Friday, August 29, 2008

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...

Tuesday, August 26, 2008

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. 

Tuesday, August 19, 2008

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….

Saturday, August 9, 2008

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...