Saturday, 31 January 2015

Another not unpleasant pill to swallow....

A 4th pill has been added to my collection...because why not!
Went to Watford General on Friday for the last time. It's not the last time I'll be seeing the specialist, but the last time I'll be going to Watford's. From now, I'll be going to Hammersmith hospital which actually has a fully funded renal department. I've been going there for 3 years so....bit of a shock to the system as it was the end of an era for me...

Usual general update, though this time, I informed him that breathing is becoming harder for me: a thicker sensation than usual with tightness at the chest, an active feeling of not getting the full oxygen supply I need.
So my doctor looked at the X-Ray from my physical assessment and, much to my embarrassment, confirmed no trace of Pleural Effusion. Embarrassment because I hate self diagnosing, but considering I'd forgotten to mention the lack of breathe until that appointment, in my desperation, I'd looked online for possible causes and this matched up. bad. I do not in fact have PE.
Tom has now banned me from medical websites which I've been consulting more and more in the build up to my op. Given my embarrassment at doing the one thing I said I'd never do and did in subconscious panic...yeah fair play.
What I failing kidneys. In my case, it's a sodium issue. Yes, the doctor told me I can eat more salt, but apparently it's not enough anymore. My body doesn't retain sodium which means it doesn't do the required oxygen conversion it actually needs to...y'
So...I'm now on Sodium Bicarbonate pills....4 times day.
As I took the first 2 of the day, I realised that if I need to pop them 4 times a day, I need to carry them with me AND might not have water to hand so need to take them without assistance. It seems after watching episode after episode after episode of House (I'm now on S5 episode 23), I'm slowly starting to emulate House himself: I'm ill, mildly irritable on my worst days and I've started popping pills to ease my discomfort.
Yup. Just gimme an IVF I can use as a walking stick, take away any social anxiety and any social filters, give me the fast working brain of a genius....and you won't be able to tell us apart.

Another way of looking at this is that I'm slowly but surely warming my body up for the packs of pills I'll need to take in the future (it's going to be a lot): I started on 2 (blood pressure control and vitamin D) plus the injections for anaemia, rose to 3 with Anti-Depressants and now a 4th to help me 4th musketeer. Technically there were 3, but yeah. Technically...the Anti-depressant works more on the chemical reactions of the brain not my body. So I guess that's the 4th musketeer.....huh.....


Now the main question is, have the pills worked? That's a big yes. I've still got a slight tightness in my chest, but even Tom's observed that I'm happier and busier around the house again...because I can breathe with more ease.
On top of that, I've realised this may also help subdue my anxiety attacks which have risen in frequency again...because I can take deep breathes again. So that's a plus.

I'll admit, I've been fairly blase about my pills in the past, and although I had alarms, had a bad habit of pressing 'snooze'. However, now I've got one which helps me breathe, I've set up 6 alarms my phone:

1) regular daily pills
2) same pills but on the weekend (set at a later time)
3) 1st new pill of the day
4) 2nd new pill
5) 3rd new pill
6) 4th new pill

It's now kind of helping me get in the habit of keeping an eye on my because I've not going to be able to miss the post op ones I'll be given to...y'know...keep me alive...

An interesting side note: discussing the latest symptoms, my specialist mentioned that as these had arisen, we'd now start looking into a transplant for me on a more urgent basis. So....good thing I have one lined up now.

Good times...

8 days til Admission
9 til surgery

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...

Wednesday, 14 January 2015

Just over 3 weeks and counting...

Spoke to my transplant co-ordinator today and confirmed a couple of final details:

Next week sees both myself and my donor in hospital from 1pm to 5pm where we'll;
  1. Meet the doctor
  2. Meet the surgeon
  3. Have a chat with the independent advisor 
During this time, as well as undergoing a bunch of tests and the like, we'll be submitting all the paper work to prove exactly who we are, our connections and explain why the donor is doing what she's doing.

It's going to be a long day.


So...I'm sleeping. A hell of a lot better than last year. My brain still wakes up and does 'the thing', but at least I'm getting rest before hand. And now I'm in major organisational mode.
'A thing' is my official term for when I wake up early in the morning and can't stop thinking about concerns, solutions, general daily activities, musings etc. And nothing will stop it except for getting up and putting the TV on. Informing people I had 'a thing' is easier than explaining exactly what's going on in my head. It also explains why I may be sitting quietly as I try and focus on the screen before me.

Also - since establishing that the fear I think I'm feeling is actually my body's way of incorrectly dealing with the adrenaline rush that courses through me, I've now managed to channel it so I just feel buzzy and excited. Sometimes fear does slip through, but hey....gimme a break here. There's only so much control I can do. 

On top of this, I'm in full prep mode. Know that feeling when you're getting ready for a long holiday, writing lists, setting 'to do' deadlines, making sure everything's in hand? Yet at the same time, you feel a tad mentally lethargic towards other tasks because...what's really the point if it won't get finished by the time you have to leave and it's not really urgent.

