas clinic and he’s been waiting for a phone call all day.  It’s a phone call which hasn’t materialised and for that we are grateful; it means there’s been no sudden spikes or dips, and no helter-skelter results.  Phew!  He does still have a large (prominant) fluid collection but he was assertive yesterday and Mr. Neph, Phwoar is going to speak to the surgeon about what to do next.

His next clinic isn’t until the eleventh.  He’s back with the local anti-coagulation clinic for his warfarin, and on Tuesday he’ll be returning to work.

Life is beginning to resemble ‘normal’ once again (with the added bonus that ‘normal’ doesn’t involve haemoD three evenings a week!)

the waiting game

Some people assume that once somebody has a transplant they’re miraculously cured of all kidney related ailments.  It isn’t a cure; it’s simply another form of treatment.

We don’t know how long this treatment will last.  It could all go tits up tomorrow, but it could be a treatment which lasts for forty years.  In that sense it’s worse than haemoD, which we knew was four hours a session, three times a week, for ever.  And always.  Or at least until medical research brings some new form of treatment into existence.

Yesterday marked our two month kidneyversary.  Times flies.  You would think that by now things are settled, medication is fixed and life can begin to get less worrisome and more liveable.  You would be wrong, but we forgive you for making that assumption.

Blokey had his weekly clinic appointment last Thursday and it was ever-so exciting.  He’d lost 4kg since the previous week, we already knew that his creatinine* was down to 149 (1.686 mg/dl in AmeriSpeak) and they were so happy they said he could have a week off and they’d see him on the 29th.  Huzzah!

Our joy was short-lived though.  Blokey reminded them that he needed his stent removed and the delectable Dr. Nephro agreed that it should be done as a matter of some urgency and proclaimed that the person who usually arranged the appointments was very flakey in her/his forgetfulness.  Blokey was told to come in the next day and it would be removed.  It’s a simple procedure, although not a particularly nice or comfortable one, and doesn’t take long.  So, Blokey was up with the milkman and off he went to Hospital.  He rang me hours later, close to tears, to inform me that Dr. and Mrs. Nephro were panicking (I don’t think they were) and he had to have an ultrasound because everything was going wrong.  My Blokey is very dramatic.  This makes him both loveable, and a little bit hittable in equal measures.  He said that he’d been told his creatinine had shot up and that a biopsy was now practically non-negotiable, but he hadn’t actually spoken to anybody in Nephro Land and was just relying on messages, probably being brought down by work experience kidz.  He assured me that nobody was telling him anything and they weren’t allowed to.  Bless him. Ultrasound was fine, stent was removed, Blokey came home.  An hour later we toddled off to his company work bash (we got a mention AND a round of applause in the After Dinner Speech, how cringeworthy) and thus began a weekend of worry and frustration.

*sigh*

This morning we went to Hospital so that Blokey could have a chat with the delectable Dr. Nephro and have more bloods taken.  Remember the 4kg he’d lost last week?  That’s all gone back on.  Everybody is scratching their heads about that, but hopefully that’s just a minor irritating glitch.  We found out that his creatinine had risen to 199 (2.251 mg/dl) and this is what had worried them.  However, the kidney looked perfect (Docs words) and all his other labs are good.  I’ll ring you before I leave work with the results, said the delectable Dr. Nephro.  Usually they ring the next morning, mostly because it takes that long for them to get the results, but he could see/hear that Blokey was wound up and worried.

Blokey has spent the day playing Star Wars: The Old Republic and grumbling about pesky players stealing his bits (or something).  I’ve spent the day tapping my fingers on the desk, in between walks to the pharmacy to pick up carrier bags full of medication

(We don’t have this one, said the woman.  When will you have it, only it is THE most important meds he takes? I enquire. We’re expecting it to be delivered today, she tells me after a big sigh of annoyance and a slow meandering walk [5 steps] to the pharmacist and back.)

and the posting of important letters to benefit agencies and Christmas cards to neighbours.

Half an hour ago the phone rang.  It was the delectable Dr. Nephro, Phwoar.  Blokey’s creatinine is back down to 161 (1.821 mg/dl).  A biopsy isn’t required this side of Christmas.

And tonight we’ll be eating doughnuts in celebration.

*Creatinine is a waste product from the normal breakdown of muscle tissue which is filtered through the kidneys and excreted in urine. Doctors measure the blood creatinine level as a test of kidney function. To put all these numbers into perspective, MY creatinine is about 100 (1.13 mg/dl) which is within the normal range.  Ideally Blokey’s should be about the same and at least below 150 (1.69 mg/dl). 

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 …