Lisa, Susanna Cork, Ben Cork and Mandy.
Thursday, 22 July 2010
Lisa, Susanna Cork, Ben Cork and Mandy.
Sunday, 11 July 2010
"I was working my last shift before going to France for our family holiday when one of my colleagues said my husband was on the phone. He was telling me my eldest son George, aged 10, had been knocked off his bike and was being airlifted to the hospital where I work as a nursing sister. I tried to tell myself that perhaps they'd sent the helicopter because I live in a small village, because it was for a child or because someone had exaggerated the facts on the phone when they'd dialled 999. The gravity of the situation dawned on me when I arrived in resus in A&E to hear the doctor calculating the charge to set the defibrillator at and what dose anaesthetic drugs to give.
After a few minutes, he still hadn't arrived so I rang my husband. There'd been complications and they were taking George to Royal Preston Hospital. George had had complications and they'd had to intubate him and stabilise him at the scene before transferring him. I was sat in Preston's A&E resus and they wheeled George in on a spinal board. I just sat there, a few metres away from him, not daring to go near him or listen to what they were saying because it would just confirm what I already knew- that my first born son was no longer really here.
They scanned George's head - the consultant relayed the results to us - I can't really remember what he said, but I think George had 4 separate injuries, any one of which I knew he could die from. Until I told my husband this, he never realised just how serious George's situation was.
George went to theatre so that they could try and monitor the pressure inside his head; they had to remove part of his skull to try and remove the pressure inside his head - we'd have consented to anything just to try and save him. I was 19 weeks pregnant at the time, nauseous and exhausted - I kept falling asleep, then waking and having to relive the nightmare again and again.
When stable enough, George was transferred to Manchester Children's Hospital ICU - we followed behind in a police car, driven by our wonderful family liaison officer. He must have no sooner got into bed after spending several hours at Preston with us, that he got called out again to drive us to Manchester, where he stayed for most of the following day to support us.
Every time someone updated us, the news was worse, until that final, inevitable conversation to tell us that George was brain dead. From hearing his scan results at Preston, my husband and I had talked about donating George's organs. I was worried my husband would refuse - he always said he hated the thought of post mortems, so I thought he may feel the same about organ donation. He'd remembered a conversation George and I had had whilst watching a medical programme on TV where they were performing an organ transplant - George couldn't understand why people wouldn't donate their organs.
Thankfully, my husband didn't refuse, and something wonderful was able to come out of this awful tragedy. We met 2 wonderful transplant co-ordinators - Lee & Lisa- who talked us through the process; I never felt rushed or forced to do anything I didn't want. They promised me they'd take good care of George during his organ retrieval and afterwards. My brother in law went to 'Gap' in Manchester to get George some new clothes to be dressed in afterwards - I didn't want him laying in the hospital mortuary in a shroud or a pair of hospital PJ's - he'd always been such a trendy boy !
The hardest things were telling George's brothers Henry, who was 8 at the time, & Max, then aged 3 that their big brother was going to die. It was the only time I've seen Henry cry about George's accident - I just wished I could have done something to make it easier for him and protect him from this trauma. And saying goodbye to George. He was moved to a side room. My husband, myself and George's brothers went into him. I remember holding and stroking his hand and there being no response at all - just like someone who's had a dense stroke.
Walking out into the Manchester sunshine to be driven home, knowing I'd never see or hear my son again in this lifetime, there aren't words to describe it. Only 10 days prior to his accident we'd all been in London celebrating his 10th birthday - we'd had lunch at Gordon Ramsay's Boxwood Cafe restaurant (George's choice!) and he'd spent his birthday money in the Apple shop on Regent Street on an IPod Touch; the photo of him is from the Ferrari shop next door on his birthday.
The morning after, my husband took a call from the transplant co-ordinator. He came upstairs sobbing and all I could think was that they hadn't been able to use any of George's organs - all this pain and suffering for nothing. Quite the contrary - the transplant co-ordinator said George's organs were beautiful and gave us brief details of who had received what. I cried what I can only describe as tears of joy - I was so proud of what my son had helped make possible. I thought of the recipients getting their calls and what must've been going through their and their loved ones' minds.
