warm wishes from the Team at #Shareyourwishes

Inspirational blog 

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Here we will be sharing some inspiring stories.

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 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.