warm wishes from the Team at #Shareyourwishes

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By Share Your Wishes, Nov 30 2020 06:41PM

Reading articles about others experience of losing a child prompted Viv to share, in her own words, about her oldest child, and her only daughter, Katie who sadly passed away ten years ago. Katie died suddenly from a brain haemorrhage in December 2010 aged 27.

“Katie had been suffering from sinusitis on & off for several weeks, this in itself wasn't unusual as she'd suffered from the affliction for many years. This time though she suffered from severe headaches which got so bad she attended A&E, in the hospital where she worked as a phlebotomist, they gave her pain killers and advised her to see an eye specialist, 2 days later feeling no better she asked me to drive her to see her GP, extremely unusual for the staunchly independent Katie.

The advice on both occasions was to treat the sinusitis symptoms & that the headaches & vomiting were associated but would need investigating if they continued. They were right it turned out, but what no one realised was that the sinusitis had led to a brain abscess which caused a blood vessel to rupture and Katie's very premature and devastating death.

My (Katie's) story begins on the day (15th December 2010) that we visited the GP. I can still see her pale face, green coat & black hat shoved on to hide tatty bed hair as we sat in the waiting room.

I was concerned for her pain but not unduly as it occurred quite frequently, only the week previous she'd battled it for a Christmas night out with her girls, she suffered the following day though with one of the worst hangovers she'd ever had.

Back to the GP visit. The young lady GP checked Katie over, giving her quite a thorough examination and prescriptions for various pills to control the headaches & associated vomiting, with the promise of those further investigations if it continued. We visited a local store & pharmacy to collect the pills & wandered around a little before heading home with Katie choosing a magazine, some lunch & some lovely long socks and other treats for her Christmas stocking. A normal situation, apart from her looking pale & peaky, with still no cause for great concern.

On returning home we had lunch & decided to watch the most recent of the Twilight films, Katie's favourites which she'd been nagging me to watch so much I'd given in & watched all the earlier episodes ready for this one! Part way through the film Katie said she was going back to bed as she felt unwell, taking the new pills in the hope they'd help. She came back down about an hour later for a drink & asked what I'd thought of the film. I told her I'd stopped it as I wanted to watch it with her another time. She returned to bed & I popped up to see her at intervals holding her hair & rubbing her back as she vomited, wishing she could stop long for the pills to have effect & googling her symptoms in case there could be something else we'd not thought of.

Phil came in from work as she I was preparing tea & could hear her upstairs vomiting, "I wish I knew how Ill she was ”I said to him, Katie's illness threshold was usually not very good to say the least & she could be a bit of a drama queen with the mildest of symptoms! Phil went to see her, comforting & supporting her as she vomited and making her comfortable in her brother's bed, nearer us & the toilet as her bedroom was another floor up. See, I still wasn't overly concerned.

Throughout the evening Katie dozed on & off vomiting at intervals but at least that seemed to be subsiding. I encouraged her to have fluids but in the main we left her to sleep thinking this would be therapy in itself. Around midnight as we went to bed I checked her again, worried that the symptoms had lasted so long but convincing myself that she probably had the dreaded winter vomiting virus which was doing the rounds.I was however becoming more concerned.We discussed whether or not to call the emergency Dr and, convincing myself they'd probably agree with my diagnosis & recommend I did what I was doing, we decided to contact them in the morning if there was no improvement & I set my phone alarm to wake me 2 hourly to check on her.

From there the horrendous timeline starts:

1:30. Sleeping lightly, due to my concerns I guess, I heard her vomiting and went to assist her, giving her some water helping her to the toilet & to settle again.

4:00. Woken by alarm I went to check on her, she seemed more settled although she had vomited a little again. I asked if she felt better & she just nodded, half asleep, I propped her onto her side with pillows feeling slightly relieved things were improving a little.

7:00. Phil got up for work, I went into check on her leaving the bedroom light off with just the landing light to see by. She'd rolled away from the side I'd left her on and I went to her saying " how are you this morning chick" gently pulling her back towards me so I could see. She lay on her back looking up and in the dim light I could see that her face wasn't right, her left eye looking swollen shut. Confused by what I was seeing I asked her if she could open her eye & she did so using her hand....now I'm starting to be really concerned.

