Personal Stories

Steve’s story

Steve's storyOn the afternoon of the 9th November 2012 I stood by the side of my beautiful daughter as her life support machine was finally turned off. Those huge hazel eyes I had spent 36 years loving suddenly opened. I was shocked and thought momentarily that Sarah was shouting at me through those eyes “what are you doing Dad?”

I needed to be alone and went outside where a tree felt the full anger, anguish and utter sadness that was seething through me. It wasn’t the tree’s fault but after the heinous roller-coaster our family had endured since Sarah was diagnosed with a chronic lung condition Idiopathic Pulmonary Fibrosis 2 years previously, the tree was just in the wrong place at the wrong time.

It doesn’t get much worse than that moment. And the anger is born partly from knowing that Sarah would still be alive today, her 3 children would still have a mother, her husband a wife and me a daughter, IF ONLY everyone could see how vital it is to become an organ donor.

A week later and our story would have ended so differently. A week later life saving lungs became available… That was simply a week too late.

Sarah had carried her illness with incredible bravery and stoicism, even insisting on taking part in a 5 mile walk which she took days to recover from. And her final wish. Well her final wish was to lead from the front and have her organs donated as we all should.

The night I saw Sarah’s huge Hazel eyes open for the last time her organs saved 3 lives. Maybe she was really shouting… “you know what to do Dad.”

iLIVEiGIVE are so proud of Steve Gazzard and so proud that he is part of our quest to get everyone signed on the organ donor register. He has worked tirelessly in Exmouth for 2 years to get his community to sign onto the organ donor register. In large part through his commitment Exmouth now has a bigger percentage of their population on the register than any other town in the country.

Whilst iLIVEiGIVE are proud of him, we know a lady in Heaven whose huge hazel eyes will doubtless be gushing with the most pride today.

Kathryn’s story

Kathryn's storyI’m Kathryn, married to Rob with two daughters, Sarah and Rose. My problems started years ago and were mainly symptoms of fainting, but after extensive tests, doctors were unable to find anything wrong with me.

Eventually, when I was 49 and my symptoms had got worse, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension (PH), which is an incurable and progressive rare disease that damages the lungs and the right side of the heart. My disease was classified as severe on diagnosis and my heart was failing.

I was quickly placed on a heavy regime of medication including a twenty-four seven, intravenous drug to help my heart and lungs. My condition was deteriorating when I was referred for transplant at Papworth Hospital, where I was already being treated. I needed a heart and double lung transplant and I was accepted on the transplant list in September 2011.

It was all a massive shock and I made adjustments to my lifestyle. I gave up my career as a teacher and paced myself with what little I could manage. I lost my independence, but was happy to use a wheelchair so I could get out and enjoy precious time with my family.

Eventually after a two years wait, I got my transplant call and in September 2013 I received my precious gift of a new heart and lungs. Life is now so different, I am healthy and well again and the wheelchair has gone. I can walk for miles, exercise and do all those simple things once more like driving and shopping. I’ve got my independence back.

I will always be grateful to my donor and their family for giving me the gift of a new life and for giving me this second chance to make the most of life. I know first hand how precious and unpredictable life can be.

Tracy’s story

I have always been a very active person with oodles of energy. However, during 2009/2010 things began to change. I was always tired and just didn’t feel right. This lead me to visit the doctor on several occasions to be told each time that I had a virus. After a while I decided it must just be me getting older!!

During August 2010 I was vomiting regularly and my family asked me to visit the GP again. This time I went with the resolve that they will perform some tests. The doctor advised again that he thought I had a virus but did some blood tests just in case.

That evening, after a call from the out of hours doctors, I was admitted to the medical admissions unit with kidney failure and then into the high dependency unit. I had a blood pressure of 250/150 and a kidney function of 6%

The next few weeks were a period of immense change and an emotional roller coaster. The thing which effected me the most was the selfless and most generous offers I had from friends and family to be tested to see if they would be a match for a living donor transplant.

My mum was eventually tested and found to be the best match. After numerous tests to ensure that donating a kidney to me would not be detrimental to her health, she had the go ahead. From the moment of diagnoses to now, the only thing that has brought a tear to my eye is my mum’s sacrifice, she is truly inspirational.

During this time my kidney function fell to 4% and I commenced peritoneal dialysis to ensure I was well enough for the transplant when the time came.

I was fortunate enough to get the date for the transplant very quickly and on the 11th January 2011 mum and I were at Derriford Hospital for the operation. The operation was a great success. Mum was discharged after 4 days and I was after 10 days.

Now my wonderful mum is as well as ever suffering from no implications from donating a kidney to me and my life is wonderful. I am back to the person I was five years ago with energy to spare. Mum has genuinely given me the gift of life, as I have my original sparkle back and I am living life to the full once again.

