Blokey’s WBC has recovered and his kidney function is stable!
It’s his birthday on Sunday. It will be a very happy birthday.
(Day 752, NO DIALYSIS!!!)
Blokey’s WBC has recovered and his kidney function is stable!
It’s his birthday on Sunday. It will be a very happy birthday.
(Day 752, NO DIALYSIS!!!)
Last week we discovered we had a problem with our landline; we were getting somebody else’s phone calls and when I tried to ring Mumsy she didn’t know it was me because her caller id said, I don’t know who it is and *shrugged* in the way that only landline phones can.
It meant that if Hospital had been trying to get hold of Blokey they would have failed, but we were sure all was fine because they usually try his mobile if they can’t get through to the house. Ten minutes after British Telecom had rectified the situation (apologies were not received, bad BT) the phone rang and Blokey found himself talking to Hospital, five days after his clinic appointment.
Your white blood count (wbc) is rather low, they said. Please decrease your CellCept even further to 250mg twice a day and make an appointment to have your blood taken at the GPs surgery in two weeks, not four.
Blokey picked me up from work that day (our wedding anniversary) and we saw Bill Bailey (very funny man) in town so I didn’t have a chance to do some research on the Internet to put his mind at rest until I got into work the following morning; he was convinced it meant Our Kidney was beginning a rejection episode.
It isn’t a rejection epsiode and is apparently quite normal/common in transplant patients, due to the drugs. Obviously it’s not particularly good and can lead to further complications, but at least it definitely explains the mouth ulcers which won’t heal and the sore throat which won’t stop hurting.
Yesterday I was a Good Girl and toddled off to see the nursey for my smear. Yuckity yuck yuck. What makes it even worse is the running commentary whilst she’s doing it. Her first words as I did her bidding and spread my knees apart was, Oh, I do get to see lots of different pretty [where the fuck is this going, I panicked in my head] toenails. Oh, thank goodness!
And then she’s gabbling on about just putting this up and now I’m twiddling it about because I need the very centre of your cervix and oh look! as if by magic there it is and now I’m just taking a sample are you ok? good. And all the time I’m lying there thinking, please shut up! but not saying it because I think her intention was to make me feel more at ease and in a silly way it did actually work. Now I just have to hope that it comes back clear because I really don’t want to go through it again. I was supposed to have it done in June as that was three years since my last one, but I’m the sort of woman who puts it off until her Blokey threatens to tell her mum.
On my way out I stopped at reception and asked if I needed to fit a certain criteria to qualify for a free flu jab, which I’ve never had before and wouldn’t have had this year if Blokey’s wbc hadn’t been too low. Oh, yes. I’m afraid so, said the lady. Ok, I only have one kidney and my Blokey is on immunosuppressants due to having had a transplant. Does that fit the criteria? She had to ask someone but they said it was fine. I can fit you in at 9.54 tomorrow morning, she said. She must have made a note on my records to say that I was allowed for free because of Blokey because when I went in this morning they wondered where he was. Oh, he had it done through work, I said. They made a note on his medical record.
After she made me sit down she waved the needle around and told me that I might find it a little sore later today, then she said I could go. Eh? Have you done it? I asked. OMG! (< in my head that sounds so gay!) When I was little having a needle stuck in your arm was the worst thing EVER. This didn’t even hurt. I didn’t even need a lollipop to make it all better, or my Mumsy’s soothing voice to calm me down.
Still, best not get complacent; next time it will probably make me cry.
(Day 739, NO DIALYSIS!!!)
Today is our two year kidneyversary.
Yesterday I was a bit of a bitch to Blokey. I make him sad and I make myself sad. I’m going to get it rectified. I tell you only so you don’t think we live a life of bliss. The life of unbliss isn’t connected to the donation and transplant, but sometimes life isn’t all harmony and roses.
But today is a HAPPY DAY! At this moment two years ago I was drifiting in and out of consciousness. It becomes more surreal with every day that passes and sometimes I’m convinced it happened to somebody else.
As it’s also our wedding anniversary on Monday, we’re going out to our local Indian restaurant for a tasty celebratory meal tomorrow night. I might even get tipsy.
Blokey had a three-month clinic appointment on Wednesday. Delectable Dr. Neph, Phwoar! told him to cut one of his anti-rejection drugs (the CellCept I think) from 750mg twice a day to 500mg twice a day. There is no reason for this other than the length of time since the transplant. In a month he has to see the nurse at our GPs surgery for a blood test; *fingers crossed* the decrease doesn’t mess with Our Kidney … I know they wouldn’t decrease it if they were worried, and that the decrease is a good sign, but it’s still a month of worrying until he has his blood tested and the results come back in!
The nurse at the clinic checked his moleyness for signs of cancer. All is well there, too.
I need to have my two year check-up soon. I think I’ll get my smear (*yuck*) out of the way before I arrange that. I can’t have too many medical things going on at once.