I grabbed a facecloth from the bathroom thinking maybe her eye was sticky & put the light on so I could see. I opened her eye myself surprised & shocked to see she had a very large pupil, at the same time realising she's not really responding properly. I called Phil to come "....am I seeing what I think I am?" He just nodded looking perplexed & scared, mirroring I'm sure my own demeanour.

He rang the ambulance while I ran upstairs for clean pyjamas, she'd wet herself & I knew she'd have been mortified if I let her go to hospital like that. I freshened her up, putting clean pants on her & she lifted herself to assist me, still not really grasping the situation as being critical and in nurse/ automatic pilot mode. I somehow rationalised that a vessel had popped in her eye due to the vomiting!!! Approximately 07:30 the ambulance crew arrive & I stand helplessly watching them assess her, noting that her blood pressure was ok, temp slightly raised & relaying this information to Phil....majorly concerned but her vitals were ok right? She must be ok right?

I travelled in the back of the ambulance while Phil brought the car, lights & sirens. "You know it's standard procedure Viv for all head injuries", did she have a head injury? I just couldn't equate the information, the nurse in me squashed and made incapable by the frightened parent. Sitting beside her pulling at her oxygen mask, restless & incoherent I thought " just wait until I tell you about all this drama you've caused!" Concerned? God yes, panicking, frightened, confused but never once grasping the situation.

On arrival at the hospital (where we both worked and where only 2 weeks, I'd been treated for pneumonia with Katie supporting & worrying about me) she was rushed into resus, & I was asked to wait outside for a moment. A good friend & colleague saw me as she arrived for work ( must have been 8:30 by now but time was just standing still for me), crying my first tears I told her the situation and she stayed to support us & contacted our other friend who arrived in moments. I can reminisce now & see the look in their eyes, the sympathy, understanding acknowledgment of the situation, I wasn't getting it yet.

In resus it was clear Katie was deteriorating, her eye wasn't bulging anymore but her confusion was growing & her movement seemed to be reducing. I still didn't grasp the situation, looking back I don't know how I could not have known but I truly didn't, it felt like I was watching a film, one which started when the ambulance crew arrived and one in which I had no part. Bloods being taken, drips inserted, investigations ordered, machines bleeping, nurses panicking ( I could hear that, they were her friends & colleagues as she'd worked in A&E previously) stabilising her as well they could prior to her brain scan...at least we'd know what we were fighting now....

sent Today at 16:50

Meanwhile my friends are trying to contact our sons, Chris in Thailand with no phone and Nick at uni with no phone signal but thank god for social networking sites.

By now we're in a tiny little visitors’ room, the same one I'd seen my sister sitting in 18 months previously when her son had died. Ginette was with us, I rang family to tell them the situation...Phil looked lost. The Dr came into the room with the results of the scan...." massive bleed on the brain, inter cerebral, white on scan, serious" words, just words, they could've been a foreign language. He was very good apparently, told us the situation just as it was, didn't beat about the bush, presumed that as sister of a rehabilitation ward I'd know what he meant...the nurse in me was well & truly squashed by now, I just wanted normal words and someone to tell us what her chances were.

You see, I'm beyond concern or comprehension at this stage, no panic, just devoid of emotion, I can remember asking Phil if he understood what the Dr had said, when I really didn't understand myself.

We stood/ sat/ drank tea in that room shell shocked, still bit players in a big drama, not involved but on the outskirts watching, 2 parents stunned & feeling totally useless & helpless in a terrifying situation:

Katie was transferred to ICU, I forget the timeline now it's hazy & unimportant.

We were kindly & gently led to another little visitors room, this one nicer, softer, with comfy sofas alongside the compulsory tea machine, but it's purpose just the same, a holding bay for family in peril, a parallel universe where time stands still.

