Friday, 28 February 2014

New phase in mental state

[BLOG UPDATE - I have applied some new changes to this blog. I have no idea what they do as they merely caught my interest regarding what I'm endeavouring to do with this blog, so I thought, 'hey! Why not!'. Let's see what happens...]

Before and since deciding to go for a transplant, the changes in my emotions and mental state have matched the pace of the process. Not a huge surprise, but it still takes a moment to realise which mental stage you've moved onto next. Sometimes you get hit by a completely random state of mind and end up thinking 'what the hell is wrong with me?!' before reminding yourself of the stress your mind is currently under.

On the run up to deciding if I should have the transplant, as I refused to feel negative towards my actual health, I began suffering anxiety attacks to anything else that seemed to spiral out of my control.
As things in my medical world seemed to stabilise and I gained control, the attacks lessened.

Now that I'm looking for a live donor, a new mental reaction appears to have replaced the attacks. This one is easier to control, but is still annoying: short bursts of epic, epic guilt.
Apparently, it's perfectly normal for recipients to feel guilt at being offered a donor kidney. You're asking someone to take a huge step in their own life to help you rebuild your own.
Although I know it's there, I tend to try and quench any feelings of guilt whenever I receive an offer.

These feelings of guilt have now transferred themselves onto somewhat random moments in my life. I'll be talking to someone or doing something, then walk away and be hit by a couple of seconds of crippling guilt.
They last literally seconds as once they rise, my common sense pops up and asks 'why exactly are you feeling guilty?' then I'm back.
It's as if my brain has taken to not quite worrying about that fire threatening to burn my house down because there's little I can do about it except for panic. And that's not productive. Therefore I'm going to completely freak out about the fact that that fence over there is slowly falling over and OMG that's worse than everything else!!
These moments are brief, just quite uncomfortable.

Physically, these moments feel like a vice-like headache. Only instead of pain, there's an intense sensation of negativity and self-doubt. And when I'm tired, they're worse and last longer. They're actually a lot easier to handle than anxiety attacks as anxiety can actually make you feel like your world is spinning out of control and the attacks have a more physical effect on you (hyperventilation, uncontrollable crying etc etc).
Honestly I prefer the guilt to the anxiety as, in my experience, socially anxiety can be a pain as someone asks you something whilst you're having one and everything you answer will be wrong and will piss off that person. Whereas whilst you're feeling the guilt, someone approaching you can help distract you.

As the guilt is infrequent and only lasts a few seconds, it doesn't prevent me living my life or taking on new challenges. If it did, like it can do to some people, I'd start actively seeking help.
As, to me, it's under control, I don't feel that's necessary

However, for those who do need help, sometimes it's difficult getting the right kind.
Therefore, the first step I'd recommend is this site (I think recommended to me by a friend):

Give it a try, then consider finding someone to speak to. If a mental health is holding you back from living your life, keeping you indoors and in fear, it's needs to be treated and dealt with.

[RANDOM SIDE NOTE: As I'm now volunteering for Kidney Research UK, I've started a journal containing work information. A journal I obtained from the self-help company I worked for years and years ago. I've just turned the first page and saw this motivational comment from Dr. Wayne W. Dyer printed at the bottom:]

Releasing guilt is like removing a huge weight from your shoulders. Guilt is released through empowering thought of love and respect for yourself

Back to work

I received my Kidney Research UK Community Champion volunteer pack today...Yay!
Lookie! I even got an ID card:

Ooooh yeeaahh loving the cheesy grin!

It's ridiculous how excited I am to get started. I get a t-shirt and a detailed pack plus templates to use and everything!

Now...must not shatter myself trying to do too much at once.

Monday, 24 February 2014

Back in the real world!

I always start these thinking they're going to be tiny entries.
I then have to whittle them down so they're not just me rambling for 3 pages!

First off, I'd like to say a huge thank you to those who've stepped forward for the test. I know it's a really difficult decision to make and I always go all warm and fuzzy whenever someone takes the step.
I also completely understand that there are those out there who'd like to step forward, but can't because of their own health issues. My father's one of them, and I love the fact that the thought is there anyway! I think I've said it before but mental support is just as strong as the offer itself. Trust me. I've got through some of the hardest moments knowing I'm backed by some amazing people.