I have entered the transplant games for the first time this year and I’m swimming before work at least three times a week in preparation. We are all going to Bolton in August to represent Derriford. Each person in the team has a different story to tell of their journey and each of us are passionate about organ donation and the difference it can make to people lives.

If you are not signed up to the organ register, please think about the life your gift would be improving, but also, please ensure you discuss your wishes with your loved ones.

If you would like to read more about my journey, please take a look at my blog:

Tracy's Story

Picture from Helston Flora Day this year shows clearly what a picture of health I am :-)

Ava’s story

Ava's Story
Ava was born on the 5th August, 2008 with the rare form of liver disease, biliary atresia, as well as multiple congenital heart defects.

She underwent her first surgery at just 4 days old in Bristol Children’s Hospital to open a valve in her heart and from there she was transferred to Birmingham Children’s Hospital where she was to be diagnosed with biliary atresia, the narrowing of the bile ducts in the liver, which led to the poisoning of the organ. At 4 weeks she went to theatre to have the Kasai procedure. Unfortunately, for Ava, this wasn’t a success and she quickly entered end stage liver failure. She was too poorly to be at home. She was luminous green with jaundiced and suffered regular bouts of cholangitis. Her tummy then became so swollen with fluid that she could no longer sit, or move. She had regular bleeds due to portal hypertension and was on 24 hour infusions of drugs to control the bleeding. She was placed on the Transplant list at 5 months old weighing in at just 12lb. Every day we watched her deteriorate, she was literally slipping away before our eyes and all we could do was hope and pray that somewhere, someone would say ‘yes’ and be her hero.

On the 10th May 2009 we got the call. Ava was incredibly poorly, but she fought through the lengthy 13 hour surgery. Initially, the transplant was thought to be a success, but unfortunately, the blood supply to her new liver had been compromised. The organ simply couldn’t function. We are blessed to know that the wonderful donor who saved Ava went on to save 3 other lives, and the other half of the liver that Ava had, saved another too. We were beyond devastated, we knew that we had been lucky to have found the first hero, the chances of finding another were near on impossible. Incredibly, despite being in total organ failure, on full life support and suffering two cardiac arrests, as well as being told that we would soon have to say goodbye, our girl clung to life for 5 days… in the small hours of the 15th May, when the decision to turn off her life support was being made, another hero came forward. We knew it was a long shot, but thankfully the incredible intensive care team were willing to believe in Ava, just as much as we did!

By some miracle, the surgery was a success! Another angel donor and their family had made the selfless decision to save our baby’s life.

It was a long couple of months in ITU, with numerous infections, additional surgeries (including an emergency splenectomy in her cubicle) and breathing issues. She was left ‘open’ for several weeks to ensure the same catastrophic issues that she’s suffered before did not reoccur.

She returned to the ward on the 28th July, and we were allowed home on the 3rd August, 2 days before her 1st birthday….it has been an incredibly long, eventful year!

It will be a lifetime of care and medication for Ava, she still has issues with portal hypertension, her cardiac care, respiratory issues and super low immunity due to her anti rejection medication and the lack of a spleen but all in all, we are incredibly lucky to have been blessed with the most amazing life! She is happy, beautiful and full of the joy of life! She loves school, singing, dancing, going to rainbows, a being a real girly girl. She even loves seeing her wonderful care teams in the hospital, and has made some amazing ‘special tummy’ friends.

There are no words to express our gratitude to our incredible donor families, the amazing teams that we are blessed with, and the most wonderful friends that we have met along the way.

Dave’s Story

Dave's StoryHi, my name is Dave and I have been an organ donor for some time now. The reason I became a donor is simple. Her name is Vicky Scooby (Vic Small). For those of you on this page you may have already seen her pic and read her story. We have known each other for about 25yrs now. We were a couple in 1989 as teenagers and met up again in 2009 and again were a couple for about 18 months before the 125 mile distance between us took its toll.

It was during this time together again that her story of heart failure and multiple operations and eventual need for a transplant were fully made clear to me. Once the gravitas of her situation became more and more clear to me I made the decision to become an organ donor. We are still absolutely the best of friends to this day and I still make the 125 mile trip down to Bournemouth to see her for a catch up when I can. She is the most inspirational, fun loving, happy person I know.

Even through all her hardships of her heart problems she still constantly smiles and lives life to the fullest she can. Definitely one of life’s great and inspirational people. On my latest visit this weekend she bought the iLIVEiGIVE page to my attention so I joined without hesitation. She also made me aware of the iLIVEiGIVE t-shirt she had and said it would be good for others to see me wearing this with my donor card and to read how and why I became a donor and how important it is for me and others to be one,and it may also help others make the awesome decision to also become a donor. It’s one of the best decisions I have ever made and it makes me proud to know that I can help others live or have a better chance of life after my death.

