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!!!)

sniffles

Blokey has had a cold man-flu this week.

Whenever he gets the sniffles I can’t say a bloody thing. Whatever I say, or do, or however I act, it apparently shows that I resent him being ill.

Everyfuckingtime.

I’m of the opinion that he perhaps needs to look up the word ‘resent’ in the dictionary, whereby he’ll find that it says, to feel angry because you’ve been forced to accept someone or something that you do not like, or to feel or show displeasure or indignation at (a person, act, remark, etc.) from a sense of injury or insult.

I don’t resent him being ill.

I do resent him telling me that I resent it.

The truth is that I worry, constantly.  This worry manifests itself twohundredfold when he gets the sniffles, or an ulcer or a headache.  Or when I think he isn’t peeing enough.  I don’t think I handle my worries well and maybe this makes me act resentful, in his eyes, when he’s feeling under the weather.

I got very angry.  I told him that I don’t resent him and it’s ridiculous that he thinks I do. I went on to tell him that what I actually resent is that I’m not allowed to feel ill and that he doesn’t think I’m ill because it’s all in my fucking head.  And yes, as I snarled those exact words in his general direction I did jab my finger at my head. Then I did the teenage strop and tried my best not to let my Mumsy know we’d had a minor tiff, for she was watching the tellybox downstairs.

Oddly, he’s been quite nice since then. And his sniffles are disappearing.

(Day 856, NO DIALYSIS!!!)

the results are in …

So, I finally have the results from my two year (and three month; she’s not on the ball, my LDC) post-donation tests. I’ve also included the one year results in purple.

BP 131/78 (120/76)
Hb 117g/dl (I’m assuming that’s 11.7g/dl otherwise it’s very much increased since last year!) (12.1g/dl)
WBC 8.6 (7.0)
Plt 293 (209)
Na 138mmol/l 140mmol/l
K 4.4mmol/l (4.7mmol/l)
ALT 20u/l (I don’t think I was tested for this last year)
Urea 7.4mmol/l (5.3mmol/l)
Creatinine 60μmol/l (0.68 in AmeriSpeak) (76umol/l)
GFR >60 (79)
No blood or protein in urine dipstick and all other urine tests normal

The recommendations at the bottom (this is the letter which is sent to my GP) state that my blood pressure only just falls into the category for LKDs. *sigh* … my blood pressure has always been so perfect.  My Full Blood Count bloods Red Blood Count is 3.78 so falls just below the normal range, as does my Haematocrit which is 0.345.  They’d like these repeated the next time I’m visitng my GP.

*another sigh*

Other than that I think I’m in fairly good physical health. Mentally, maybe not so …

(Day 855, NO DIALYSIS!!!)

Phew!

Blokey’s WBC has recovered and his kidney function is stable!

*happy dance*

It’s his birthday on Sunday.  It will be a very happy birthday.

(Day 752, NO DIALYSIS!!!)

Kidneyversary

Today is our two year kidneyversary.

Whoop!

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.

Phew.

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!

*smile*

I got flowers from the love of my life today.  Feel free to enjoy them with me …

 

 

 

 

 

 

 

 

 

(Day 731, 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!!!)

and the results are in …

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
Hb 12.1g/dl
WBC 7.0
Plt 209
Na 140mmol/l
K 4.7mmol/l
ACR <0.6mg/mmol
Urea 5.3mmol/l
Creatinine 76umol/l (equates to 0.86 in AmeriSpeak)
eGFR 79mis/min

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!!!)

Shush, now.

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.

*grin*

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.

Humpf.

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!!!)

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!!!)