Share Your Wishes

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Inspirational blog 

Welcome to our blog

 

Here we will be sharing some inspiring stories.

By Share Your Wishes, Sep 4 2018 01:59PM

Abbie and Karl’s daughter Sophie recently became a donor after the wait for a new heart sadly became too long. We thank Abbie for her courage and strength in both sharing their story with us, and for agreeing to organ donation at such a sad time.

“Sophie was born in October 2014, healthy and beautiful - a baby girl to complete our family and a sister to William. Sunny, gregarious and into everything. We had a very happy 3 3/4 years together with Sophie - lots of laughter, holidays and happy memories. She loved music and swimming and, most of all, her big brother. Sophie was excited to be heading to nursery school in September.

Then one sunny June day in 2018, Sophie collapsed without warning. This was the first of what we now know to have been heart attacks. Sophie's beautiful heart was stopping because she had developed coronary artery disease - almost unheard of in children and something we could never have seen coming.

Sophie spent a short time in a local hospital before moving to the Brompton where she went into a coma and was placed on Ecmo life support after further heart attacks. Not long after this, we were moved to Great Ormond Street and she was placed on the heart transplant list.

Sadly, Sophie suffered a bleed to her brain and didn't live long enough to receive her new heart.

When we were told she wouldn't survive, we already knew that we must offer to donate her organs - we couldn't have accepted a place on a transplant list without being willing to offer this in return (and as her parents we had been on the organ donor list for many years).

At the time she died, the cause of Sophie's illness was unknown and the type of potential donations limited. We stuck with our offer for many hours, waiting to hear if she'd be eligible and if she had a match. Finally, some 15 hours later we were told she was able to be a kidney donor.

We know now that her tiny three year old kidney’s saved the lives of two grown men - an amazing thing to be able to hold onto in our darkest days.

We miss her every day. However, we are grateful that she was able to die with dignity in our arms and that she could save someone else.”

All those who donate enable love and life to live on in others. Those who receive such precious gifts will never stop saying thank you to their donors and the courageous donor families. Thank you.

#ShareYourWishes about your #OrganDonation decision with your loved ones as #WordsSaveLives #OrganDonationWeek



By Share Your Wishes, Feb 15 2018 03:28PM

Alexander has been in hospital for 9 months - waiting for a heart.❤️


His mum Tracy wants to encourage people to share their wishes on organ donation. She said “You can hold an organ donation card, but if your family don't know your wishes they can override your decision. Please have the discussion and help me spread the word. Alexander desperately needs to be back home with his family. Its taking its toll on our family. We love him and are missing being together. Thanks”


Alexander is currently in Great Ormond Street Hospital on the Berlin Heart,waiting for a transplant. He has been in GOSH since ‪2nd May 2017. Alexander suffers from Dilated Cardiomyopathy. This is where the left side of the heart is dilated and cannot pump enough blood around his body.‬ Tracy shares with you their story and how the Gift of a new Heart will give Alexander lots of fun times.


“Alexander had a rocky start to life by being born premature at 28wks. At 3 days old he was rushed to surgery as he was suffering from NEC. Part of his bowel had died and needed removing. the surgery went well and he made a good recovery. Whilst in NICU the doctors noticed a heart murmur, but this wasn't noticed until he was 8wks old. Further tests revealed he had DCM. Alexander went home on his due date and started meds for his DCM. He progressed well, remained on the meds and developed into a happy little boy.


We continued to go to cardiac checks ups but in June 2016 (Age 3.5) it was shown that his heart function had started to deteriorate. We were in shock. We hadn't seen any sign of heart failure. He was still a happy active little boy. More medication was started. We returned to another cardiac check up in September 2016 his heart had deteriorated again. This time the consultant suggested being referred to GOSH for a heart transplant assessment. Another shock for us.


We went for the assessment in November 2016. It was strange as he was still walking round playing, but, looking back there were signs of heart failure. We couldn't see them at the time. He didn't seem to walk as much, but we just thought he was being a fussy 3yr old. We went to the assessment and were told his heart wouldn't get better and he will need a transplant. We came back speechless, unsure of our little boys future. We were now starting to see obvious signs of heart failure - water retention, lack of appetite, infections, constipation, not wanting to move around much, just generally unhappy.