I’ve also said to Vicky that she can have 1st dibs on my heart if it ever came to it – I know it doesn’t work like that but still, she’s got dibs on it ok? Not only can we pass on our organs to others, but also the t-shirts and the message too !!

Thanks for reading my story and to anybody else that is contemplating becoming an organ donor I say this…..’DO IT !’

One of the best things you can do as a human is to help others live a life they have not yet known. Thank you and please sign up!

Ella’s Story

Ella's Story My name is Ella Tovell, and I’m sixteen years old. When I was three months old I was diagnosed with dilated cardiomyopathy, so I was blue lighted down to Great Ormond Street Hospital in London and remained there for a few weeks.

I had a transplant assessment when I was four, but I was stable enough to keep my own heart for a while yet. After that my condition was monitored with drugs and I stayed stable for fourteen years.

In April 2011 I went for an appointment at Great Ormond Street to the cardiac clinic. I was told that my heart didn’t look as good at it previously had and so my drugs were altered to see if any improvements were made. Six months later when I went for my next appointment, I was told I had pulmonary hypertension: because the left side of my heart was so weak, the right side was having to work twice as hard and when blood was being pumped to my lungs, some of it was staying there and the pressure in my lungs were increasing.

In October 2011 I was told that Great Ormond Street wanted to perform a cardiac catheter to see how high the pressure was. However when I had the catheter it didn’t go well at all and I ended up on intensive care as my heart didn’t like the anaesthetic. The next day when I woke up a doctor came to see my and told me we needed to start thinking about a transplant. All I remember was being terrified and just crying to my mum and dad.

Anyway, a month later, in November 2011, I went on the transplant list and four days later my mum woke me up in the middle of the night and told me they had a heart for me. It’s all a bit of a blur, but I just remember saying it was too soon and that I was so scared. I got to the hospital and my mum went on the bed with me down to theatre and I was put to sleep. The operation was a success and everything went smoothly. The doctors expected me to be on intensive care for three weeks and in hospital for a couple of months because of how poorly I was, but I was on intensive care for only three days and out of hospital in two weeks in time for my fifteenth birthday and Christmas.

It hasn’t been without its complications since the transplant but I can honestly say it is the best thing that has ever happened to me; it was so hard at the time but I wouldn’t change it for anything. I’ve met so many amazing people through my transplant and I have had the chance to raise over £6000 for the hospital who have cared for me for so long and continue to do so, but more importantly I have been able to see first hand how important organ donation is. Without my donor I wouldn’t be where I am now, which is doing my GCSE’s and soon I am going to college. I get to live each day like a normal child, which is what I have always wanted. Growing up I had a completely different childhood to all of my friends but I always told myself that it was because I was strong enough to handle it, whereas someone else might not have been: I wouldn’t change anything about my life at all.

Tyler’s Story

Tyler's StoryMy ten-year old son, Tyler, was a normal healthy boy until June/July 2012. He started to become tired very easily and also had a blue tinge to his lips on and off. We took him to the GP who said it was just a childhood virus and not to worry. In time his appetite dropped and he also vomited after the simplest of tasks… walking short distances, climbing stairs etc. We took him back and forth to the GP to be told it was a urine infection, then it was another ‘virus’, then it was dehydration and on it went! After the sixth visit I insisted he had some tests (his heart had been checked with the doctor listening through a stethoscope, but nothing found), so they arranged an appointment at Bath RUH for an ECG, chest X-ray and blood tests. Once they had done the ECG and chest X-ray I was taken into a room and informed that Tyler had a very poorly heart: we needed to be transferred to Bristol Children’s Hospital straight away by ambulance!

We arrived on PICU at 6.30pm and Tyler had several tests done and was put onto IV inotropes to support his heart function. Myself, and my husband Dave, were then told that Tyler had Dilated Cardiomyopathy and his right ventricle was severely dilated – his condition was critical. It took the doctors several days to stabilise the dilation due to the unknown cause of Tyler’s condition; usually his symptoms were seen on the left ventricle not the right. Thankfully his condition eventually stabilised. After four weeks we were given the news that Tyler would not survive without a heart transplant and he was put on the urgent transplant list while we waited in hospital. We had a false alarm after nine weeks, but unfortunately the donor heart could not be used. However two weeks later we got another call and Tyler received his gift of life on 27th November 2012 at GOSH London. Fifteen days later we took our little hero home! After tests on Tyler’s old heart he was diagnosed with ARVC. Our boy is now full of life & brimming with energy! We will never be able to thank the donor family enough for giving our precious son another chance at life – they are truly amazing people and will always be in our hearts