My specialist confirmed that my feeling crap was down to having been mentally and physically stressed for the last 6 months. When Tom finally got a job, the relief and letting go was so intense, it hit my body like a shock, especially as it's not up to it's fully working capacity so couldn't handle this the way stronger people do.

And after I was hit by the shock of relief, this had a massive impact on my ability to think straight, but I pushed on, regardless.
Last Thursday, however, I finally conceded defeat, stopped everything, lay on the sofa and just slept. The longest nap I've had in a while.
In fact, I've been trying to recreate it since and haven't been able to. Think I finally kicked the exhaustion bug. It also helped that I had a kick ass weekend, saw great friends and ate terrific food so now feel amazing.
Yes, rest was the obvious solution, but sometimes, when you've got so many tasks lined up, it's difficult to do so as they're always in the back of your mind. During Tom's unemployment, I kept myself busy to stop myself facing our circumstances and do something of my own to help. When he got the job, the mental thrusters were on and I couldn't just stop immediately. I think I had to reach the tipping point before I could turn back.

However, although I'm now relaxing and over the worst of the exhaustion, I still want to keep myself busy without pushing myself (I can never just stop. I like to keep occupied).
So, I've taken on the best volunteer role to sate this urge: Community Champion volunteer for Kidney Research UK

Now, before your reading voices go 'seriously? You just said you were taking on too much!' that's what's so great about this role.
They hired me, fully aware of my health issues and immediately informed me I can undertake any task which suits me at the time (flyering, arranging collection boxes in shops, presenting in schools etc) and do so by my own schedule. If I need to, I can stop for weeks, even a month at a time, before I'm ready to come back and continue. I am my own boss.
They give me all the support I need, so technically they're helping me help them. In fact, most of their Champions are people who've encountered kidney failure directly or through family or friends.

And the fact that I have this role and can be of such help to a charity without threatening my own energy levels is thrilling! I can't wait to start planning once I receive the pack!

On top of that, I'm now involved in the next upcoming Purple Theatre Company show as Sorel in Hayfever.
This involves a chilled out rehearsal every Sunday where I get to see mates and the rest of the time, just learning my lines. Not the first time I've done that so no stress. And it's fun!
Will be posting more information on the show at a later date. Watch this space.

I'm learning to stay busy without killing myself whilst doing so! Lesson learnt.

Oh...and I'll just leave this right here:



Tuesday, 18 February 2014

A quick update and Science!

Still tired. I keep thinking that it's only been like this for a few weeks. Then I remember, I started January in a state of 'everything physical is going wrong!'

I've got 2 more compatibility tests on Friday. Nervous, excited, concerned, raising hopes....choose your emotion.
Don't know if I've said this before but I've decided not to get my hopes up until I'm on the operating table and I see that mask coming towards me (then the surgeon sees the raise in my heart rate and checks I'm ok!)

I'm also seeing the specialist on Friday, so hoping to get some answers then.

I wanted to write more in this blog, but most the stuff I listed was pointless drivel. Not even the interesting fact I think this is the 10th re-write, but I think the best way to express my brain at the moment is the following picture.

All your thoughts are belong to me
(All hail the Wikipedia reference -


Oh yeah, and this just came up in my twitter (@FrankieLGrillo) feed:
*whisper* I have kidney scarring

I feel the need to write here, if you read my blog and have any questions you'd like to ask me about kidney failure, the process I'm undergoing etc etc, do ask me, either via Facebook or through this blog.
I'm happy to answer any question....within reason!

Friday, 14 February 2014

The world through a fish bowl

(The funny thing about feeling the way I do as described in today's entry is I'm not entirely sure if I've posted something similar in the past. Even using the same expressions I may have used before. If I have, then see this as a....measure of frequency to how often I

These past two weeks have mainly been sponsored by the following feeling;


No, I haven't found a new spiritual level. Just that my habit of walking into a room, pausing, then muttering the words 'what am I doing here?' has dramatically increased.
Now I know I've probably got a reputation for being a bit distracted, for being a bit dizzy, but this is starting to take the biscuit.
Pretty much every time I get up and move into another room, within seconds I forget why.
Every. Time. And this has been happening for almost 2 weeks now.