In January 2017 he suffered a hypo episode then in February 2017 he was admitted to GOSH with a clot in the left ventricle. We were in GOSH for a month. Following discharge he was ok for 2wks, then he stopped moving around. He was constantly in some kind of pain. Even getting dressed in the morning was a struggle. Over the 6mths we had reduced his hrs at nursery from 3 days a week to 1 hr 3 days a week, and that was a struggle. This was not the life we imagined for our little boy.


We came back to GOSH ‪on May 2nd for another cardiac check up. Something needed to change. He was just getting worse. He had maxed out on his meds and the next step was the Berlin Heart, a mechanical heart to act as a bridge to transplant. When we discussed the Berlin heart I was relieved as there was no other option. ‬


‪A year prior I had read about the Berlin heart and it wasn't the path I wanted to go down. It would mean Alexander staying in GOSH until he gets his new heart, the family would be split up. But, when we were told that was the next step,I was relieved. You would do anything to save your children, give them a chance of a better life. There are huge risks with the Berlin Heart, which were difficult to discuss, but what choice did we have, either let him go or give him a chance. There was no choice. He was put on the Berlin Heart on 8th May. It was a rocky start, you never knew what each day would bring. A very stressful time.‬


We are now further down the line and he still is the boy he was before June 2016. Our cheeky happy little boy. He does everything a young child should walks, plays, rides a bike, but has to stay in hospital plugged in. The Berlin heart has saved his life. Life is better for him but we are split up as a family.


My husband and I take it in turns spending 2wks in hospital then 2wks at home. We have a daughter who we also need to be with. We have a long weekend together on swap over days.


We are now waiting for a new heart. He is in great condition ready for his big day although he had sepsis last October, and just got over having flu.


We cannot wait for the day we get that call. All we want is to be home with our boy, back together as a family. We are trying to spread awareness of organ donation. It is a sensitive subject to discuss donating a child's organs and we appreciate that. All we can say is that when we do get the call, we will treasure his new heart, look after it and make sure it has lots of fun times! xxx”



By Share Your Wishes, Jan 19 2018 06:01PM

Joanne speaks with pride and emotion for the first time as she shares how her dad from Sedgefield in County Durham went on to save lives after a fatal epileptic seizure, and previous battles earlier on in life with bowel and throat cancer, at the sprightly age of 72 years old.


“My Dad’s Story


Ian Spring March 1942 – September 2014


In September 2014 my Dad, Ian Spring, became an organ donor at 72 years old. His corneas and kidneys were found to be viable for donation and within 24 hours of his death his kidneys were transplanted, saving the lives of two people desperately in need of a healthy kidney.


It surprised us that Dad could be an organ donor, he’d had bowel cancer and throat cancer, and, at his age, we presumed that he would be too old. We are so glad that our assumptions were wrong.


The first time I spoke to Dad about organ donation was when I was 17 and got my first driving license. He showed me the donor card application, which had come with the licence, and encouraged me to fill it in. I thought that was a bit morbid, but Dad always called a spade a spade and told me that the chances of me having a sudden death would probably be highest in a car accident, so it would be good to be an organ donor, and to put my donor card with my driving licence where people could find it, which I did.


Over the years, I realised the need for organ donors when I lost two friends who needed organ transplants; one was, Mark, the father of my son’s friend. He was in his 40’s and had heart and kidney failure because of type one diabetes. He died whilst being on the organ donor register. Another friend, David, died from an un-repairable damaged blood vessel in his 50’s.


As well as being the sort of man who called a spade a spade, Dad loved life and lived it to excess; He worked hard, and he played hard. He talked a lot, laughed a lot, loved his food, and his beer, and from 13 years old he smoked rolled up cigarettes. His own father smoked a pipe, so I’m guessing that Dad probably stole a bit of his tobacco to make his roll ups. He successfully gave up smoking on his 50th birthday.


When he was in his 60’s Dad finally gave in and accepted that he needed a knee replacement and had surgery. The operation went well, and his knee was fine, but when he came home, he complained of stomach pains, which were thought to be a side effect of the anaesthetic. He collapsed and was rushed into hospital. An (unknown) abscess in his bowel had ruptured and damaged his bowel. Dad had a section of his bowel removed and a stoma (colostomy bag) fitted. The section of bowel removed, was cancerous, and the doctor was certain that he had removed all the infected parts.


