survival

my turn to suffer

I don’t often talk about how I’m feeling on this blog. Not how I’m really feeling; I tend to keep that on my non-kidney blog. So this is me, opening up.

I’ve been completely and utterly overwhelmed recently. There have been tears. There have been moments of stupidness. I have been angry. I’ve toyed with ideas I’ve never toyed with before, ideas which I once was able to stick my chest out proudly and say, No, I’ve never thought of doing that! There has been emptiness, feelings of inadequacy and constant worrisomeness (deeper than that which I suffer with on a general day-to-day basis anyway). I couldn’t enjoy a few days with my Mumsy. I don’t even know if she noticed my lack of enthusiasm and chat, or if I hid it well. I’ve become quite adept at hiding the way I feel.

So last week I went to see my GP. It was both the hardest thing I’ve done (this year) and the best thing I could have done, in fairly equal measures. This week I’ve been much calmer and I’ve laughed. I don’t know if I would have laughed even if I hadn’t been to see my GP or not, but there’s a definite sense of relief that I’ve started a healing process. I’m being referred for counselling and he’s trying to get me to go on antiDs too, but I’m reluctant because I want to have a baby and antiDs aren’t good for baby. He did point out today (for he made me go back and see him) that the risks of not being on antiDs and becoming pregnant/having a baby may be worse than being on them. I said I’d think about it.

The nurse took FIVE!! vials of blood … He’s testing you for everything! she laughed. He is. He’s testing my thyroid, my kidney (haha!), my liver, and various youwantababyhealthcheck bloods.

I have to go back AGAIN next week.

He’s trying to refer me to the counselling service run by the transplant team at Hospital because he thinks their waiting list may be shorter than the one connected to my local surgery, but they haven’t yet replied to him. I don’t think this stems from the surgery. I think it’s been brought on – partly – due to the whole illness shebangle we went through, but it’s not the cause. I’ve always been melancholy, since childhood. I’ve had episodes in the past (most noticeably 1989ish, 1993, 2001 and 2005) and this time I don’t want to just wallow and not get treated. Maybe talking will stop it happening in the future.

I don’t know.

But I do know that this too shall pass.

(Day 864, NO DIALYSIS!!!)

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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!!!)

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!!!)

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!!!)

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!!!)

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’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!!!)