And although the nausea and unpleasant, early on fullness I've been getting every time I eat a meal has abated somewhat, I'm still waking up every other day feeling ravenously hungry, rather than getting the slow build up from peckish to 'Eat all the food!!!' I go straight to feeling like I haven't eaten in a week.

Fortunately, freelance/TFP (Time For Print) work is on the rise, keeping me distracted and fingers crossed my new indent ad should be out soon, so it's almost like I'm sacrificing physical comfort for a decent boost in work occupation.
......Not sure which I'd prefer to be honest. Perhaps the latter as I can just about ignore ill health whereas getting work can be more of a struggle.
I'm still getting out and about as I'm not sofa ridden, but I usually get smacked down by the evening, which has prevented me from attending the odd social gathering and taking on night shoot jobs as an extra.
Work wise I can't face standing around for several hours, potentially in the freezing cold feeling like this. Even if I'm inside, it's still a bit much.
And it's not just a matter of rest. Work can be quiet at times, so I spend time chilling out at home. That's made no difference to the low energy I feel.
Guess I'll just ride the wave.

In other, slightly random news, today I learnt that after the transplant, keeping pets is no problem. As long as I don't 1) clean the fish 2) avoid the litter tray as if I have an unseen cut on my hand, it can let bacteria in and basically mess me up.
Fair enough. Today, however, is the first day I've cleaned the tank in a while (Tom's been good enough to do it as I haven't had the physical strength needed to move the tank), and today I gave it a go with good success.
Then found a cut on my hand. Which has never happened to me in all the years we've had a tank.

Really?? Just after I read that information?

Monday, 10 February 2014

Transplant seminar and a message


Saturday 8 February saw myself and a mini entourage travel to Hammersmith Hospital to attend a Transplant seminar, hosted by the live donor team with speakers made up of a selection of surgeons, donors and recipients.

They covered....everything. It was extremely interesting, but such an intensely emotional afternoon that I found I had to refuse to ward tour at the end, thinking it would be a little too much for me to take. I've been to hospital before, and I wasn't at that point ready to see it again.

The seminar began with a positive word for live transplants. Especially pre-emptive (before dialysis) transplants. These are usually done when the patient is around 20% functionality (I'm at 28%) and, at £20,000, is far cheaper than a years worth of dialysis. Not to mention, a transplant extends the patient's life and gives them more energy.
With this reasoning, medics encourage patients on dialysis to get a transplant, though I doubt it takes much convincing as dialysis can be an intense process for anyone to go through.

It's amazing to think that 20 or so years ago, transplants were extremely rare, yet with the advancements the medical industry has made over time, they've increased by 50% with ongoing success rates.


Did you know
The number of recipients on a renal waiting list is around 7000 and very rarely drops below this number.

Whilst on the waiting list, there are 3 different types of donations available:

1) Cadaver donor - Kidney from someone who's recently died. 
Surprisingly, this option isn't as widely used as it used to be. Previously, the main donors were people who died in traffic accidents or from illness which didn't effect the kidney.
Now, thanks to development in medicine and road safety adverts which have been in full force over the last few years, encouraging road safety and helmet use, the availability of healthy cadaver organ donors (especially from young people) is dramatically reduced.
Now the main organs available are those from the older generation meaning most of the time they're too old to use.

However, on the occasion that a cadaver donor is made available, the lucky recipient who receives the organ is selected as follows:-
As with living donors, there are 6 medical numbers which need to match up with the recipient's to ensure compatibility.
Due to the length of the list, if (inevitably) more than 1 person matches those numbers, the consultant considers;

  • How urgently they need the kidney
  • Their location
  • Their age 
  • The length of time on the list
  • and so on.
For each of these considerations, a patient gets a point, bringing them closer to being the likely candidate.

Location has to be considered as the operation has to take place within 48 hours or the organ doesn't work to it's optimum capacity. This check list therefore allows the consultant to narrow down to the person who 1) needs it most 2) is able to get to the location soonest. 
Even then, however, there's a chance the kidney might not be fully compatible.

This is another reason a living donor is highly encouraged as the final date is set by both people, to their own convenience, and in the meantime, the kidney kept safe and happy in its home environment.

2) Living donors - from strangers or relatives.
Basically doing what I'm doing and finding living people who could give me a kidney.