That. That is exactly what I'm going through: holiday excitement and daily task lethargy.
So what am I doing to prepare?
  • Yoga and meditation - to strengthen my body and mind.
  • Removing my belly ring - had a sudden panic yesterday when I spotted it and thought of the MRI can't wear any kind of metals whilst your in there.
  • Booking a hair cut - nothing to do with vanity. I just feel really uncomfortable with shaggy hair and my fringe can drive me nuts
  • Tidying - this helps keep my head clear whilst I think about other things so I don't suddenly wake up in a panic at 4am going 'didn't do the thing!' despite not actually having reason to panic about 'the thing'.
  • On the 21st I need to check the Wifi on my tablet works in the hospital so I can arrange any back ups if I can't access Netflix or the internet whilst I'm recovering.
So that's my mental and physical bag slowly getting packed (actually, that's a good point: I'm looking at the big picture, but need to remember the smaller one...I can't forget my eye mask or my teeth brace or I'm screwed...another list to make).

And finally...visitors

Given I'm completely, 100% focused on the operation and pretty much sod all else, visits are to be arranged via Tom. We have NO idea how long I'll be in. Maybe 2 weeks with a gleaming recovery, or 2 months if complications arise.
That being the case, if you are interested in visiting, even if you've already told me, or even him and want details of how to get hold of Tom to arrange something if you don't already have his details, use the comments section at the bottom of this post and that'll come straight through to me and I'll pass it on (it won't be published unless I confirm its publication).

Now, I add this because a few people have expressed an interest in coming to see me when I'm a patient. First off, I know that distance and time for many people can be a killer and completely understand this.
I also know a lot of people have little ones which makes it harder. I'm allowed to see little ones, but only when I'm up and about and on hospital grounds, not in the ward.
And no flowers. Pretty to look at...potentially lethal to someone on immuno-suppressants.

So there we are. Just over 3 weeks and counting...

Every minute of every day, I find myself thinking about the surgery. There's very little else I do think about.


Now for something completely different


Can't remember if I've mentioned it in previous posts, but recently, Tom and I adopted a 3 month old kitten the RSPCA had named Spider. We loved the name and I embraced the irony against my arachnophobia, so we kept it.
I fell in love with her shy, yet clearly affectionate ways and her gorgeously glossy coat. Our time and patience was soon rewarded with a ridiculously playful, if still very shy kitten who loves to snuggle and has recently shown herself to be the actual kitty version of Toothless (from How to Train Your Dragon).

Spider...not the best photo but again...she's a kitten so....moves...constantly. Unless she's asleep.
Yes...we have already contemplated giving her tiny wings to create our own little dragon.
This bundle of cute is a little light in our mornings. When I sleep on the sofa due to feeling too twitchy, I say good morning to the ball of gorgeous fur we call Ode (our oldest cat) then go upstairs to use the bathroom and am immediately greeted by a black shadow with two huge green/yellow eyes and a full 5 second mew. She then jumps up onto the bed, waits for me to pick up a scarf to swirl around her, to which she then meowls again with an, what I'm now convinced is a 'yaaaaaay!! Best thing ever!'
It's a good way to start the day.

Thursday, 8 January 2015

Hello, 2015...5 weeks to go..

[I'd like to start this post with a quick note regarding the previous post. I was incorrect about the Frog Song as it was produced by a close family friend, not my dad. But that being the was often talked about by our family and was still made by a friend so is still personal to me].

It's now 2015 and as of yesterday, I'm 31. Officially in my 30s.
Christmas Eve and Day were spent with Tom's family and was a pleasure as, due to my minor bouts of anxiety and depression despite the medication, they made a particular point of making me feel comfortable by having no issue with my leaving the dining table early after eating or cocooning myself in Tom's room whenever I needed the space. What further helped was talking to the family about the operation. Can't recall if I've mentioned this yet, but my donor is Tom's sister. And she's such a close match, the doctors originally thought us to be sisters.
On top of that, I'm now under the impression that the anti-depressants I'm on actually gave me the courage to play with Tom's oldest niece. I've always been wary about approaching her as she seems extremely unsure of me and I didn't want to freak her out. At Christmas, she showed less signs of caution, so that and the medication gave me the confidence to very carefully approach her and play with her...which resulted in us bonding...and was such a wonderful way to conclude Christmas with the Brands. Especially as she was happy to do the type of playing that involves me being curled up on the couch. I struggle to physically keep up with children as I have pleural effusion: a collection of fluid next to the lung. There are various causes. The effusion may cause you to become breathless.
Which is why, despite the fact that I love children...I never play with them. When they get over excited, I can't keep up. So I don't start in the first place so they don't get disappointed.
But...lying back on the sofa or the floor, I was able to play with her and keep her in high spirits. And she's got such a gorgeous laugh, so it made my Christmas.

Boxing day, we went to my parents to see my brother, his girlfriend and their kids. And again, had a lovely time with family and again, anti-depressants allowed me to relax enough to play and chat with my nieces in a way that I believe I've not been able to before.
That evening, we went to Kew Gardens for the Light Trail. I have a huge weakness for pretty lights as they can have such an affect on the mind. So it ....was....bliss.

