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!!!)

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!!!)

panic over!

Dear Fate,

Yes, I tempted you. Very funny.

Love, KatieF x

(Blokey just phoned me because Hospital phoned him following his – howareyougettingon – clinic yesterday.  I was able to do my whole there there speech, thus feeling useful again!

His creatinine has risen to 185 [2.09 AmeriSpeak] from 154 ish [1.74 AmeriSpeak] and they want him to have a clinic appointment in two weeks rather than four weeks.)

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!!!)

Day 100!!!

Today marks 100 days (NO DIALYSIS!!!) since my kidney became Our Kidney.  It’s also my Big Brother’s 43rd birthday, but that’s by-the-by.

Life is ‘normal’.  Or, it’s as normal as it will ever be.  It’s nice and we do things without worry.

Except, there’s one minor issue and it will involve a couple of days in Hospital followed by a few weeks off work.  Oh yes.

Blokey is bumpy.  Well, he has a bulge, quite a prominent one, above Our Kidney.  They (Hospital) were convinced it was a collection of fluid, but because of its lack of proximity to Our Kidney they weren’t particularly concerned.  Finally Blokey receives an appointment for an ultrasound scan and he dutifully toddled off on Tuesday (Day 98, NO DIALYSIS!!!) to have his belly smeared with cold gunk.  This was followed by a regular clinic – howareyouvettingon – appointment on Wednesday (Day 99, NO DIALYSIS!!!) where they kindly informed him of the fact that he has …

*drum roll*

… a HERNIA!!!

Hospital told him that the surgeons would want him to lose weight before they could operate.  A flabbergasted Blokey went a trifle ballistic (or so he says) and pointed out that he weighs only 2kg more than he did when he received Our Kidney, and – more importantly – this was their cock-up (they should have realised earlier) and he expected them to rectify the situation as quickly as possible.

They agreed.  We expect the operation to take place in the next 4-6 weeks.  He’s not a Happy Bunny, but I’m relieved that it isn’t something more sinister.

We would complain, but we know it isn’t worth it.  The last time there was a major cock-up Dr. Silly Neph advised us to write to PALs, which we did.  Then we had a reply from Dr. Silly Neph himself telling us it had been looked into and they were closing ranks.

*scratches head*

Apart from that, life is good.

 

 

Losing a kidney, but gaining a life (part the third)

It’s a massive disappointment to discover that they didn’t do the whole ‘Can you count backwards from 10?‘ scenario.  Blokey had assured me that this would be the case, and that I wouldn’t manage to get past the number 10.  Mr Anaesthesia was obviously of the opinion that counting backwards was not for me, instead preferring to insist that my last words signified intoxication and merriment.  Cheers!

So one moment the room was spinning and the next I was choking.  Except I wasn’t choking; I can only assume that I was beginning to wake up as they removed the tube from my throat.  I didn’t even mumble any funny business as I came round.  All I could manage was a feeble It hurts! when they asked if I was okay.  I remember little about the recovery room.  I do remember that it was full (I say full, but there were perhaps four or five other patients in there) and we were all in varying stages of wakefulness.  I was asked how much pain I was in (scale of 1 – 10) and I think I said 7, but I can’t be sure.  The nurse made sure I could use the pain relief button attached to my left hand.  Yeh!  (It didn’t actually work that well, I don’t think.)

I was back on the transplant ward by 3pm and five minutes later my Mumsy joined me.  Looking back now, I am so pleased she was with me even though I was so groggy that I barely really noticed.  Who else was going to help me sip water through the straw and hold my hand?  She informed me that she’d arrived at the hospital at 12.30pm and had a lovely natter with the Living Donor Lady who rang down to theatre and then told her that my kidney had just been removed and was about to go through to Blokey.

