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!!!)

Nothing to see here …

Truly.  Life is fairly bliss.  Blokey had a clinic appointment at Hospital on Wednesday and we waited impatiently for the phone to ring to inform us that there was an issue with Our Kidney and he must whizz to Hospital post-haste.

There was no phone call.

Phew.

As it stands he was told that his labs back in April had been perfect and his creatinine at 160 (which they’re happy with).  He has put on weight, but he was aware of that.  I’m not privy to how much, which means it must have been bad.  He doesn’t really look too much bigger to me, but hey-ho.

We joined the gym this week and were inducted today.

Please stop laughing.

(Day 642, NO DIALYSIS!!!)

Making me look silly

Blokey went to Hospital for a clinic appointment a couple of weeks ago.  A few days later he turned to me and we had the following conversation:

Blokey: Oh, I told the neph that you sometimes say you feel your kidney even though it isn’t there any more.

[i have no idea what he’s talking about; i think i said it once or twice, way back when.]

KatieF: Which neph did you have?

[i feared the worst]

Blokey: Delectable Dr. Neph, Phwoar!

KatieF: Oh good.

[fear came true]

Blokey: He said you’re a banana.

[i can’t remember the real words so i’ve paraphrased]

Ho-hum. We’re assuming Blokey’s labs are all fine because Hospital haven’t contacted us to say otherwise. Still, that could just be because Delectable Dr. Neph, Phwoar! is still laughing at me. Humpf.

(Day 577, 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!!!)

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!!!)

the misbehaving kidney

Wednesday (Day 183, NO DIALYSIS!!!) was our six month Kidneyversay.  It should have been a happy occasion, filled to the brim with hope for the future, but instead Blokey ended up back in Hospital with a creatinine of 1000 (11.3 in AmeriSpeak).  And there he resides still.

He was discharged from Hospital hours after my last entry and everything was going swimmingly.  We had a nice Easter with Lord of the Rings and chocolate.  We went for walks and Blokey got on with his OU assignment whilst I plied him with tea and took care of his needs.  Day 177, NO DIALYSIS!!! saw Blokey become a little ill.  He wasn’t too worried, so I wasn’t too worried.  The following day he was a trifle worse and I suggested he phoned the doctor/Hospital.  No, he was fine.

*rolling of eyes*

It wasn’t until Day 182, NO DIALYSIS!!! that Blokey decided perhaps he did need a doctor.  My nagging and utterings of mean-ness (I didn’t give you my kidney so that you could neglect it!) didn’t do much to cajole him; it was the lack of peeing which suddenly panicked him.  So Wednesday morning saw him toddle off to Hospital, where a scan showed no damage, but his bloods showed crazy levels, particularly of creatinine.  For those not in the know, a creatinine of 1000 is pretty much dangerously death defying.

*grin*

After coming home to grab his toothbrush and pyjamas he went back to the nicely starched, cold and uncomfortable bed they’d found for him.  The Good News is that he’s currently on his lonesome due to (previously, upon admission) having the squits.  He doesn’t have the squits anymore, is on a fluid drip, is peeing again and his creatinine had gone down to the dizzy-heights of 940 yesterday morning.  Huzzah!  Hopefully his bloods this morning will show that it’s gone down MUCH further.  Oh, and he’s eating … he barely ate for six days; I think he managed half a bowl of soup, two digestive biscuits and some scrambled egg.  If nothing else good comes of this fiasco, at least he should have lost some weight.

They performed a biopsy on Our Kidney yesterday.  I don’t think he realises the possible consequences of this, although I can only assume they’ve told him the risks and he’s okay with that.  It meant he had to spend the entire afternoon flat on his back, but despite that he sent me lots of happy-ish texts.  This is odd for Blokey; Hospital usually brings out the worst in him.  Woe, doom, gloom, miserableness, anger … it all comes across in his texts, making me sad.  This time his texts (and words; we actually spoke on the phone last night!) are upbeat and positive.  He’s in a Good Place right now*.  But I digress; the slivers of Our Kidney which they retrieved from the biopsy were fatty (hey, that’s my kidney!) so they weren’t sure how much info they’d glean.  If need be they were going to perform the procedure again today.  I hope that he tells me long before they do so that I can convince him to ask extremely important questions like, how risky is it? and is it completely necessary?

We’re expecting him to be enjoying Hospital food until Monday at the earliest.  I shall pop along to see him tomorrow, and we shall miss our Big Night Out (we were supposed to be seeing the comedian Sarah Millican, the first comedy show we would have been too in yonky-donkeys) but we’re gifting that to friends.  It seems that when we actually plan for something, something else comes along to make the plan fall into chaos.  We shall have to start living spontaneously.

Haha.

(Day 185, NO DIALYSIS!!!)

*I’m a little concerned about him being in a Good Place because our beloved Mog-cat is missing, last seen by me at 10 on Sunday morning. It’s been a stupid week.

the delectable dr. neph, phwoar!

Last week (Wednesday, Day 162, NO DIALYSIS!!!) Blokey attended Hospital again for his hernia operation.  I haven’t slept well since then; I don’t think I ever do.  Partly because I don’t like being on my own (although I’m used to it) and partly because I worry about Blokey.

I spent most of Wednesday evening panicking that Blokey would forget to take his immunosuppressants as there was nobody at Hospital to nag him.  Mumsy was about to ring the ward to enquire when Blokey suddenly replied to my texting/ringing and I was able to stop crying.

We toddled off to see him on Thursday.  He was in oodles of pain and very groggy.  Occasionally he coughed.  When they later discovered that his temperature was a little over what it should be they panicked him by suggesting that he had an infection and thus would need a chest x-ray.  He had the chest x-ray at one in the morning.  Stupid O’Clock.  Friday saw his drains and catheter being removed, and he was cough free.

On Saturday the Delectable Dr. Neph, Phwoar! came round whilst I was there.  He’s our favourite kidney doctor, although Blokey’s reasons for liking him are probably different to mine.  He snuffed the idea of there ever being any infection and decided that their idea of intravenous antibiotics was a tad over the top, prescribing tablets instead.  He also listened to Blokey when he said that he needed to take a loading dose of warfarin, agreeing that Blokey knows how his body works.  The one brilliant aspect of being treated reguarly in the same Hospital is that you get to know the people treating you and, perhaps more importantly, they get to know you.  It can make a huge difference when you suddenly feel as though you’ve got someone on your side.

Anyhoo, the Delectable Dr. Neph, Phwoar! made a note that he was happy for Blokey to be discharged, poo-pending.  The surgeon still has to agree, but twenty-one hours later Blokey is still waiting to see him.  And there is still the matter of the pending-poo, which is refusing to be forthcoming despite laxatives and suppositories declaring war on Blokey’s anatomy.  I have been reliably informed that there is lots of wind though!  I imagine the issue is a psychological one; Blokey doesn’t want to strain his tummy and find that POP!!! there’s the hernia again!

As of now, I have no idea if he will be home tonight or tomorrow.  I have fluffed up the cushions and stocked the cupboards with soup in anticipation.  I’m just unsure as to whether I should hoover or not.  Or even if I need to hoover.  Ack, that can wait.  I might make myself a badge reading ‘Nurse’ ready for the next two weeks (which nicely coincide with my Easter hols from work).  Perhaps I should have splashed out on a nurses outfit too …

(Day 166, NO DIALYSIS!!!)

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!!!)