3) Paired donorship - this...this is a new one for me: matching up with another pair
If Tom and I did this (myself as the recipient needing the kidney, Tom as a healthy donor but unable to give to me), we'd enter a pairing pool and be given another couple to whom Tom would donate and I would receive.
Tom's suggested we consider this as a possibility, so we need to sit down and chat about this.

The sad thing is, there are also perfectly healthy people out there who've been born with 3 fully functional kidneys and don't even know it.

Another thing I didn't know, each person on the list has two potential statuses:

ACTIVE - if a kidney is found at 3am, you're called in to rush to hospital. You have to be as ready as a mother about to go into labour, except this is more unpredictable
SUSPENDED - if you're on holiday, ill etc, you're not contacted until you've informed the group otherwise. If you're ill you can't under go the op.

They also couldn't emphasise enough that the main reason for people missing out on a new organ is due to not being contactable; 'give us contact numbers for your home, your mobile, your work, your family, your friends who might know where you are....everyone. Otherwise you're missing out on the new organ if we can't reach you.'

A lot of information to take in, so we closed in on having a break.
Before we did, however, we were informed that, if the organ looks like it's being rejected, the recipient is given a steroid treatment. This, however, leads to a 10-15% chance of getting diabetes.

*wow...a lot of information...ok*
'Time for a break now. Outside you'll find more tea, coffee'
This was met by a light ripple of 'really?....after that talk' style laughter.


The first successful live donor transplant took place on 23 December 1954 when the patient was offered his twin's kidney. The hospital was in commotion over the idea as, if the operation went wrong, the surgeon would go to jail. On hearing his wish to undergo the procedure, nurses who'd normally assist the surgery quickly made their way back home for Christmas, except for one nurse who was unable to travel due to snow.
She was neatly informed, if she didn't help, she'd be fired. Good times.

This nurse stayed with the patient throughout the process, looking after him and keeping him company.
The operation was a success, and it seems the two bonded so much during their time together, they got married and went on to have a family of their own. Talk about a happy (and brow wiping) ending!
This was a revolutionary time for medicine as it prompted further research into this particular area.

From 2000 to 2007, the rate of living donors went up by 35%.....Hammersmith hospital now has 2 to 3 operations happening a week.



The procedure of the operation was then explained with GRAPHIC detail. Pictures and everything. They even had an small emergency area set up in place in case anyone felt ill.
Fortunately, over 3 years at the British Medical Journal prepared me for these fascinating pictures.

At the beginning of the talk, I briefly zoned out

Remember, kidney patients suffer distraction. The specialists themselves even mentioned that they'd be repeating themselves due to this fact. I think....I can't actually be sure as I may have zoned out. Tom confirms this statement was, in fact, said.

then back in again to hear 'the operation leaves a huge scar and the donor in a lot of pain'.
Oh dear god, don't say that!!
He then followed this up with, 'but that's in the past and now things are drastically different'
Ah...must have missed the first bit of that sentence. Carry on.

Previously, to remove the kidney from the donor, a huge incision would be made, hands shoved in, the kidney was removed and the donor left with a large scar and some pain as a reminder of their sacrifice.
Now, thanks to a revolutionary item called ETS vascular stapler, the surgeon makes a 5 cm long incision in the donor. This is held open with clamps, the required veins and artery tied off with ribbons of matching colour to assist in the operation, and the kidney is removed. It's immediately flushed with preservative to remove all the fluids left over by the previous user, turning it a from a neat pink to a discoloured grey, then the wound itself is stitched up from the inside. This method leaves a scar so small, after a few months, it looks like a mere wrinkle on the person's side.

The ETS vascular stapler itself is revolutionary as, instead of getting up close and personal with his hands in the patient, it allows the surgeon to stand a short distance from the area and do everything with minimalist methods.

I think this is the right product

The kidney is then taken to the recipient, an incision is made at the lateral part of the abdominal muscle (just outside the lining of the muscle you use when doing sit ups), the surgeon makes a 'pocket' to put the kidney into, plugs it in, and (in theory) the kidney should start working immediately.
It's said, in most cases, the recipient should start feeling the effects of the new kidney working straight away as their dodgy blood gets filtered.

Although the patients will have been in the hospital since about 7am, getting tested once again just to make sure they're well enough on the day, then prepped for surgery, the actual operation takes about 1 - 2 hours.