I have only vague recollections of the remainder of Day Zero.  Apparently one of the first things I said to Mumsy was that two twelve year old boys had been in the operating theatre watching the transplant.  A doctor came to see me at one point and did a bit of prodding.  At some point in the darkness of the middle of the night he took bloods because he was worried as my BP was so low (it got down to 72/49 at one point).  I slept mostly, except for those occasions when a nurse took my blood pressure and whispered that she wanted to know how much pain I was in.  Mostly I was on a pain of about 4.  Even when it was worse, or better, than the previous time I still said Oh, about 4, simply because I had nothing to judge it against!  I don’t know how much pain I was in! I just know that sometimes it was excruciating and other times it wasn’t.

Oh, and the urinary catheter?  Sheesh, what am I like?!  I didn’t even realise it was there.  *happy face* … It was, however, a bit weird not having the need to wee.

Night-time was horrid.  I didn’t really have a clue who was on my bay in the ward, but the noises were sickening.  I refuse to go into detail though.  I slept in the way that groggy people do … fits and starts.

NO DIALYSIS!!! Day One:

Breakfast?  I don’t think so!  Do I look like I want to eat something?

*sigh*

A team of doctors arrived and squished my belly around.  They noted that my BP was steadily rising, although still not quite normal.  Then another doctor came around and decided that my catheter and cannula could be removed, as could the pain relief.  Apparently I was barely using it.  This may account for the reason it wasn’t working very well.

D’oh!

At some stage I must have asked about Blokey, but I honestly have no recollection of doing so.  This makes me feel heartless, but I think I was in so much pain and discomfort, plus I was fighting off copious waves of nausea (I am vomit-phobic) so I had little chance to actually think.  I was also aware that they would have told me if there had been any complications, and they hadn’t, so he must be okay.  I got to find out at about 2pm on Day One.  The nurse removed my catheter for me at 1pm.  It didn’t hurt, at all.  I’ve finished! she said.  Really? I replied!

Mumsy arrived soon after and we walked round to Blokey’s private little room.  He was fine!  His pee was red, but HE WAS PEEING!!!  WooHoo!  I was told off by the nurse for not wearing the gloves and apron.

*sigh*

He wasn’t even MRSA positive! Dimwits! As it transpired, he was actually happy to be negatively-positively MRSA free because he liked having his own room for the duration of his stay.  He didn’t have to suffer the embarrassing noises, or the snores, or the humiliation of attempting to throw up in a room full of strangers and being unable to, instead making ridiculous gagging noises.  The woman in the bed opposite mine was lovely though … We’ve seen it all before, she laughed.  She’d been in for ten weeks, bless her (bowel related, not kidney).

I attempted some food that evening.  Scrambled egg and mashed potato.  How’s that for a combination?! I struggled through the scrambled egg but left the potaoto.  It was manky.  This was a shame because the mashed potato has always looked lovely when Blokey’s had it on previous admissions to hospital.  I’d vowed I was going to have it, and now I vow that if I ever have the misfortune of having to return to hospital I will never eat it again.  I may steer clear of the scrambled eggs in future too; they came back up less than an hour later (thankfully I made it to the loo in time, although I very nearly didn’t; I had visitors and thought they would never go away and I’d have to grab the sick bowl and do it in front of them!)

And speaking of toilets, oh my gosh!  Why did nobody explain to me that I’d have to wee in a bedpan?! ‘Tis okay, I could do it in the privacy of the bathroom, but peeing in a bedpan?!  With four of us in the bay the toilet quickly became a storing room for bedpans of wee.  It’s amazing how quickly your feelings of humiliation bugger off when you’re in such a situation though.  I mean, two of the women had stomas (I had no idea what they were till I got home and looked them up) and one of the women made constant noises and needed constant clearing up.  In comparison my feeble attempts at recovering from a major operation were daft.

I did sleep a lot on Day One, but found sleep difficult as the sun went down.

NO DIALYSIS!!! Day Two:

I managed breakfast (toast) and then the doctor said I would probably be able to go home that day, but only on the proviso that I’d managed to do a poo open my bowels before I scarpered.  I was happy with that … having a poo bowel movement couldn’t be too hard, surely!? I’m a pretty regular goer in normality, after all.

