Thursday, 29 January 2009

I'm in The Sun today

There is an article on me today in The Sun, pg 44 (if you happen to have a copy) or if you don't you can read it by clicking here.

Then - Dialysis keeping me alive!

Now - New kidney ... new life

The interview only took place yesterday morning (over the phone) and then the freelance photographer came at 1.30! So not much notice!

A quote from the article, I think it says it all...

Holly is acutely aware of the gift the family of her donor has given her.

She says: “I will write to tell them what a difference the operation has made and my plans for the future.

“They have given me the gift of a longer, healthier life - what else could I ask for.”

Click Here to Sign up today ... you may save a life

Thursday, 22 January 2009

16 Million People on the Organ Donor Register!

As I said in my previous blog Organ Donation was definitely a hot topic in the news today!

Click Here to see the BBC News article.

16 Million people have now signed up to donate their organs after their death, this has doubled since the 8 million that were on the register in 2001! In 2001, former Health Secretary Alan Milburn urged people to sign up to double the number from eight million then to 16 million in 2010, so that target has been achieved and a year early!

More than 1.6 million people in Scotland have agreed to donate their organs after death, more than any other part of the UK. (Click Here) The article features a young boy called Aaron who received a new liver and small bowel in 2000. His mum does continuous work to raise awareness of the importance of Organ Donation and set up the website to support children and families affected by transplantation and Organ Donation.

Health minister, Ann Keen, said: "It is fantastic news that 16 million people have put their names on the Organ Donor Register. But there is still much to do. We remain firmly committed to helping many more people benefit from a transplant and want to see organ donation rates rise significantly over the next four years from the current 800 donors to 1,400 per year by March 2013."

To read more about it Click Here.

Obviously all this is great news, but there is still a short fall in the amount of transplants taking place. There are over 8000 people on the transplant waiting list but over 1000 of these people will die this year waiting (thats 3 a day) as only 3000 transplants take place each year.

Hopefully this campaign get make a difference, and get people talking about organ donation or even better signing up to the organ donor register! (Click on the card below to sign up)

In other news... I wasn't able to go to London, as I have been Ill all week, I'm so disappointed as I was really looking forward to meeting my mentor Oli and taking the campaign a step further. Another date for my trip down will be arranged when I'm up to it!

Wednesday, 21 January 2009

Look out for Organ Donation in the news tomorrow... I was asked to do some media stuff for it but had to decline due to not being well and lots of university work!

Off to London tomorrow, can't wait to update you on the latest goings on with the campaign!

Cheerio for now x

Tuesday, 20 January 2009


Sorry I've not been good at updating, it's been a busy week! Have got lots of Uni work to do, an assignment comparing Pedagogy in England and Pedagogy in New Zealand, exciting stuff!

I have also been busy organising a trip to London to meet with the Battlefront team and my mentor Oli for the Gift of Life campaign! However I have not been feeling well since Sunday so I am hoping I will still be able to go on Thursday! Went to clinic on Monday and they were happy enough that it was just a bug I have picked up rather than anything too nasty, in fact my creatinine is the best it has ever been at 128!!!! That is great considering the surgeon that performed my transplant said it was unlikely to go below 180!

I have seen a lot of my sister in law and my little neice which has been lovely, she is growing up so quick and is able to sit up on her own now!

Anyway that's it for now, will update more soon, and of course bring you the next installment of my transplant journey!

Friday, 16 January 2009

Great news...

Little Bethany received another call for her new liver this morning, and all has gone ahead! No other news on her yet, really made up for her and her family. Thinking of them all lots, as well as the amazing donor and their family too who have given Bethany and her family this special gift.

Lets hope she makes a speedy recovery and is up and running about with her little sister soon!


Thursday, 8 January 2009

If you need a reason to sign up to the Organ Donor Register, take a look at this little girl who is on the transplant waiting list for a new Liver. In December she received two phonecalls, but these were unsuitable, lets hope its 3rd time lucky for Bethany.

Bethany's Article.

Her Mum Sam is very positive and says 'A transplant would make such a difference to Bethany's life. I really hope more people sign up to the register, not just for Bethany's sake but also for everyone else who needs a transplant.'