Anyhoo, here’s hoping for many more years of blogging about kidneyversaries!
I got flowers from the love of my life today. Feel free to enjoy them with me …
(Day 731, NO DIALYSIS!!!)
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.
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!!!)
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!!!)
Blokey doesn’t often forget to take his medication to work with him (he takes it at about 9.30 every morning) but if he does forget to take it with him it’s always on a Friday. This is apparently my fault; I don’t work Friday’s. What this truly means is – quite simply – nobody gets up before him to put all his things together ready for him to grab and go.
Obviously those pesky little pixies have Friday mornings off work, probably because they’re tired after magically tidying the house on Thursday evenings.
(Day 563, NO DIALYSIS!!!)
It isn’t a secret that once upon a time I was against having my organs whipped out of my body and transplanted into someone else after my death. In fact it’s a cause of much merriment that I went from being so very mortified about the idea to then giving little thought at all to becoming a living donor. The sadness behind this is that had I died in such a way that my organs could be considered for donation, my nearest and dearest would have said, ‘No!’ and thus those who really needed them would have been deprived.
Thankfully I didn’t die.
Perhaps it is for this reason that I don’t view those who say they don’t want to donate as selfish. I also don’t need to know their explanations; as I’ve said before I do believe it’s a personal decision and one we shouldn’t be judged on.
But I do believe that we should have an opt-out system of organ donation in the UK.
There’s an article on the BBC today about how the number of people donating organs after death has increased by 50%. I’m not sure how factually correct this is; it could simply be that transplants of certain organs [for example, corneas] have progressed to the extent that they’ve become ‘easier’, but percentage wise it looks good, right? The article mentions (not in detail) how some people have said that an opt-out system is needed and obviously this brings the ‘over my dead body!‘ brigade out in their droves.
Some current carriers of ‘I’m on the donor register!’ cards claim that they’ll opt-out purely on principle.
“It’s my body!” they scream, loudly. “Nobody has the right to take away my control of my body!“
[as an aside there's a cynical little bit of me which thinks that they're mostly concerned about the fact that they're not choosing to do a Good Thing; how can they look so perfect if that choice has been taken away from them ...]
In part I do agree with them. You should have a say over what happens to your body after death, from donating organs to choosing whether to be cremated or buried, to making the decision to have a solid oak coffin over a simple wicker casket.
My response to this is that an opt-out system actually makes it easier to have control over your organs being used after your death. We live in an apathetic ‘I’ll do it later’ society, where we don’t talk about our deaths with our loved ones. Those who are so vehemently against an opt-out system/having their organs donated will opt-out. They will take the howevermanyminutes it takes to do so, because they feel so strongly about it. An opt-in system doesn’t create the same powerful surge of emotional responses; with an opt-in system we all just shrug our shoulders, assume it will never happen to us and promise we’ll get round to it tomorrow. It’s lacking in both depth and debate. We need a good shake-up.
And that’s (quite simply) why we need an opt-out system in the UK.
(Day 541, NO DIALYSIS!!!)
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?
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!!!)
I wrote the following back on the 6th January. I didn’t post it, not because I didn’t want to but because I thought I had.
“Yesterday I finally received the results of my Hospital check-up (only two months and a couple of days after the Event itself.) I am pleased to report that having Googled all the results I *think* I’m pretty much the perfect specimen of Human Being-ness, with my remaining kidney behaving as it should.
*takes a[-nother] bow*
(Day 346, NO DIALYSIS!!!)”
I *think* that I toddled off to check that my results were good before I posted what they were and looked a complete plonker when some wise person pointed out that actually they were a tad skewy.
These were my results:
Blood Pressure 120/76
MSU – normal
Creatinine 76umol/l (equates to 0.86 in AmeriSpeak)
I was a trifle worried about the eGFR but it transpires that I don’t really need to be. My creatinine is near perfect (I think) and they tend to go by this more (I think, again … I’m full of thinking today).
I go back for the second anniversary in October and then I’ll just have to pop to my GP and request renal function tests for years three and four. Year five I’ll be back at Hospital to see the living donor team again. I have no idea what happens at year 6 …
I also have no idea what most of those results above mean, but hey-ho. Life goes on.
We’ve been away this weekend, sampling the delights of the Norfolk coastline and the joy (ha) of spending time together. I realised that I still worry about Blokey’s peeing ability. I went copious amounts of time and he went once (during the day). I expect I’ll always worry about it, which is just another sign that we’ll never be completely free of this; we’ll always be expecting the worst to happen because one day it will happen. We can’t escape that. But won’t it be lovely if it doesn’t happen for thirty years and by the time it does happen some new-fangled research has made life with no kidney function to be a doddle?
*fingers very crossed*
(Day 474, NO DIALYSIS!!!)
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.
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.
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!!!)