living donors

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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a pot to pee in

“Hi KatieF, I’ll be with you in a minute. You’re looking good,” she said. Then she turned again and repeated it. “You’re looking really good actually!”

Whoa! I took that to mean that the last time she saw me I didn’t look so good. Of course, the last time she saw me was the day after I donated to Blokey so maybe I can forgive her.

I was expecting Nurse Potty Mouth when I went for my annual (and only three months late!) living donor renal check-up. Nurse ABitMoreSensible doesn’t work Friday’s so it was a bit of a surprise to see her. She took me down to the transplant ward and we had a cosy little chat about this, that and the other.  She ticked a few boxes on her form, took my blood pressure (131/78 – a little off-kilter but she said it was fine) and made me pee in a pot.

“No blood, no protein, no sugar,” she announced.

Huzzah.

And that was it. I’ll return in three years (five years post-donation) and see my GP for the next two annual check-ups. I just had to visit Team Cullen so they could take my blood (only two vials, most disappointing) but the little Vampire woman did it with no fuss; she got the needle in first time.  Love the Vampire folk!

Now I just need to wait for my copy of the letter which goes to my GP and I’ll know just how nearly-perfect I am.

*smile*

Blokey has a check-up next week. I didn’t see The Delectable Dr Neph, Phwoar! but Blokey probably will.  I’m very tempted to take the morning off work and go with him just so that I can sit and drool; there have to be some perks to this donation malarkey …

(Day 816, 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!!!)