I was a tad bored on the morning of Day Two so I wandered down to see Blokey (remembering the gloves and apron this time!) and we had a little competition to discover who was in the most pain.  He thought he was, and I thought I was.  It was a draw.  He was STILL PEEING!!! which was lovely.  But he was miserable.  I hate seeing my Blokey miserable, and it’s even worse when there’s nothing you can really do to help because you’re in SO MUCH PAIN yourself!  Day Two was lots of worry about whether Our Kidney was actually working well enough.  It was also the day that I found out there’d been some umming and ahhing about taking Blokey back into theatre on Day Zero.

I managed more food at lunchtime (chicken and sweetcorn pasta, which was actually rather tasty) and it stayed down.  After a very sweaty ‘nap time’ (it’s like being at nursery; they turn all the lights off and close all the doors) Mumsy came to see me and we began our adventure with my bowels.  I do need to go, I can feel it, I said.  But I didn’t go.  I couldn’t go.  I think it was partly the fact that I had to go in a bedpan.  The nurse informed me of this when I specifically asked if I had to go in the bedpan. Oh yes! She laughed, We like to see evidence of everything!  It was also partly because opening your bowels tends to involve muscle usage and those muscles tend to be in the abdomen area.  A major operation around the general area of your abdomen tends to make your tummy rather tender.  Straining is not a Good Thing to indulge in!

We walked around the ward lots.  Mumsy was of the opinion that this would cause my bowels to open.  Occasionally on our ward round we popped in to see Blokey in an effort to cheer him up.

My bowels remained closed.

I just wanted to go home and be in pain in the comfort of my own home, with a tellybox and everything!

Dinner was lamb casserole with broccoli.  Again, I was surprised by the yummy-ness of it.  But it didn’t make my bowels want to open.

Eventually I did that thing I didn’t want to do.  I asked for a suppository.  Aaaarrrggghhh!  One of the nurses did it for me; I’ve never stuck anything up my bum before (does that spoil my that girl will do anything non-existent image?!) Are you sure it’s in the right place, I asked her.  Of course, she chirruped! I do these all the time! I know it wasn’t in the right place.  Nobody believed me, but I know the difference between that hole and THAT hole on my own body.

I’m now of the opinion that this nurse was a shit nurse.  I hold nurses in high regard generally.  I think they have to put up with some truly horrendous things and I honestly couldn’t do it, not least because funny smells and nasty pus-filled body parts cause waves of nausea to crash through me.  At about 9pm I was desperate.  Mumsy was saying she’d have to leave soon, and I couldn’t bear the thought of one more night in the hospital.  As there had been a shift change, another nurse tootled on over to insert some more suppositories.  These were in the correct place. Oh yes!  And half an hour later they did their job splendidly!

I knew you were going to go that time, said the lady opposite.  I could see it in your face as you went to the bathroom!

So, I ran stumbled painfully round the ward in jubilation, searching for a nurse. 

I’ve done it! I said. The evidence is in the bedpan in the bathroom.  Please can I go home now?

I don’t need to see the evidence, she laughed.

Who told me they needed to see the evidence?  Oh, of course, it was the shit nurse.

*sigh*

So I poured the evidence down the toilet and packed my bags.  I had (loose) cuddles with Blokey and said a sad goodbye as Mumsy took the bulk of my stuff to the car.  At 10pm on Day Two I was discharged, minus my discharge notes because the printer had broken.  We had a long slow walk (ask for a wheelchair, you numpty!) through the hospital, to the car, complete with a huge bouquet of flowers from Blokey’s work.  Blokey had been told off about them; his boss had visited and brought them in earlier that evening.  He’d been buzzed in and walked past however many nursing staff to get to Blokey’s bay and nobody had told him that flowers weren’t allowed!

It was a painfully uncomfortable journey home (fifty or so minutes) and upon arrival I just collapsed into bed.

Spending a day trying to poo open your bowels is really exhausting.