Oh, he came home on Day 187, NO DIALYSIS!!! I thought I should mention it in case anybody thinks he’s still enjoying yummy Hospital food.
Everything is seemingly back to normal now. Blokey has been back at work since Monday, and he is still upbeat and fairly happy. His creatinine is practically normal and he’s peeing, properly.
Life is good.
(Day 198, NO DIALYSIS!!!)
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.
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!!!)
I am an enigma. Or I’m not.
Take yesterday … I was sitting at work randomly checking the news before heading off for home and discovered that twenty+ children had died in Switzerland. I nearly blubbered like a baby, but stopped myself because blubbering like a baby at work would be a trifle bewildering for my colleagues. The thought of the tragic accident, the scariness for those involved and the awful wait for news by families back home made me an emotional wreck.
Forward through to today and I clicky on a linky posted by Living Kidney Donation on Facebook. Instead of becoming emotional at what I was reading, I began to snarl and grumble.
This leads me to the realisation that I’m a bitch.
The post read (in my head): I’m a [whinging] mother of two little kids who suddenly developed kidney failure last year and didn’t keep my PD access site clean so ended up in hospital. I had to wait a week [i don't think so, petal] to have a neck line put in so that I could have temporary haemoD. I was lucky enough to have a whole two (yes, TWO!) people offer me their kidney, but neither was a match. My husband [you don't say if he offered you his kidney] set up a Fb page for me but nobody else has offered. Oh, woe is me. Please give me your kidney; I am more worthy than the little old lady (because she is old) and the childless (because obviously their lives have no meaning) and those who have been waiting for years (why should I have to wait for what should rightfully be mine). Oh, and before I forget, here’s a little poem my daughter wrote so that you’ll step up and give me what I want because the tears won’t stop streaming down your face. Won’t someone please think of the children!!!
This sort of thing really irks me. I do have sympathy for other people who are living with disease, most particularly kidney disease and failure because I understand first-hand (from a second-hand point of view!) what they’re going through and what they need to do in order to keep surviving/living. But this whole begging for something leaves me feeling queasy, and social networking online has made it very easy to beg.
I don’t know why I feel so uneasy and annoyed about this. Perhaps it’s because I was taught (through experience of poverty) not to ask for something that seems out of reach. Maybe it’s because I believe that if something is going to happen, it will happen regardless of how much effort you put into it. It could simply be because I know of people who don’t have the supportive network to be able to achieve this themselves and it feels like those who do/can are rubbing their supriority in the faces of those who don’t/can’t.
There are thousands (and thousands and thousands) of people around the world who are in desperate need of a kidney, and I don’t believe that any of them are more important, or more deserving than their kidney-failure-neighbour. You don’t become more deserving because you’re only in your thirties, or because you have precious children, or because you have a better job. You don’t even become more deserving purely because you’re able to tell your story in a heart-wrenching way, emotionally manipulating people into making what would inevitably be one of the biggest decisions they will ever have to make. You don’t become less important because you’re working class, or told a fib when you were seven, or forgot to say ‘sorry’ once for a minor misdemeanor.
I wonder if either of the two (yes, TWO!) people who weren’t a match offered their kidney for non-directed altrusitic donation, or for a paired donation. I even wonder if the woman in the article knows that some people don’t get offered a kidney ever, despite large and loving families and big friendship groups.
I think my biggest twirlypop is that it just seems so unnatural to be all feisty; I’m a very private person. GiL (who will now one day become SiL due to her recent engagement to BiL) was urging me to contact all the magazines and newspapers, wanting me to receive national praise for my heroic act of love and devotion. But I’m not a hero, and I donated my kidney out of love, not a need to be praised, or thought of as a better person. In my new job nobody (except the interviewers and the OH nurse) knows that I’m a donor and I want it to remain that way as long as possible. I’m just an ordinary girl, living an ordinary life and I did nothing extraordinary.
