Philanthropic Pin Cushion Boy dons his kidney shaped cape and flies off to the next level

Hooray - Oli and I have managed to climb to the next stage in this big kidney shaped mountain that we are currently scrambling up!

Oli received a gold star in all his tests, and so we have been asked to come back in and meet another doctor for a further medical review (in a couple of weeks) and have a discussion about the actual transplant... oh and also we get to meet the surgeon..*gulp*

We then have to meet up with an Independent Assessor to prove that I am not some crazed lunatic who has bribed some poor sod - Oli - to give up his kidney...the dodgy photos I can produce of us both from when I was 14 should hopefully show that this isn't the case...

Three mutual friends also have to write statements outlining how long we've known each other - again to prove that there is no funny business going on.

I hardly talk about the operation, to anyone, in fear of jinxing things and it somehow not happening. I keep reminding myself that at any moment this could all disappear in a puff of smoke due to some complication that could arise and if that was the case I wouldn't be any worse of than I am now and Oli will have done everything he can to help me. I guess I am protecting myself from more disappointment but the closer we get to the goal the more I have to remind myself that I might actually have to allow myself to believe that this might happen at some point and think about what to pack in my hospital bound suitcase...

5 a day

Still no news on the Philanthropic Pin Cushion Boy saga. Am hoping for some gaps to be filled in by the end of this week. (The Doctor with the stethoscope full of answers is currently on a well deserved holiday.) 

But in the meantime, with the help of a special someone, I have been taking some rather cheery photos of some very fetching vegetables for an upcoming project.

Click here to see them. 

The Waiting Game

Oli and I are currently still playing The Waiting Game.

Waiting is a bit of a meanie. It purposely slows down time, making what ever you are waiting for come slower. It consumes pretty much everything you do and takes over your head making the wait drag on even longer. And if for a second you happily forget what you are waiting for, The Wait Monster pops right back in to your head as if just to scream ‘Don’t forget about me! I’m still here!’

Throughout regular intervals during the day I find myself glancing at my phone willing it to ring and be either Oli or Alex on the other end with some good news. I can’t say that this new little hobby of mine is proving to be particularly successful…

Anyway I’ve managed to wait for four and a half years so I’m sure a few more days won’t hurt….

Philanthropic Pin Cushion Boy

During my time on dialysis a few friends had kindly said in passing conversation that they’d give me a kidney. My standard reaction had always been to say almost awkwardly ‘thank you, that’s really kind of you’ and then quickly change the subject. I mean how is one supposed to react when a friend casually mentions that they could give you the most amazing gift in the world, taking the indefinite sentence of dialysis away, constant tiredness and the rest of the lovely little side effects kidney failure comes with. Somehow I don’t think if I suddenly produced a large rope net, threw it over them (think Tom and Jerry cartoons) and bundled them in to an awaiting ambulance to get tested straight away it would go down very well…so I usually say, after thanking them, that the best thing for them to do is to see their GP to find out what blood type they are then take it from there.

I find that this answer puts as little pressure as possible on people and also allows them to think seriously about whether they would want to actually go ahead with donating a kidney. It’s not exactly a decision to be taken lightly and the last thing I’d want people to feel is pressure, and I usually assure people that the nature of my condition means I’m not likely to drop down dead in the next few hours so they don’t need to leg it to the GP this minute.

So, when my friend Oliver said he would like to give me a kidney, during a text conversation, I thanked him and told him he was being very kind. The next day I received a message from him asking what the next step would be in seeing if he would be compatible. I recommended he spoke to his GP but little did I know that over the next couple of days he had not only contacted his GP, but he’d spoken to the transplant co-ordinator at his local hospital about being a donor and even been on lots of forums finding out more about what is involved in the whole process.

I was taken aback to say the least and so touched that he had actually gone to the effort of doing this. After a couple of phone calls between me, my transplant co-ordinator Alex, and Oliver, it was arranged that he would send a sample of his blood down from Leeds which would be used for a crossmatch.

Crosmatching is basically a test that involves a sample of my blood and a sample of Oli’s blood going head to head in a little petri dish. My blood cells and his blood cells then check each other out and see if they want to be friends. If one of our bloods kicks off, a positive reaction is found. This means that our bloods didn’t like each other and rejection took place – so therefore no transplant would be able to happen. If a negative reaction happens the bloods sit happily together, and no reaction whatsoever takes place. This is the best scenario for a transplant.

Oli had already found out he was the blood type O Positive, which already had resulted in a little happy dance in my office car park as he told me on the phone - This is my blood type and every other person that had tried to be my donor (my Mum, Dad and older brother among them) had always been blood group A. It was like I was cursed by these damn blood group A people, even my flatmate turned out to A. So when Oli rang me rather excitedly a few days after he sent his blood down and informed me that the crossmatch was completely negative I was speechless, more happy dances were to be had.

Despite being pleased with Oli’s news, I did not want to get my hopes up as there have been a fair few kidney related disappointments over the past year so I tried not to think about what the outcome could be. I was also completely prepared that Oli may change his mind and I assured him that this would be ok if he did. Alex then arranged for Oli to come down to my hospital in London a few days ago for two days of intense testing (cue Oli the pin cushion) and a lot of chatting about what exactly is involved….

Click here to read about Oli’s experiences.

the ex-hypochondriac on route to the OC - Part 3

Instead of telling the airline about my illness and running the risk of them bumping me off onto a fight at a later date because of it, it was decided that I should take a lovely concoction of drugs to ‘almost’ sedate me and fly back on the date that we’d planned.