When he recovered, Dad’s new project was to heal and be well enough to have the damaged section of his bowel re-joined and the stoma removed, which happened seven months after his surgery.


A few months after this, Dad started to suffer from ear-ache and a sore throat, and his dentures felt uncomfortable. He sent the next 18 months going from his doctor and his dentist, taking courses of antibiotics, but the symptoms were persistent. He was sent to the dental hospital in Newcastle, as his gums seemed to be shrinking. Whilst he was being examined a dentist accidentally cut his gum and discovered a tumour growing just beneath the surface. Further scan revealed that Dad had throat cancer, which extended from the bottom of his throat right up to his gum.


Dad agreed to have extensive, life changing, surgery to remove the tumours and maxillofacial surgery to rebuild his throat and neck. To remove all the cancer, Dad had some of his jaw, gum and tongue removed. He already had false teeth, but after surgery, these were too uncomfortable to wear. His life did change, dramatically. His diet changed as he couldn’t chew and he couldn’t speak. He had radiotherapy and speech therapy to teach him how to form speech in a whole new way. His prognosis was that the surgery could extend his life by six months to a year. He wanted the surgery to try to have more time with his family and he would be a good case for the surgeon and medical students to learn from. Dad was very proud of being a teaching case and loved hearing his doctor recount his surgery to medical students. He was grateful to be offered the surgery and glad to be able to give back to others as a teaching case study.


Dad’s recovery exceeded everyone’s expectations and he was with us for seven years after his surgery.


In the last couple of years of his life he developed epilepsy and in September 2014 he returned home from a friend’s funeral and had a seizure. He stopped breathing and his heart stopped. My Mam called for help and their neighbours came running; both medically trained, they immediately began CPR whilst waiting for an ambulance. It’s hard to say exactly, but they think that it was after more than ten minutes of CPR that Dad’s heart started beating again. I received a phone call from the ambulance and didn’t expect dad to still be alive when I got to the hospital. I arrived at North Tees Hospital a couple of hours later to find him in ITU on life support. He had colour in his cheeks and he just looked like he was sleeping. Over the next hours the medical staff took excellent care of him, watching him round the clock for any signs of life but we realised that he was probably brain stem dead.


We talked about how proud Dad was to be a case study and how he’d always wanted to be an organ donor when he died, but at his age and medical history, we thought this was a long shot. We mentioned Dad’s wishes to the Sister on duty, before they even mentioned organ donation to us, and she checked the organ donor register on her computer. Dad’s details came up and it turned out that only a couple of months earlier, he had re-registered his details and updated his wishes to say that on his death he wanted to donate all of his organ and tissue. Seeing that on the screen reassured all of us, this was exactly what Dad would want and the Sister asked for our permission that if and when the time came, she could contact the organ donor team. We all agreed, but were worried that we would be wasting their time as Dad’s organs wouldn’t be viable.


The organ donor team met us at the hospital and they were amazing. They took us through the last hours of Dad’s life with such care that enabled us to understand everything that was happening and Dad died with the respect and dignity that he deserved.


They arrived, having already studied all of Dad’s (extensive) medical history and they went through it with us step by step. Surprisingly, they felt that Dad could potentially be a donor and they explained how different organs and tissue could be used. We gave permission for Dad’s wishes to be carried out and after he had received every test (twice) and everyone was agreed that that the only thing keeping him alive was the life support machine, we said our private goodbyes and Dad’s body went for surgery. My sister was even allowed to accompany him to the theatre, to wait and accompany him post-surgery to the mortuary. He was never alone.


He was treated with the utmost care during the surgery and you couldn’t tell that his organs had been removed; the only visible mark was a slight bit of bruising around his eyes, as his corneas had been donated, but we knew Dad wouldn’t have minded a bit of bruising to give someone the give of sight.


The next day we were contacted by the donor team and told that both of Dad’s kidneys were healthy and had been transplanted into two people, saving both their lives. His corneas were healthy and being held to be transplanted as soon as possible and that if he had been younger they’d have used his heart as it too was very healthy, but sadly too old to transplant.


We were thrilled. It was strange that in our grief, we felt happy, but it meant that all Dad’s suffering and determination to recover and keep healthy and well for as long as he could was worth something more – it gave life to others - and he could give something back to the medical profession he was so grateful to.