My Mum arrived with my sisters, Phil's mum & brother, Elizabeth & Ginette, all huddling wondering what was happening. By this time, they'd managed to contact our boys & asked them to ring me, so could relay the news that their big sister was critical, how the hell did I do that?! Nick says I just told him it was serious & to wait for news, Chris in Thailand was told the same & to get home quick, I can't remember in detail though these conversations, some things I guess are too hard to recall.

We were allowed into see her, restless still, not really conscious. Still my Katie though.

Decisions were made after much discussion to transfer her to the Walton neuro centre in Liverpool. By this time, it's about 12 midday, we know now the delay was because Walton didn't feel she'd benefit from being transferred because she was too poorly & they couldn’t do anything to change that.

For us waiting on news & those decisions it was torture, Phil overheard someone talking on the phone about the weather & suitability for flying & was distraught that such things could be responsible for his daughter's welfare, he hated living on an Island at that time & I think he still does.

We were visited by senior managers (as I said earlier Katie as a phlebotomist was one of their own as I was too as a senior Ward Sister) reassuring us that everything possible was being done.

To help Katie in transfer they told us that they would have to put her on a ventilator for which she'd need sedating, we took turns to see her for a few moments before she was sedated. My sister Julie came with me to her bedside, I couldn't stop the tears as I looked at her precious face still showing signs of confusion. I talked to her, told her what was happening & that was we'd see her soon, I even admit to praying although I did that when no one else was there. Julie commented on how beautiful she was and what a good Mum I was......I didn't feel it.

Once she was sedated and out on the ventilators, we watched her leave her in the care of the inflight team, charge nurse Dave promising to contact me as soon as they arrived at Walton. I can remember saying " please take care of her' as they left. Phil & I headed home to pack a bag for our flight to Liverpool later that afternoon (4pm) , hardly speaking on the journey home. Neither of us daring to discuss possibilities or scenarios. I grabbed a bag of things for Katie, toiletries, nightwear etc and her precious phone which she was bound to need. Pausing in the hall before leaving the house we looked at each other, Phil finally speaking first cried "she can't die, she's got to have a baby". She had her tarot cards read 2 weeks earlier and she was told she was about to meet the love of her life & have a baby. We hung onto each other sobbing before leaving the house which would never be the same again.

Phil's brother drove us to the airport, panicking because the weather was about to change & snow was coming in. We sat in the departure lounge surrounded by happy people going on holiday for Christmas still not believing the situation we were in & trying to eat, something we'd not done since the night before, strange how your body can function without food, we weren't even hungry.

Sometime around now (again time just had no meaning) I received the promised call from Dave who told me that Katie was at Walton. I asked her if she'd been ok on the flight & he responded " the flight was ok" I didn't realise at the time why he'd avoided my question & we were just relieved she was in the best place for her condition, allowing ourselves to breathe a little and prepare to support her after she'd been to theatre to have the pressure relieved from her brain which we'd been told was paramount. At this time I'm still numb, the whole situation still feels surreal and I'm bargaining in my head with God to please let me keep her, whatever conditions she's in, just let us bring her home where we can look after her. Phil & I look out of the taxi window lost in our own thoughts.

We arrived at Walton somewhere around 4:30 I guess, racing through corridors & sets of security doors (so frustrating to be stood buzzing an intercom knowing your daughters on the other side of the locked door & no one's answering it!) When we eventually gained access, we expected Katie to be in theatre or at very least being prepared, she'd been there about 2 hours by now, we were allowed to see her, still sedated & ventilated with tubes & wires everywhere.

We were then shown into yet another visitor's room, this one the starkest by far and sheared by everyone in the unit. After what seemed like hours, but must have only been a few minutes, the door opened, and a team of doctors & nurses entered. The consultant introduced himself & immediately informed us that Katie's other pupil had 'blown' ( caused by increased pressure on the brain) before she'd even left the Isle of Man and that there was no hope, there would have to be a reduction in sedation overnight to see if the there was any brain activity but for all intents & purposes that was it, our gorgeous girl was gone. As I write this I'm back in that moment, tears falling as we realised the fragment of hope we'd had was gone & she was never coming home. Me asking Phil if he understood what had been said & him just nodding, we were both just so numb. I hadn't expected this at all, wasn't prepared for it, it wasn't meant to happen we had been unable to protect our girl.