This article is part of a campaign launched by Tesco to encourage more people to sign up and become Organ Donors.

"Right now more than 8,000 people in the UK are waiting for a donation of a kidney, heart, lungs, liver, pancreas or small bowel. Transplants are a miraculous medical achievement yet they depend on the generosity of donors and their families willing to make this life-saving gift."

There are other peoples experiences of Organ Donation here.

I have actually had the privilege of meeting Paul Savage and Ray Pearson who feature in the 3rd article, what an incredible story they have to tell.

Finally Victoria Tremlett who also features in the campaign has actually filmed a video for my "Gift of Life" campaign to discuss the importance of organ donation and her wait for a lung transplant. I will let you know when this available for you to watch, but if you can't wait till then you can read her blog here! She is a brave lady and a true inspiration...

If this has made you consider signing up, please do so by clicking here!

Thanks x

Monday, 5 January 2009

The Day I received "The Call"...

So I have been promising for a while to write about "The Call" , Ironically it is exactly 4 years ago to the day that I started dialysis. Who would have thought 4 years down the line I would be writing about receiving a transplant. So here goes....

24th October 2008. - 3.15pm

It was a normal day, me and Dad were out and about running a few errands, one being getting new windscreen wipers for my car! We had been into Halfords and the nice young chap was starting to fit the wipers when my phone rang. The caller display said "unknown" and I just presumed it was maybe my brother ringing from work. The I heard this voice saying "hi its Helen from the Royal we think we've found a suitable kidney for you!" After that her words just merged together and I had to pass the phone to my dad as I couldn't hold back the tears! I felt sorry for the poor lad fitting my wipers - Dad was talking seriously on the phone, taking all the information in and following the instructions, whilst I was having hysterics.

The poor lad from Halfords wondered what was happening so we felt obliged to tell him, he wished me good luck and we were on our way home, with a thousand thoughts running through our heads. It was lucky that my dad was with me and was able to drive me home as I was in no fit state.

At first I was told to go to my usual dialysis unit at Warrington but then a second phone call came telling me to go to the Royal straight away. The transplant co-ordinator was lovely to me and asked if I was ok, as she realised I was upset when I was speaking to her the first time.

So whilst my Dad drove me home, I rang my Mum who was doing what she does best - shopping. I asked her to come home as quickly as she could. Because I was crying on the phone she thought I'd had an accident in the car. But not wanting to miss a bargain or even her place in the queue, she still managed to buy 2 t-shirts in the 70% off sale! I phoned Andy (my brother) in work but he hung up on me because he was busy but he managed a quick text to ask what was up as I don't usually ring him in work. On hearing the news that I had received the phone call he immediately phoned back.

I was determined not to look scruffy when I got to the hospital so on arriving home I quickly jumped in the shower and washed, dried and even managed to straighten my hair but passed on putting the makeup on! Mum arrived home from shopping with bags in tow, Dad was in the loft getting my suitcase down (pink of course). Despite waiting over 3 years for the call nothing was prepared, my mind just went blank about what I needed to take, so I phoned good old Emily T who told me a few essentials that she found useful during her transplant journey, she was very reassuring and managed to calm me down!

At this point Mum (despite having purchased her bargains) was as white as a sheet but insisted she was fine. All things considered though we were all quite calm.


We set off for Liverpool at 4.30 sending a few texts on the way. Despite it being the Friday rush hour we arrived at the Hospital about 5.10pm and went straight to the ward where we were shown to a little room and left for an hour with no-one explaining what was happening. We expected to be rushed in and lots of hustle and bustle but it was totally the opposite. After an hour (it felt more like 5 hours) the registrar came and introduced himself and said that the bed was ready for me to have my dialysis. I was told that they would take my blood whilst I was on the machine and use it for the purposes of cross-matching and tissue typing. I was pleased about this as I'm not good at parting with blood as my veins are rubbish.


I started my dialysis treatment, so what were my Mum, Dad and I to do for the next 3 hours, what do we talk about? Guess what mum did when I was safely on the machine - she went to the hospital shop on the pretext of getting something to eat. Dad and I resorted to doing a crossword in a woman's magazine with me providing the answers while dad wrote them down (as I had my dialysis needles in my fistula in my right arm).


