Monday, 26 January 2015

14 days and counting...

Yeah, I probably shouldn't count, but quite frankly, who could resist?

All of the lists!

In preparation for my stay...I've made lists upon lists upon lists. I've updated calenders of both the paper and electronic variety (those I can carry with me and those I can see on the wall).

All of the lists....with added calendar dog maintaining 'but...whhhyyyyy' expression
Seriously, I cannot stress how much I'm thinking about what's going to happen.
Not in concern, fear or worry...honestly...I'm now excited and just want to do it. Since I've listed the symptoms that've slowly crept up on me over the years, which I've taken to be perfectly normal....I now want to know how many are just me and how many are failing kidneys.
After using one of my symptoms as an excuse, I was told 'you realise after the operation you're not going to be able to use that an excuse anymore right?' to which I responded, 'I know...I can't wait. It's going to be great'.

Symptoms I've always thought were normal, but it's possible will go away after this:

  • Hiccoughs...the ones I do usually after I've eaten or drunk something. Very light, usually about 3 of them.
  • Breathlessness....pretty much...always
  • Being constantly tired
  • Tremors 
  • Physical twitches that happen all over my body (including my eyes), worse when I'm lying down and resting
  • The double blink...something the eyes tend to do when they react in shock to something...mine do it randomly every so often. It's just a twitch.
  • Frothy urine...yeah I thought this was normal
  • Lower back pain which occurs if I stand around too long
  • Leg ache which occurs when I stand/sit in one position too long. The most comfortable position for me these days is lying stretched out....or with my legs crossed under me in a state of constant tension (unfortunately, this then leads to pins and needles when I stand back up).
  • Chapped lips...apparently this is part of anaemia and renal failure! Who knew! I've had this for a while now, no matter how much water I drink or how much olive oil or honey I use (it's better than chapstick which actually dehydrates the lips). I've now learnt this is apparently a symptom. Not a vanity thing...just really sodding uncomfortable and has me constantly chewing my lip without realising.
  • Persistent, dry cough with no result

On top of the lists, Tom and I are now preparing the house so it's easier to clean. We're not going crazy and I'm not becoming a germaphobe...I'm just very aware that within the first month or so, I'm more susceptible to illness. So, no...y'know...licking people with chicken pox as I told the consultant who gave me a look, then said ''.

Assessment physical

Another form of preparation was the physical assessment appointment we went to the other day with my sister-in-law, and both our mothers.

Despite the appointment being at 1pm, we aimed to get there earlier so I didn't have to rush the last 10 minute walk. This was a good choice to make given I was so high strung, I was hit by 2 mild anxiety attacks before we left the house. Mild because I felt them as aggressive adrenaline rushes and Tom and I swiftly realised we shouldn't talk because I just kept biting his head off for no good reason.
Arrived to see my donor and mother in law already there. We popped up to registration to confirm I could have lunch before the tests, made out way back slowly to the other two as I was feeling a touch off, then bam....a third attack hit me. Fortunately, this one was the biggy I'd been waiting for and Tom was able to work me through it, then I was back to my old self again. So we grabbed a quick lunch, had a chat with our company then made out way to the waiting area.

We both had our blood pressure taken, then were told to take a seat.
And thus was the start of one of the longest days we've encountered....yet:
  • First up, a detailed consultancy by another specialist who corrected us on a selection of facts I was wrong about - 
    • After the operation, we won't be in the ICU, but the High Dependency Unit, which is apparently a lot better and less worrying than the ICU. My donor will be there a shorter length of time than myself.
    • I should be in hospital for about 7 to 10 days...longer if anything should happen. I'm keeping open minded about the fact that SOMETHING might go wrong. Not pessimistic...just open minded. However, I don't want to stay in for long so will be working towards a quick recovery any way I can.
    • This is the most basic form of operation you can have as I've a living donor, we're both in pretty good health, both everything should be fine!
There's still a risk of rejection, clotting, infection etc etc etc which could extend my stay, but otherwise, I've the doctor's are telling me it's in the category of being a very simple transplant. Maybe that's why I'm looking forward to it so much....

So! List of tests for the day:

  • X-Ray: this had to be done twice as apparently my arms were longer than she realised so she had to readjust the machine as, when I inhaled, a tiny patch of my lungs were cut off from the image.
  • ECG: lying on a bed with a heart monitor attached to my left and 5 seconds later I had the read out for the nurse. 
  • Blood test: I went for this as Tom kindly went to pick up the anaemia injections I'd not taken in 2 weeks (memory loss and an order going weird got in the way of my usual prescription). I waited around for the blood test just in time for Tom to be able to join me as I suddenly saw the number of vials I was having taken and requested his presence in case my recent anaemia made me conk out mid-take. That and his weird conversation was useful as a distraction. The nurse, however, was wonderful, as I prewarned her so she lowered the seat til I was almost horizontal, then seemed to notice when my wooziness kicked in and told me to start taking deep breathes. 
  • Swab test: for both up the nose and within the hip/thigh crease. Just as glamorous as it sounds. I think they're to check for infection? Do the deed then cue my spending the next 2 minutes trying to return the swab to the container, then turning to Tom for help to which he responds: 'Did you take the white lid off the container?'.....I....had not.
  • Surgeon consultancy: now this is where the waiting really began. The surgeon had been called into emergency surgery earlier that afternoon as a cadaver kidney had been made available. Once we were told this, we had no issue with was just...long...and I was feeling extremely woozy and my legs were starting to complain as they do when my circumstances become unpredictable and I don't feel like I can stretch out comfortably. The legal team with whom we had the final interview then arrived, but we were told it wasn't possible to see them first, due to the format the interview takes. Damn.