After contacting our families to update them with the devastating news the rest of that day was spent sitting by Katie's bedside, touching her hands, face, hair trying to absorb everything, her very essence. She was warm, looked like Katie but just asleep, it was so surreal & I can't put into words the devastation & sadness I felt. Phil just stood & cried looking bewildered & shaking his head in disbelief. It's heart wrenching to see the man you love so distraught & be unable to comfort him because you're in the same place.

Nick arrived from Sheffield later that day, I was blown away by his resemblance to Katie, I'd always known they were alike but for some reason it was even more apparent. He says he knew it was bad news the minute he saw us. I'm again unable to recall the conversation we had with him, vividly etched in my mind though is holding him while he sobbed at Katie's bedside, they were so close & he looked up to her while she looked after him, she'd only recently been to see him at his uni, taking him shopping to stock his cupboards for him and buy loads of toilet roll which she was amazed to find he'd none of!

There were no rooms available for us nearby, so we spent the night in that visitor's room, Phil on the floor, Nick & me on chairs None of us slept though, talking about Katie, partly hoping for signs of brain activity and at the same time dreading it because it would mean they'd have to treat her whatever her condition. Whilst I'd tried that bargaining with God about keeping her in any way, shape or form, in reality we knew she'd have hated being trapped in a useless body or a persistent vegetate state, our thoughts & emotions were totally torn. The one thing we did discuss was organ donation. Phil broached it first, I'd thought about it too, we knew it was what she would have wanted, and we all agreed to go ahead in that situation. It was still very surreal, whilst the heart's still beating a person is still alive so, although we knew she was clinically dead and were discussing organ donation, we had to wait for the outcome of reduced sedation before it was official.

The next morning, we were informed that, as they'd thought, there was no brain activity and they would conduct brain stem tests later that day. By now we were totally numb, tears not falling & emotions in check while we tried to deal with the enormity of the situation. My brother & some of Katie's friends arrived & we sat in that room & talked about Katie, and all sorts of irrelevant rubbish , somehow avoiding the obvious elephant in the room, taking it in turns to sit with her.

The brain stem tests were conducted that afternoon and the Team came to the visitors room to see us with the results, removing other visitors to give us privacy and the news that Katie hadn't responded to any of the tests and was declared dead with only the ventilator keeping her 'alive'. We already knew what the outcome would be, Katie had begun to look different & we could see that the essence of her, what made Katie Katie, was no longer there. I felt as though they were just executing their formal & legal duties, ticking boxes, although they did it very kindly & respectfully, before raising the topic of organ donation. As we'd already discussed this we agreed immediately and, after a respectful few minutes left on our own the transplant coordinator came to see us to discuss the procedure & practicalities, the transplant team would prove to be the most amazing support at that time & in the months ahead.

I still don't know how we dealt with this so soon, even though I totally understand why it had to be a quick decision. By now (we were informed) Katie was at risk of cardiac arrest due to her condition & that would render the organs useless, so plans were put into place rapidly to do all the tests necessary prior to transplant. One of hardest things for me was seeing nursing staff take blood knowing they were no longer working for Katie but in the interest of the recipients.

We spent as much time as we could with our lovely girl, I needed to hold her hands, touch her hair, connect as much as possible before she was taken from us forever. So much had happened in a few days, it was Wednesday when we had that GP visit & it was now Friday, yet it felt like weeks.

My now concern was for Chris coming home from Thailand, drunk & distraught he had somehow managed to book a flight (it was the week before Christmas, so demand was high) which was due to arrive in London the following morning. The threatened snow had arrived in abundance & I was really concerned that the plane wouldn't be able to land, or the trains would be grounded. We had tried to prepare him for the likely outcome but knew he just hadn't really grasped or accepted it. I still can't begin to imagine how it was for him dealing with all this on his own (apart from his good friend) on the other side of the world. He was due to arrive around 6am and the transplant procedure was scheduled for around 11, we hoped & prayed he would arrive in time to see Katie before she went to the operating theatre.I was also concerned that everyone knew Katie had died apart from Chris as he was airborne when we were given the news, I feared that somehow he'd find out before we could tell him via Facebook or some other electronic means. Phil & Nick eventually convinced me that as he was flying, he'd have no contact with anyone until he landed & rang us.