If he was here now Dad would give two pieces of advice:

1. Don’t smoke – don’t start smoking and if you are smoking give up today.

2. Register on the organ donor register and tell your family your wishes.


We often say that “thank you” isn’t enough and Dad thanked his medical team all the time. Donating his organs when he died was a huge thank you – a lifesaving thank you for the gift of his own life. “ #ShareYourWishes ❤️💙



By Share Your Wishes, Jan 18 2018 12:44PM

Please meet Diana as she tells you her Life and Liver Transplant Story - to which she dedicated to her Hero, her lifesaver - Helen.

“In 2008 at 45 I was doing my nursing training, I then sadly lost my dad and 2 weeks afterwards I started to feel tired. I went to the doctor and he suggested that I have a couple of blood tests but he thought it was probably stress.


I left it a week or so before I went but when I did go for the blood tests I was immediately admitted to the Royal Derby Hospital that day. Tests followed by more tests but still no answers.


Two weeks later, on a Wednesday, I went for scan. That evening they said I needed a transplant and I was blue lighted to Birmingham Queens hospital for a emergency liver transplant... “Wow - wasn’t expecting that ‘’. I was put on the Super Urgent List (this meant I found out later that I had 72 hours to live!).


I was so scared, miles away from home and all alone. Friday came and they said we have a liver. Following a test later that day they told me it was too big and wouldn’t fit and they would keep looking. This was a very scary time as they said my liver would only last a couple of days.


Saturday came and again they said we have an organ. I didn’t really get too optimistic.

Suddenly I realised that someone was losing his or her life for me to live. This really messes with your head, but due to toxins in my brain from my liver not working properly this didn’t really hit me fully till post surgery.


It took me a year and half to get over the numerous stays in hospital, with an incision hernia and ascites and having to have a stent put in.


When I came out in February 2009 I couldn’t walk, open a bottle of milk or get of the sofa without help. I had lost all my muscle, but I worked hard and my aim was to take part in sport again.


I started swimming with a rubber ring. Months prior I had found 50 lengths easy. Next I tried my hand at cycling. I bought an old bike of eBay and did the race in Bath in 2010. I got lapped and said I would never get on a bike again...But guess what I did!!


Next I then got picked to go to the World Transplant Games in 2011. This was the start of serious training as here I got a bronze medal in cycling. This just goes to show with a positive attitude and a lot of hard work anything is possible.


Next stop was South Africa for the World Transplant Games in 2013. The training went up to another level as I was determined to get a Gold medal. This was not only to promote organ donation but to do my organ donor proud to say to them that signing the organ donor register would show what a difference it could do to someone’s life. This time I achieved a Gold medal and it in front of both my mum and daughters. I will always be in awe of my hero my donor. She gave me the chance of 5 extra years with my daughters.


Then in 2015 in Argentina I went on to win 2 Gold medals in cycling again.

In 2017 The World Transplant Games were held in Malaga, so not so far to travel..Jess my daughter was with me here. It was so hot we were racing in temperatures over 30 degrees that was unbearable.


But I went on to win 2 Gold medals in the Time Trials and Road Race which was a hard race. But this time I did not only achieve this for Helen my Hero, but also for the amazing Alice. Alice was my young friend, who had lost her fight earlier last year. Alice and I always said we wanted to ride in the games together but this sadly was not to be but on that day Alice was firmly in my sights and my thoughts.

I owe my Life to Helen my Hero and my family for their support.”


#ShareYourWishes and by you having that conversation you could save and change many lives.


By Share Your Wishes, Jan 17 2018 02:46PM

Vanessa shares her story so you will share your wishes. She feels truly blessed and so thankful to her donor, “I feel like I have my life back. I make the most of everyday....live, laugh and love”


In 2005, Vanessa was struggling to keep up in her twice-weekly gym sessions. Thinking it was just a sign of getting older – she was 32 – she committed to more classes. Instead of getting better, however, her fitness rapidly declined. After numerous frustrating visits to her GP, who initially dismissed her symptoms as asthma, Vanessa eventually had an echocardiogram (a sonogram of the heart) and saw a consultant. At the appointment, she was told she had idiopathic pulmonary hypertension, a terminal illness. “I was in complete shock, I couldn’t take it all in. I thought I would just have some virus and I’d take some tablets and get better.”


