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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Kidneyversary

Today is our two year kidneyversary.

Whoop!

Yesterday I was a bit of a bitch to Blokey.  I make him sad and I make myself sad.  I’m going to get it rectified.  I tell you only so you don’t think we live a life of bliss.  The life of unbliss isn’t connected to the donation and transplant, but sometimes life isn’t all harmony and roses.

But today is a HAPPY DAY!  At this moment two years ago I was drifiting in and out of consciousness.  It becomes more surreal with every day that passes and sometimes I’m convinced it happened to somebody else.

As it’s also our wedding anniversary on Monday, we’re going out to our local Indian restaurant for a tasty celebratory meal tomorrow night. I might even get tipsy.

Blokey had a three-month clinic appointment on Wednesday.  Delectable Dr. Neph, Phwoar! told him to cut one of his anti-rejection drugs (the CellCept I think) from 750mg twice a day to 500mg twice a day.  There is no reason for this other than the length of time since the transplant.  In a month he has to see the nurse at our GPs surgery for a blood test; *fingers crossed* the decrease doesn’t mess with Our Kidney … I know they wouldn’t decrease it if they were worried, and that the decrease is a good sign, but it’s still a month of worrying until he has his blood tested and the results come back in!

The nurse at the clinic checked his moleyness for signs of cancer.  All is well there, too.

Phew.

I need to have my two year check-up soon.  I think I’ll get my smear (*yuck*) out of the way before I arrange that.  I can’t have too many medical things going on at once.

Anyhoo, here’s hoping for many more years of blogging about kidneyversaries!

*smile*

I got flowers from the love of my life today.  Feel free to enjoy them with me …

flowers

 

 

 

 

 

 

 

 

 

(Day 731, 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!!!)

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!!!)

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 …

i do think you rock, but … *

I do, truly I do.  Giving up a little bit of yourself to ‘save’ the life of a stranger is amazing and I would have joined in if anything had happened to Blokey prior to our transplant.

I do resent the fact that you’re somehow superior to me, or better in some way.

It also irks me that maybe you don’t want to know how the recipient is, and you feel no responsibility.  The fact that you don’t want to know who they are because you don’t want to begin judging them (I’m sure you didn’t mean it to sound like that) is worrying.

Did they explain to you that it’s a treatment not a cure?  Are you aware of the percentage of transplants that reject within the first year?  Do you have any understanding at all of what it is like to live with a transplant, to have these feelings day in, day out, to know that one day (maybe tomorrow, maybe in fifty years) it will begin to reject/fail?

And those first few months after the transplant may not all be plain sailing; there will be hurdles to jump over, the kidney may not take immediately and may never work as well as it was expected, there is the kerfuffle of getting the meds right and the anxiousness about ending up on haemoD again or getting a cold …

You give a wonderful, life-changing, gift but you don’t have to live with the aftermath. You do an amazing thing, suffer through some pain, go back to work, get pats on the back, give interviews on tellyvision and to newpaper-men (do you get paid for that?) and then you continue with your life.  Maybe you raise awareness of the need for live (and dead) donation.  I’m sure that sometimes you wonder how your kidney is doing, where it is, the adventures its enjoying …

Perhaps you just move onto the next Big Project, the next Big Pat on the Back.

You are brilliant, but perhaps you need to live with what happens next … just for a day, if you really want to gain a little bit of an understanding.

(* this is for the non-directed altruistic donors who seem to say the wrong thing, to those who seemingly do it only for the accolades, for those who appear not to really care or understand … it is not written to all non-directed altruistic donors.)

(Day 311, NO DIALYSIS!!!)