Blasted Pixies

Blokey doesn’t often forget to take his medication to work with him (he takes it at about 9.30 every morning) but if he does forget to take it with him it’s always on a Friday. This is apparently my fault; I don’t work Friday’s. What this truly means is – quite simply – nobody gets up before him to put all his things together ready for him to grab and go.

Obviously those pesky little pixies have Friday mornings off work, probably because they’re tired after magically tidying the house on Thursday evenings.

*grin*

(Day 563, 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!!!)

another clinic done & dusted

Blokey’s transplant clinic is ridiculous really.  He goes in, has his weight measured and his blood pressure taken, sees whichever nephrologist gets hold of his folder first, and then he tootles off to have his blood taken.  Doesn’t this seem odd?  It means that we spend two days waiting anxiously for *that* phone call, the phone call which says, Come back! Hospital is worried about your results!  His appointments are always on a Wednesday and we can never truly breathe until it gets to Saturday and we’re phone call free.  Wouldn’t it make more sense to have his bloods done first (either the day before, or a week earlier, maybe at the GPs) so that the results can be discussed?

Oh well.

He had an appointment on Wednesday.  We haven’t heard anything bad so we assume all is well.  He goes back in ten weeks.

*breathing sighs of relief*

(Day 480, NO DIALYSIS!!!)

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!!!)

Shush, now.

As far as I know there is nobody at work who knows that I’ve donated a kidney to Blokey other than the two bosses who interviewed me and under whose supportive role umbrella I fall. Oh, and the nurse.

This isn’t intentionally deliberate; I haven’t added anyone at work as a friend on Fb – which is where I tend to occasionally brag, but not really – and it’s not the sort of thing that comes up in conversation, even the sort of conversation where people are discussing their ill spouses/children. I feel that it’s a private matter and besides, I never know how to respond to the gushing and the hero worshipping that it all entails.

*grin*

Yesterday we had some Mental Health training and one of my colleagues (she’s not yet a friend as I’ve only known her for a few weeks and rarely see her) needed a pen.  I dug around in my bag, found one lurking in the bottom amongst crumbs and packets of sweeteners and handed it to her.

This is the conversation which followed:

Her: *notices logo on pen* Oh, how do you know <insert company name here/>?
KatieF: Oh, my husband works there.
Her: *laughs* So does mine!
KatieF: *cringes*
Her: What’s your husband’s name?
KatieF: *tells her*
Her: Oh, I’ve heard my husband mention him.
KatieF: *says something random about how he’s the longest serving member of staff*
Her: Probably, I don’t really remember.

I expect she’s gone home, mentioned me and now knows. This irks me.  I doubt she’ll say anything, but it still irks me. Actually if she doesn’t say anything it will irk me even more because I won’t know if she knows.

Humpf.

This is the conversation I had with Blokey later, whilst we were waiting for the GasMan to fix the heating:

KatieF: Do you know <insert name of colleague’s husband here/>?
Blokey: Yes, he’s the chap who I keep on the right side of because I’m convinced that one day he’ll go postal.
KatieF: Oh. His wife is quite sweet.

Blokey had his clinic last week. We haven’t heard anything so all must be good.  He’ll go back in February and then may even go down to three-monthly visits rather than two.

Huzzah! Life is splendid.

(Day 423, 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!!!)

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!!!)

getting jiggy with it

The best thing about Blokey having Our Kidney is that we have sex.

In fact, we’ve had more sex in the last few months than we had in the first five years of marriage.  CKD can play havoc with the libido of some folk, Blokey included.  I wasn’t so fussed; I like and enjoy sex (Blokey’s nickname for me when we first met was Insatiable), but my relationship with him isn’t defined by sex alone. Plus, we both have (magical) fingers.

I just felt the need to share that with you.

(Day 332, NO DIALYSIS!!!)