Over the next seven years, Vanessa took increasing quantities of drugs to help manage her symptoms. By 2012, her health had started to go rapidly downhill. She began to experience irregular heartbeats, and underwent electric shock therapy. She was put on a drug called Flolan, which had to be administered intravenously 24 hours a day – and was told she’d take it for the rest of her life. Given 10 years to live at most, Vanessa asked whether a transplant was possible. Her consultant wasn’t keen because of the risk, but Vanessa felt it was her “only option as I was going to die anyway – I wanted my life back”.


She was referred to Harefield Hospital in Middlesex, a leading UK cardiothoracic transplant centre. She was told that the right side of her heart was so enlarged she would struggle to survive a double-lung transplant, and that the chances of getting a simultaneous heart and double-lung transplant were very slim. At the time only eight such transplants had been performed in the UK in the previous year, compared with 203 lung transplants.


Then she was thrown a lifeline. André Simon, the director of transplantation at Harefield, thought she would be a strong candidate for a new experimental treatment. In his previous position at Hannover medical school, he and his colleagues had started using a machine called the Novalung. It is an oxygenator, and works by removing the patient’s blood, “cleaning” it of carbon dioxide and returning it to the body. It is usually used as a bridge to transplant, buying a patient a few extra weeks in the hope that a suitable donor organ can be found.


Unlike other oxygenators, the Novalung uses the patient’s own blood pressure, which would allow Vanessa to stay more mobile. “It doesn’t have an engine attached,” explains Simon. He believed that Vanessa’s very high blood pressure could work to her advantage. If the Novalung took over the work of Vanessa’s lungs, her heart, relieved of some of its workload, would theoretically shrink back to a normal size, paving the way for a less risky double-lung transplant.


The catch was that this operation would be, in Simon’s own words, a “complete first” anywhere in the world.. The team at Harefield knew she couldn’t stay on the machine indefinitely but didn’t know how long someone could survive on it. “Vanessa knew very well that once that step was taken there was no way back,” says Simon. To take out the Novalung would cause certain death, plus there was a strong possibility that suitable donor lungs would not become available in time. Success “would be like winning the national lottery, but the price for the ticket was a life”.


Despite all these fears, Vanessa said yes during her very first meeting with Simon. The team wanted her to think about it overnight but, although she cried all the way home from the appointment, she didn’t change her mind.

The Novalung was inserted in August 2013. She was the first person to ever be kept awake on the machine. Her memory got hazier as her body weakened, but she clearly remembers that “everyone got super excited” when the theory proved right and her heart started to shrink.


She received donor lungs in September 2013 but her recovery was far from straightforward – she had experienced complete muscle wastage and had to endure gruelling physiotherapy to learn how to talk, eat and walk again.


In February 2014, six months after she was admitted to hospital, Vanessa went home. She’s now works full time. “I like to think I have helped, and hopefully other people with PH don’t have to wait for [combined] heart-and-lung transplants, perhaps it can save more lives.”

When Vanessa bumped into her surgeon. She recalls that he joked: “You crazy woman, it was just an idea.” “Well it worked, didn’t it?” she replied.


Vanessa said “I feel truly blessed and so thankful to my donor, I feel like I have my life back. I make the most of everyday....live, laugh and love”. Vanessa has been blessed to meet her donors family who she is now in regular contact with, and thinks about her donor, a woman of about her age, “a lot”. They take great comfort from seeing Vanessa doing so well.


Vanessa joins us and encourages everyone to #shareyourwishes with your loved ones about your organ donation decision so more lives can be saved.



By Share Your Wishes, Jan 17 2018 02:43PM

Most people waiting for a transplant need a kidney. #ShareYourWIshes with your families about Organ Donation.


Kidneys are also the most common organ donated by a living person. About a third of all kidney transplants carried out in the UK are from living donors.Living donation is when someone donates one of their organs – usually a kidney - to someone else, whilst they are still alive. Most of us can live perfectly well with only one kidney, and yet nearly all of us have two.


Most often living donors are close relatives or a friend of the recipient, but you can still donate an organ to someone you do not know. Our friends at Give a Kidney will be able to provide more information on this.


You can also donate part of your liver.