I wasn’t particularly aware of what kind of medicine they gave me on the morning I was to fly back, nor did I really care at the time. But imagine having a super power where you could close your eyes in one place, and then open them and you were in a totally different place. Bit like apparating in Harry Potter. Well it was pretty much like that, one minute a nice American nurse was asking me so swallow a few pills, and the next I am sitting in A & E in Charing Cross Hospital. I kid you not.

I realise I had not magically transported myself from one place to the other, but for the life of me I couldn't remember a thing, those pills obviously did their job and put me into a mega deep sleep.

A few weeks later, when I was feeling much better, my family decided to fill me in on what really happened.

Being very ill and bedridden for the past few days I was extremely weak so at the airport my parents borrowed a wheel chair and wheeled me around in it. I somehow don’t think walking would have been advised anyway, not with the amount of sedation medicine I had just been given. Introductions might have gone something like 'face meet floor, floor meet face.'

After being wheeled through security, having been as quiet as a mouse for the last 5 hours as I was dosed up to the eyeballs, I jumped out of the chair, tipped my purse upside down sending coins and notes flying and screamed "I don't want this Monopoly money, TAKE IT AWAY!"

My parents were shocked to say the least and god knows what everyone in the airport thought of me. The money was hurriedly scooped back into my purse by my flustered parents while I had returned to my chair. A quick tour round the shops was to be our next activity as it was hoped that might take my mind off the dreaded Monopoly money.

Unfortunately for everyone in the airport it wasn't long before I had another slightly mental alteration, even more bizarre than the first...

Three Thousand Words

Here are a few photos that my boyfriend and I took last night at dialysis.

Below is the main strech of the unit. That's my machine on the right. This photo was taken quite late at night so there are very few people left in the unit.


The next photo shows the dialyser on the right of the photo. This effectively is my subsitute kidney, and is the main component of the machine.


The last photo is another part of my dialysis machine. The tube on the left of the picture is actually an air trap and prevents bubbles from going in to my line and into my body. Clever little thing really. If air does get past these traps an internal machine air sensor shuts down the blood pump and an alarm will sound.

Oh and that's me in the backgrond pretenting to be engrossed in something in the distance.


Hope these photos gives a little insight in to my thrice weekly trips down to the hospital!

almost but not quite

Two Fridays ago at 7.38am my phone rang. Sleepily I answered it wondering who it could be at this hour. When a cheery voice announced that it was a representative from UK Transplant I didn’t even click, thinking it was probably about something to do with a press article they wanted me to do, which has been the sole reason that they have called me in the past. So when the voice happily said that a matching kidney had been found I literally was speechless and couldn’t even string a sentence together to the poor guy on the other end of the phone. I literally can’t explain the feelings and emotion that flooded through my body at this moment in time, I have never felt anything like it. Completely elated at the news, but unable to let it properly sink in I calmly walked through my flat to the bathroom where my house mate was getting ready to go to work.

In my best ‘trying to stay calm voice’ I told my housemate the news. She promptly burst in to floods of tears and hugged me, but then quickly switched in to major organisational mode and called a taxi to the hospital whilst I stood in the sitting room unable to move with a million thoughts going through my head…not only about the operation ahead but also about the amazing person that made the decision to donate their organs when they had died, and the incredible family that honoured his decision even though they would be hurting so much at this point.

A few phone calls later and my mum was also on the way to the hospital where I was met by a Doctor who took my bloods and explained that they had to measure my anti bodies to check that my body wouldn’t reject the kidney. The test results take four hours to come through...meanwhile I was to have an ECG, and echo test (both examine the heart), a chest x-ray and also an emergency session of dialysis. I was told that in order to go ahead with the transplant I would have to clear each one of these tests. Being in complete shock I didn’t want to let my myself believe that I would have the transplant until it was a 100% certain as I knew how much of a let down it would be if it didn’t go ahead.

I had thought about this day almost every day since I was diagnosed with kidney failure four and a half years ago, and I always thought I would be quite excited and calm about the whole thing. But I wasn’t at all, in fact I was the complete opposite and cried with happiness and nerves for most of the morning. I was in an absolute state of shock, having had resigned to the fact that I could be waiting many more years for my kidney.

It wasn’t until the Doctor returned telling me that the blood tests were all good and the operation was to go ahead, that I let myself believe that I was to have my transplant and family and friends started rallying around.

It was at this point that everything slowed down a bit, I stopped being rushed round the hospital from test to test and instead was left to wait in a tiny corridor at the end of a ward. When a nurse came to get me, requesting I brought my ‘next of kin’ with me and asked me to wait in a little room I knew that something wasn’t right. The five minute wait until the Doctor came in felt like time had slowed down – it was agony. When he eventually came in I knew straight away from the look on his face that the transplant wasn’t going to go ahead. I couldn’t tell you exactly what he said as from the second he said ‘I’m so sorry…’ I didn’t hear anything else and collapsed in floods of tears, in complete despair that I had come so close and for the first time in 4 and a half years I had let myself think about life without dialysis and how amazing it would be.

Apparently when the surgical team had had a proper look at the kidney they decided that it wasn’t good enough to given to me, as there was a chance it could fail as the artieries weren’t as strong as they should be.

I was absolutely overwhelmed at how supportive those close to me were, and how understanding everyone was at the sadness and disappointment I felt. But as I went home that night I had to remind myself that although I was mourning for a kidney I never had, there was a family out there mourning for a young person who they had lost, and obviously that doesn’t even compare to what I went through.