Both patients are then taken to a special care unit specifically designed for renal patients and placed side by side. This is to enable the team to monitor both patients carefully and allow the family to see both at the same time without extra fuss. It also allows both patients to see each other and know how the other is progressing which helps in the recovery process as they're not lying in separate wards, wondering how the other is.
On waking, both may feel drowsy and in some discomfort (the donor is described as feeling like 'they've gone 10 rounds with Mike Tyson and guess who won'). But that's where the morphine (controlled by the patient) comes in. Saves the patient distress of waiting for the nurse.

The recipient continues to undergo tests to ensure the kidney is working well in the new body and the donor recovers quickly enough to the point of going home the next day. Then 1 week of rest, potentially back to work after 2 weeks. Definitely no heavy lifting for 6 weeks to give the body a chance to fully recover, even though you feel fine.
There are check ups with the doctor, but these are to ensure the body is recovering smoothly from having just 1 kidney. Because of what the donor has just done, the doctors are available at all times for them, to ensure full and ongoing recovery.

As months pass and the body adjusts to this new situation, that one kidney gets progressively stronger and the doctors are there to ensure it's not pushing itself and working over time.
However, given the full body service the donor receives, donors are actually some of the healthiest people around as they're cared for and treated to ensure they can give a kidney, then monitored past the procedure.
In fact one of the live donor team specialists actually told us 'you might be tempted to give a kidney just to get the health benefits...but we recommend you do it to help the patient, not for your own personal benefits.'
Which is the reason why, despite all the physical tests, the donor still has to prove relation/marriage/friendship to prove the transplant isn't being done under pressurised conditions.

One surgeon gave a statement which actually moved me a little:
'A transplant is not a is a marathon. A marathon which we will run together'.
This was another reason I was happy to go ahead with a transplant. You really feel like you've got epic backing from the doctors and nurses around you.


This is a subject I have to admit I was a little lost on and the speaking specialist finished with 'you've just done a class in O Level biology'. What I've written below is based on the notes I was able to make.

A mismatch between a donor and recipient can be made to work, but the immune system has the potential of causing issues for a successful transplant due to the HLA antibody.

1) Blood group - this is something you are born with and cannot be changed
2) HLA Antibody - this is acquired. On exposure to foreign (a body that's not your own) proteins, your body makes HLA antibodies. The level of antibody can be measured and in some cases removed to enable a successful transplant. It's the chemical reaction pregnant women produce on conception.

DID YOU KNOW: Japan believes that when a body dies, the organs become diseased and should not be transferred to another living person. Therefore, they do not have cadaver transplants. 

This antibody factor can be a barrier to a potentially successful transplant. However, it can be worked around and 15% of operations since 2005 have been antibody based.

Here someone asked something I'd thought of a while ago, then completely forgotten: after my transplant, if I die of something completely unrelated, can my new kidney be reused?
Answer: Biologically yes it can, but the law won't allow it.
Short answer: No.

Am I the only one this doesn't really make sense to?


Of course there are slight risks to donors. There's risks in everything medically based including taking paracetamol.
They might encounter high blood pressure and 15% of donors encounter Proteinuria (a minimal amount of protein in the urine), but there is medicine available to treat the issue and that's why the donor needs to be monitored after the transplant.
However, the risks donors face are usually down to genetics anyway, so there's always a chance they'd have hit in the future, regardless of transplant.


So...after the talks, which lasted from 1- 3pm, by which time I was exhausted, we then split off into groups with allocated donors/recipients.
My mum then asked a question which I'd thought of as a fall back option a while back but had completely slipped my mind: 'if the donated kidney fails later in the future, can my current kidneys act as a back up?


Apparently, after the transplant, my own kidneys slowly completely lose their own functionality and basically wither away.
This shocked me a little as I honestly thought they'd be there as a back-up. But no.

After this hour passed, we were then offered the opportunity to visit the wards, see where we'd be going for the transplant, pre and post, but I couldn't handle it. I've seen an ICU. I've been to plenty of hospitals and by now I was feeling so intense, I just needed to go home and stop.

Don't get me wrong, it was immensely interesting, but it's also a lot to face in one afternoon.


Definitely a need to raise awareness for kidney failure. On a bigger scale. I know I'm already writing this blog to raise further understanding of what's involved, but I desperately want to do more. There were questions asked by the public, which I honestly have to admit surprised me, and I had a need to spread this information to those who wouldn't even think twice about renal failure.