Andy arrived to see me. Meanwhile a different nurse came on to the night shift and introduced herself as Lucy. She was really friendly and we had a good old chat about her kids. I was then seen by the transplant surgeon who really didn't have much to say to me, never mind I thought if he is good at his job that's all that matters! Looking back now I realise he was probably just as stressed as I was! Next to come along was the anaethetist who introduced himself and filled in yet more forms.

At this point we still didn't know if the transplant would go ahead or not.We had to wait for tests to be completed and results to be checked and we were told that we would know either way at around 10.30 at the earliest. I was nearing the end of my dialysis and the next person to appear at my bedside was the registrar. He was very friendly and explained exactly what would happen during the operation. He told me that as soon as my dialysis was over I would need an ECG to check that my heart was ok as well as a chest x-ray.


I finished on the machine, my arm stopped bleeding and I had the ECG which was fine. Then yet another nurse come along and says "right it's all go! Blood tests, cross-matching and tissue typing are all ok and we are going ahead as soon as possible" He produces a sexy gown for me to wear along with netty knickers and even more sexier stockings to put on. No time for the chest x-ray, as I am told to go and have a shower and put my sexy outfit on asap. The surgeon came back and hovered by the bed while I went to the shower room. No sooner had I got out of the shower and returned to my bed that he appeared again and said"right were off" at the same time throwing all my belongings off the bed!


By now the surgeon was in such a rush that he and nurse Lucy pushed me in the bed themselves, no time to wait for porters! I said my goodbyes to my Mum, Dad and Bro, at the ward, the surgeon made it clear that they weren't getting any further, not even to the lift! I surprised myself at how calm I was, only a few tears, Lucy was great at reassuring me and gave me a big hug and a kiss as she left me in the pre-theatre room!

This is it I thought... my life is about to change....

Sunday, 4 January 2009

Happy New Year Everyone!

The New Year got off to a great start as I received a phone call on New Year's Eve to say that my blood results are the best they have ever been! My creatinine was 161 (previously 187, and when on dialysis in the 1000's) My Haemoglobin was 12, and my White Blood Count was normal. This is being closely monitored at the moment as they have reintroduced the drug (in a small dose) that made it go haywire before! This meant extra trips to the hospital for tests, but it is worth it in the long run, because as soon as I am settled on the drugs they will hopefully reduce my steroids and I will look less like a chipmonk! Lets have a quick game of spot the difference....

I spent New Years at my Brother's in-laws house which would not have been possible had i not received my transplant, as I would have had to attend dialysis with it being a Wednesday night! I had a great night, we had a takeaway and saw in the new year with some champers! Click here to see some pics of the evening!

While I'm here I also wanted to tell you that I received a reply from 10 Downing street regarding my Battlefront campaign and Organ Donation.

The letter wasn't written by the Prime Minister himself... but it did say "Mr Brown was sorry to hear of your health difficulties."

It went on to discuss the suggested opt out system...

"In its report, the Taskforce does not recommend introducing an opt out system for organ donation in the UK at the present time. The Taskforce felt that whilst it would have the potential to deliver benefits, it would present significant challenges that may not be necessary in order to deliver the desired increase in organ donation rates.

The Government has accepted this, but in the light of the Taskforce’s view that donor rates can be optimised successfully without a change in the legal framework, has set a challenge to see 20 million people on the Organ Donor Register by 2010 working towards 25million by 2013."

The reply was useful and it seems that the government are committed to increasing the number of people joining the Organ Donor Register...

"The Government is firmly committed to seeing organ donation rates rise significantly and is fully supporting the implementation of the recommendations in the Taskforce’s first report. A large programme of work is already underway, which includes:

• Each Trust appointing an organ donation ‘champion’ to discuss organ donation with families as part of end of life care where appropriate;
• Recruiting new donor transplant co-ordinators across the UK; and
• Establishing a UK-wide network of organ retrieval teams across the UK to ensure timely and high quality organ removal from viable donors."

I was however disappointed that the letter did not mention the campaign whatsoever,
No mention of Battlefront, nothing!!!

Oh well a reply is better than being ignored I suppose!

Bye for now x