Please don’t misunderstand me; it is vitally important that those unaffected by kidney failure realise the cruciality of kidney donation, whether cadaveric or living. Living with kidney failure is harsh. There are fluid restrictions (including that found in foodstuffs), food restrictions, so many tablets to take, so many appointments to attend, so many operations to go through. Everything (weekends away, holidays, family functions, work, DIY, nights out at comedy shows/gigs, etc.) is difficult. Knowing that any day could be a Hospital day and never knowing if you’ll get out at the weekend because of exhaustion makes planning ridiculously silly. Having to explain why you can’t do something is difficult. People who don’t get it, when you’ve explained it eight zillion times already, are frustratingly irksome. And without a transplant (which is not a damn cure, MiL!) this will be the rest of your life. No remission. No Good News. Not ever. This disease is for life, however long life is.
There’s a brick wall … bang your head against it.
Some articles are good. Some Fb pages are good. But I think these purely begging articles/Fb pages are sending out the wrong message. And as more people jump on the ‘i deserve a kidney’ train and offer their ‘woe is me’ story, so more people are going to get left behind. And who will be their advocate? Who stands up for those who don’t have anyone to help them?
And does this ultimately make them more deserving of your kidney than the woman with a loving husband and beautiful children and massive support network?
(Day 149, NO DIALYSIS!!!)
At the weekend we helped my MiL celebrate her 94th 63rd birthday.
Blokey is no iller than I am now!, she declared in a most enthusiastic way.
Her ignorance is not endearing in the slightest.
(Day 135, NO DIALYSIS!!!)
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!!!)
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.
Blokey returned to work on the 3rd of January (Day 77 and still NO DIALYSIS!!!)
I am pleased to report that he hasn’t been feeling really tired. I’m not sure if he is and it’s being masked by the fact he’s still playing his online Star Wars for Grown Men game, or he really isn’t. I’m going with the latter because it’s more brilliant.
I thought that normality post-transplant might involve a little more help around the house, but it appears I was wrong. There are times now when I want to take him by the shoulders and shake him till he bursts whilst screaming, Why won’t you help meeeee?, but the feeling is fleeting and I just plod on. This is helped by the fact that I started my part-time three-day-a-week lowly-paid job this week too and so I’m happy to do what I do as way of balancing everything out.
And because I still have a need to be in control.
*grin*
Me? I’m fine, thanks for asking. I even got groovy with some Just Dance 2 on the Wii this morning for the first time post-surgery. Wow, I am SO unfit right now …
(Day 79 and still NO DIALYSIS!!!)
Christmas was a bundle of joy this year.
Or, it would have been had my MiL not grumbled copiously about dinner. Oh, I didn’t cook it … we went to the pub. Unfortunately we went to a different pub to the one we normally go to, at the request of my MiL. Ergo, it’s her own fault that she had to grumble and next year I’ll put my foot down and insist on going to the place we know and love.
But it really was a bundle of joy. Blokey is still a little iffy with regards drinking and was worried about the sudden spike, and subsequent dip, of his creatinine levels. We didn’t have to think about fitting everything in around haemoD and he didn’t actually have to limit his fluid intake. Plus, he could eat what he wanted! Wowsers!
I did miss the present from the dialysis unit though.
*sigh*
Interestingly, Blokey is becoming more flippant with regards his fluid intake. Before the transplant he was completely AdamAnt that he’d have no issues with drinking and it would be a breeze! He was wrong (he often is) and it’s only in the last week or so that he’s been drinking (what I would term as) normal amounts. Yesterday we had his post-Christmas clinic and he’s been waiting for a phone call all day. It’s a phone call which hasn’t materialised and for that we are grateful; it means there’s been no sudden spikes or dips, and no helter-skelter results. Phew! He does still have a large (prominant) fluid collection but he was assertive yesterday and Mr. Neph, Phwoar is going to speak to the surgeon about what to do next.
His next clinic isn’t until the eleventh. He’s back with the local anti-coagulation clinic for his warfarin, and on Tuesday he’ll be returning to work.
Life is beginning to resemble ‘normal’ once again (with the added bonus that ‘normal’ doesn’t involve haemoD three evenings a week!)
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).