Therefore, I've applied to become a Community Champion for Kidney Research UK. I've got free time, I've got the knowledge of the subject. Why not?

Medicine has come so far to make kidney transplants a walk in the park. The only difficulty faced is knowledge on the subject and encouraging people to donate.

And on that note:


Tell your family if you have a donor card. 

Despite having a card on them, a doctor still has to ask a deceased's family if they're ok with organ donation. It's the law. In shock of hearing it for the first time, families tend to instinctively say no. 
So make sure family know what your wishes are.

Sunday, 9 February 2014

Ah...I've been expecting you

Seems the feeling weird was a combination of Dyspepsia (an ongoing form of indigestion which involves stomach acids playing up - getting burpy and bloaty. Usually treated by Rennie...which I can't take. hurrah) and a head cold. My sinuses are awake and sneezy. However, before a cold can reveal itself, it has to give me some weird, existentially based thoughts and worries. Unimpressed.
I'm also wondering if I was a little nervous about the seminar as any emotional feelings also seem to have subsided.

In a way, I'm relieved as I hate feeling so disorientated. However, it did mean that, during yesterday's seminar, I was aware for the first 3 hours, then felt myself zone out every so often for the final hour.
It was really interesting, but I found I was exhausted by the end despite the main activity being popping to the loo or getting tea.

Ok....I was planning on writing up the experience in the next blog after the previous one, but I've just had to correct a number of pointless and silly grammatical and spelling issues, so perhaps now is not the best time.
May leave the update for another time.


*initiating mode 'combat cold before it sofa's me'*

Friday, 7 February 2014

A little of this, a little of that.

[This may be another entry that doesn't quite make sense. I've once again found myself in a bit of a weird head-space which I hope is explained below. Thought it might make an interested entry)

Tomorrow, we're attending a seminar which involves meeting other kidney patients, donors, learning about the ins and outs of the experience as a whole and getting all your questions answered in one big chunk.
Looking forward to it!

At the moment, however, I'd love to know why I've been feeling so drawn this week. Tuesday, I finished my usual exercise (10 mins on easy) and found I was more out of breathe than usual.
This is not normal. Usually after exercising, I feel energised, have breakfast porridge, then get ready for the day. In fact, one of my previous entries on here was written during an exercise week and I felt good!
Not this time. Since Tuesday, I've been feeling achy and my appetite's been playing silly buggers with me: I get really hungry to the point where my stomach's really uncomfortable then I can't finish the meal.
I've taken to pecking here and there as soon as I get hungry to make sure I eat enough throughout the day.
Not to mention distracted.
I work with Tom on his stories by reading them out loud as this helps us look at the structure and how smooth it is as a narrative. Yesterday, I had apparently begun making up what I was reading without realising. Not in a correcting nature...just...randomly.

The worst part is, I'm edgier. Because I'm in a state of discomfort, I'm mis-interpreting voice tones, comments and start thinking a situation is more intense than it needs to be. I also find, although I'm in a generally good mood due to the good fortune we've encountered this year, I've developed weird intolerances towards people and situations. Most the time I'm able to look past it thinking 'that's not me', but other times, I'll say something and Tom'll give me a negative reaction ('why the hell'd you say that?') then I'd realise that the statement was completely against my nature.
I'm currently just grateful that sleep's not a problem, it's just the other stuff which causes me hassle.

It could be one of a few things:
  1. I'm coming down with a cold. In which case, get on with it and just hit me. I hate the battle before the final defeat.
  2. It's a stomach bug, but I'm just strong enough to fight's just hitting me in other ways.
  3. Tom getting a job and my finally making some headway as a freelancer is such a weight off my mind after a year and a half or so, my body is in shock from no longer feeling that year long tension.
  4. There's some kidney sh*t going down which I'm unaware of....something which should hopefully be answered at my next appointment. 
However, I'm dealing with this. It's uncomfortable and a bit annoying to try and work past, but Tom's been a saint in helping me. I'm distracting myself with work and being social when I don't feel TOO horrible and as long as I'm open minded to the tones I hear others use and take it easy, I'm ok.

Here's the to the light at the end of this brief (come on, be brief) saga.