By now we were physically & mentally exhausted having spent 2 whole days & a night in the hospital and managed to get rooms in a nearby hotel. Leaving the hospital felt surreal. The snow was thick & it was freezing cold, clear & beautifully Christmassy. I wanted to scream & shout at the injustice of everything, but I didn't, and still haven't really to this day released the scream that sits like a bubble in my chest.

Where are we now? Oh yes Premier Inn at Aintree, forcing ourselves to have some food, our mood somehow lighter than it had been all day. We've discussed that since. How could we sit in a bar eating, talking normally, drinking wine, throwing snowballs on our way back to our room? I really, really don't know, we felt utterly wrung out & maybe just needed some normality. We tried to sleep, well Phil did bless him, he could sleep on a rock! I struggled, waking with a jolt frequently back into reality & tears. Sometime in that night I woke with a start & panic, sitting bolt upright I woke Phil up saying "she doesn't know she's dead" and the tears started again.

Around 7am we had the call from Chris telling us he'd landed safely and was on a train to Liverpool. His first words to me were " I know Mum", he'd turned his phone on during a scheduled stop (I hadn't thought about that possibility) to read a text " I'm sorry about your sister, she was a lovely girl...." The 'was' said it all & he needed the support of air hostesses the rest of his journey, I felt so bad for him & could have kicked myself that that could have happened. He expected to be with us around 10am, we asked him if he wanted to see Katie prior to the organ retrieval, he decided not & would instead see her after the operation when the ventilator would be removed. I couldn't hug him tight enough when he arrived, tired & surprisingly not showing much emotion, he told us that the hostesses had looked after him & had to help him off the plane when it landed. The first thing he did at the airport was to find a computer so he could check Facebook, I guess he was all emotional out after reading the messages on his & Katie's wall.

We had several hours before the operation would be completed & spent more surreal time wandering round Liverpool shops, full of eager Christmas shoppers with Slade or Wham wishing everyone a wonderful Christmas and us in our own world of grief, God knows how we did that.

Around 5pm back at our hotel we contacted the transplant co-ordinator who informed us that that Katie was ready for us to see her. She was in a different part of the hospital off the theatres, no longer needing ICU. Now we really knew she had gone, until now she'd been warm, still 'breathing' and we could pretend she was still with us. Not now though, I was totally unprepared for how she would look, crazy as I'm a nurse, and felt sick to my stomach and so deeply saddened at the loss of our lovely girl. Most of the tubes had of course gone, some remaining until after post-mortem had been conducted. We all sobbed, Chris especially hurting so much seeing his sister for the 1st time in months.

The following day we returned to the Isle of Man, to a home where, only 11 days previously Katie had put a Christmas tree up ready for my return from hospital - we stood together in front of it as if it was a symbol and just wept.

Christmas hasn’t been the same since. For the first two years it didn’t happen in our house at all, then gradually I realised I wanted to acknowledge, if not celebrate it. We’ve coped by changing family traditions, we always had Christmas Stockings, even as the children grew older, they still loved them, we don’t have them anymore. I can’t go to church, Carol services etc as they’re just too hard and emotional but we enjoy family time with the boys and our extended family. Katie had always put the angel on the tree, her job from being a toddler lifted up by her Dad, a job so fiercely guarded we had to buy a star when she was travelling one Christmas as she wouldn’t let us put the angel on without her. We don’t have an angel on our tree anymore

We’re extremely proud that our happy, funny, caring girl gave life to others in her death with 6 people benefiting from her organs. One little boy asked Santa for a new liver and got his wish. I wish we’d got ours.”

Please #ShareYourWishes about your organ donation decisions with your loved ones.

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.