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!!!)

english idiot

So, Blokey was sorting out his medication last night, popping it into the two seven-day pill boxes that he has. He paused for a moment and looked into space. Then he turned to me and said, I’m not supposed to be take 750mg of this anti-rejection drug twice a day, am I? It’s supposed to be 500mg twice a day.

D’oh!

Goodness knows how many weeks he’s been cocking that up (at least two, maybe four, probably not more). He’s put himself back down to 500mg twice a day but he has emailed his nurse-y lady at Hospital (and someone else, I think) to hopefully get a swift response.

Idiot. And I mean that in the nicest possible way, obviously.

(Day 858, 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!!!)

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!!!)

too few white blood cells

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!!!)

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 …

flowers

 

 

 

 

 

 

 

 

 

(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!!!)