I was slowly starting to crack as my legs began to ache more and I needed rest so, as the previously stuffed waiting room was now emptier, I took the opportunity to lie on three seats available close by. Had the crap scared out of me a nurses came by to wake me. Urgh, I didn't have to move did I? Well, yes...but only to a lounger in one of the rooms if I preferred. The people in that department are made of all the amazing. I agreed and was led into an empty consultancy room.
After briefly dozing, there was a knock on the door followed by an extremely apologetic voice, informing me that the room was needed. No problem as just as I left, the surgeon was now ready for us.

The Surgeon/surgery

We were greeted by a Greek man with an unpronounceable name (Popa something) and immensely likeable attitude. He spoke very seriously about the operation...a combination of experience and 'I'm no stranger to this speech. However, every so often he'd look at the three of us, realise we all looked intensely serious and, completely deadpan, make an amusing observation, which cracked a smile in all of us...including himself when he saw us smile.
I was going to write a list of the things we learnt from him, but now I'm wondering if I should as that was part of the assessment we had with the legal people later. What I do feel safe in saying is, my main concern as a patient was being bumped into after surgery.
Apparently, the kidney will be placed just under the ribs (without removing any), near my pelvis, so if anything, it's in one of the most protected areas of the body and I shouldn't even notice it's there. As long as I don't jump into playing rugby or weight lifting...should be fine.
What appealed to me was his attitude. He'd just come out of surgery, later that day he had ward rounds then a bundle of e-mails to answer. And yet you could feel how focused his mind was and the care and concern he had for his patients. This is a man who, despite the weight of the work load, is committed to the job and still has bed side manners to make the patient feel reassured.
At the end I shook his hand, looked him in the eye and got exactly what I'd expected/hoped for: a really strong hand shake without being bone crushing...and steady eye contact. Perfect.
This is one of the reasons I'm happy to go ahead with this transplant...I came away feeling as if everything was in hand by a team of people who knows exactly what they're doing and the reason appointments take so long is that they personally and carefully attend to each and every patient they see. It must be exhausting, but they clearly put a hell of a lot of commitment into what they do, handling hundreds of people's lives.....every day.
Even my donor, who lives outside London, will be staying potentially a touch longer, despite there being a renal clinic where she lives, so they can personally keep an eye on her and ensure her safety.

Legal Assessment
The interview to ensure the kidney isn't being given up for money or some kind of bribery. donor and I sat in a room with a man who I'm convinced at some point in his life was a primary school teacher or something. He had a slight bumbling, jokey attitude and gave the impression his mind was here, there and everywhere, yet he was clearly completely on the ball.
Despite, by now, being exhausted and wanting to go home, what amused me most was spotting the questions he asked which were clearly designed to throw us off guard. But only threw us off guard because they were so randomly obvious.
We interviewed together and presented all the required details. Then the donor interviewed by herself, then I interviewed by myself. Which was slightly terrifying as some of the key questions were initiated with the statement 'do you remember how/when....'
Fortunately, however, I think the guy could tell the difference between someone with actual memory loss and someone trying to remember things they'd previously rehearsed and were putting on an act. Though I did notice his ears prick up when I mentioned I was a freelance actress. Hah!

And we were done. I think it was 6.30pm by then and I was exhausted. I had wanted to take up mum's offer of going out for a dinner with everyone, but I kept fantasising about going home and curling up in the corner, so knew going out would just make me feel worse.
Got home, unwound, went to bed.....and woke up at 5am with a banging headache. Took paracetamol, went back to bed and woke up again knowing that, just no...this was going to be the rest of my day. I felt pretty sodding awful. Clearly my body had been under more of a strain than I realised, so I didn't leave the sofa all day, and was extremely thankful for my donor's company (as she'd be staying with us over the weekend). We spent most of the day chatting and playing Minecraft and despite feeling like I'd been stomped on...I was really grateful for her presence.

Appointment with specialist on the 30th and hopefully (all fingers crossed, knock on wood, kill a rabbit to wear its foot and all that stuff), nothing bad will have arisen from the tests and everything will go ahead.
I swear I don't know how I'll feel if something does delay it.
Again...14 days and counting...

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