Water show with music

Big light plants

Tunnel of light with smatterings of coloured light...I walked through purposely slowly

More plants

FIRE SHOW....with light projection in the background and music
Now it was off to Glastonbury for New Years.
The house we'd rented was basically my ideal house, so I was in my element. And the hot tub was AMAZING! After a day or so of just relaxing, we went to Glastonbury (which I fell in love with), then to Glastonbury Tor....just in time for the perfect sunset.
It was...breathe taking.

Minus the wind desperately trying to blow us away (Glastonbury Tor is really, really high), the colours were so rich, I actually got a touch emotional.
Heading back home, we decided to return the next day for some shop browsing. This was when my New Years was officially...made.

I'm a non-frequent user of Tarot cards. I've never actually bought my own pack, but acquired a collection from people giving me packs they thought suited me most. However, my first pack was given to me by a friend because I just couldn't keep my hands off them so she offered them to me (for which I'm still grateful).
Due to readings I've done for myself in the past, the Judgement card has now become personal to me.
I didn't realise at the time of developing a liking for this card that it can stand for 'rebirth'.

So anyway, we're walking around Glastonbury and I see an illustration in a shop which rings a huge bell in my head. I walk in and see more. Blimey, this shop's awesome! I then see a selection of loose prints and the woman behind the til walks up and informs me that they're on sale and if I'd like, she can sign one for me. What? Why would she the illustrator? The bell is now ringing louder in my head...and I start flicking through the prints. And there it is.....Judgement.

I turn to the woman at the counter and ask ' illustrate cards by any chance?' and she points to a deck on the table. My deck.
In a huge daze, I walk up to the counter with the print and offer it across for her to sign, which she informs me it already has been. 
Since falling ill, I find myself looking for signs and patterns pretty much everywhere. I'm not religious, I don't believe in God, but...when the human brain struggles, it tends to turn to something external to find strength to push it through. And given the odd experiences I've had in life, I've found myself turning more and more towards Paganism. It's based. 

And seeing this card in the shop was like a big neon sign that everything was going to be ok.
I found myself feeling a bit daft at getting emotional over this card, but then the artist said 'ah you've chosen Judgement' to which one of my companions said 'that's your card...' and gave me a slow smile....which made me realise that they all probably understood the impact this card actually had on me. Making me feel a little less silly....a forcing me quickly out of the shop after I'd paid, to hide behind a statue, and have a bit of a teary moment by myself.

My Christmas and New Years was a touch marred when I developed an infection before the holidays, took antibiotics to combat it, but then had it taunt me over the next few days, and as an extra kicker, a pain in my back slowly bloomed, thus interfering just a touch with my yoga (of course!). So with infection coming and going, back pain blooming and Sciatica threatening, as well as the anxiety towards the impending operation on the horizon, there were moments I had to run away, curl up in a ball and just go 'wwhhhyyyy' at everything. Infection appears to have passed, but back pain is still there...aching just slightly. I don't know if the pain is due to the infection, muscular or nerve...I'm going to the GP tomorrow to sort it out once and for all.
However, despite all this, I had truly wonderful company throughout the holiday season. Whenever I left a room, I felt I was able to join people sooner than I would have done, even if it meant sitting with my tablet on as I could feel their company, but was in my own little world. And they were tremendously supportive. No one questioned me or my actions. All of which made me feel safer. I can't thank them enough for that. It actually helped make the festive season perfect for me (the crappier moments are overlaid by the fact that I had so much support).
I have to admit, although we ate very well and the worry of the pain made me drink a ton of water, I'd stay up until about 4am everyday: 1) so my head wouldn't do 'the thing' and wake me up ridiculously early (you can't wake too early if that's when you go to bed) and 2) the feeling of mental fuzz this gave me meant it helped blur the anxiety and depression I encountered...just a touch. It also meant that when I found something funny, I found it hysterically funny. Yes I pushed just meant I enjoyed myself more as I was in a constant state of numbish high.

Came back home....and for the first time in months...possibly a year....I can say I'm actually at peace.
I've slept deeply 3 nights in a row now. I get the feeling pushing myself to breaking point meant my brain sought the sleep it needed and thus reset itself.
My sense of distraction, my focus and my memory are worse than they've ever been. In fact it's now reached the point where I'm struggling to verbalise sentences properly, forgetting simple words or saying one thing and meaning something completely different. My verbal dyslexia is based on the fact that I've so many thoughts going through my head, I can't process them all enough to verbalise one at a time. The memory thing...I recently learnt is the brain's way of entering survival mode: you find yourself in a crisis, so your brain automatically ignores what doesn't benefit you in the here and now or for your future development and remembers everything that will be vital to your survival as a human being. Which is why I tend to struggle to remember even the most basic facts. The other day, I honestly couldn't subtract 1 from 3. That's when I knew I had to stop playing games for a bit.

But otherwise, I'm at peace with  myself...again. After New Years, I thought I was in a constant state of terror regarding the operation, but I'm actually not.
At one point I realised, when I get excited, an adrenaline shot flows through me and instead of feeling happy and excited, my fight or flight instinct is activated and I become terrified instead as I can't take the flight option. That I know this...I'm trying to control it. And find myself looking forward to the operation now. That....and feeling better.

Just 5 weeks and counting...