getting in the way of life

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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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!!!)

… is it because i lied when i was seventeen?

Yesterday was the four month anniversary of NO DIALYSIS!!!  Time is whipping by at an extortionate rate and we’re still waiting for an appointment to come through for the hernia operation.  Blokey has suggested dates; we just need the surgeon to confirm one of them.

The operation will involve a four or five day stay in hospital and there’s only a 30-40% chance that it will be successful.  If it happens again the surgeons will probably refuse to operate again because the chances of it happening again will then be even higher.  To say that Blokey is a tad irked would be a very big understatement.  If they hadn’t insisted it was just a collection of fluid this could have been rectified sooner, the tear wouldn’t have become as large as the incision made to insert Our Kidney and Blokey would be enjoying life a little more.

Yes, we shouldn’t grumble.  He’s alive, Our Kidney is behaving marvellously and there are many oodles of billions of folk in the world who have shittier lives than Blokey.  But this is OUR life, and we expected it (if the transplant was successful) to be an even better life that it currently is.

I am not a haemoD widow anymore … I am simply a Star Wars: Republic widow instead.  He’s still playing it; shouldn’t he be a little bored by now or do men not get bored of their online games?

*sigh*

(Day 124, 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.