People say we were brave to make the decision to donate George's organs - we weren't brave at all; we were grateful we were in a position where we could bring some joy out of our situation. There isn't a day goes by when I don't think of my beautiful, clever, kind loving son, but also of the people he's helped - they bring me so much comfort and pride. My letters from the transplant co-ordinators and from one of the recipients and their family are very treasured - I get them out from time to time to read. If anyone else ever finds themselves in a similar situation to us, I'd urge them to donate their loved one's organs - it's decision I'm sure will bring them a great deal of comfort and one that they'll never regret."
Please, think about it, Talk about it, Do something about it.
Sign the Organ Donor Register - in memory of George and all the other wonderful Donor Families that have given the gift of life.
Saturday, 10 July 2010
Kirsty was diagnosed with Cystic Fibrosis at nine months old. It wasn’t until Kirsty was 13 that her condition started to deteriorate. She began having hospital admissions for Intravenous antibiotics which would mean a two week stay. At first this was two to three times a year but as time progressed it became more often and eventually by the age of 16 she was able to administer her IV’s from home.
Kirsty went to university at 18 but ended up becoming extremely ill and at 19 had to drop out. At this time, her Doctor and CF team warned her that if she didn’t stop work and pay attention to her health, she wouldn’t be here in a year’s time. This was a life changing moment and Kirsty gave up work and started focusing on her health. Unfortunately the damage had been done and her lung function had dropped to 35% - just a third of a normal lung capacity of someone else her age.
In February 2008, Kirsty suffered a pneumothorax (collapsed lung). Kirsty had a further two collapses and it was around this point that transplant was becoming a reality. Following the pneumothoraces, her lung function was now sitting at just 25% and Kirsty was told that if her lungs continued to collapse there would be very little the doctors could do for her; her only hope was to get onto the transplant list.
Kirsty’s transplant assessment was done at Freeman’s Hospital, Newcastle, and took place in February 2009. After three days of rigorous tests Kirsty was told that she was an appropriate candidate for transplant, and put on the active waiting list.
Life waiting for transplant wasn’t easy but Kirsty took every day as a gift and pushed herself to live, studying hairdressing in Coatbridge College where she was awarded an A. During her attendance at College Kirsty required 24hr oxygen, a non invasive ventilator, four nebulisers a day, three sessions of physio and around 60 pills a day.
Kirsty waited for eight months but then in November 2009, she got the call from the Transplant Co-ordinator at Freeman’s Hospital to let her know that they had some suitable lungs. Kirsty’s operation took seven hours and she woke up some ten hours later. Exactly three weeks after her transplant, Kirsty was strong enough to go home and says she hasn’t looked back since.
Kirsty is a vibrant and headstrong lady, with a love of dancing and glamour, and a fiery attitude towards life and its obstacles. Kirsty simply says that she always wanted to be busy and not let CF get in the way of her life.
Welcome aboard Kirsty - we look forward to working with her and know she will be a great asset to the team.
You could be someones hero, sign up to the Organ Donor Register now.
Friday, 9 July 2010
Molly received a multi-organ transplant (small bowel, liver and pancreas) at the age of 16.
"When I was just 6 months old I was suddenly taken ill and it was discovered that the majority of my small intestines had telescoped in on themselves and died due to restricted blood supply. After surgery to remove the affected bowel I was only left with 30cm of small intestine, and as a result I was put onto intravenous feeding, called TPN (total parental nutrition), administered through a central line leading directly into my heart. The TPN I received contained all the nutrients I needed, so I didn’t eat anything at all by mouth. As I grew up I easily adapted to living like this as it was all I had ever known. And as my TPN only had to run overnight I could attend school during the day, and in most other respects led a ‘normal life’. My health was good, and I only occasionally had to miss school for hospital appointments.
However, when I was 14 my family and friends began to notice I was jaundiced, and over the following months this became more obvious. I also became very lethargic and regularly suffered from severe nosebleeds. After tests at different hospitals it was discovered that I was suffering from TPN related liver disease. TPN often causes liver disease in babies and toddlers, but it was very unusual for it to cause problems in someone who had been on TPN as long as I had. The only chance I had was a multi-organ transplant (small bowel, liver and pancreas). After a two week transplant assessment at Birmingham Children’s Hospital I was put on the transplant list, just before my 16th birthday.
Back at home waiting for a transplant, my health deteriorated further. After 7 and a half weeks waiting I attended a clinic where I was told that there was a national shortage of donors, so I could be in for a long wait. Just a couple of days later the call I had been waiting for came. My dad drove us to the hospital that night and then at 8am on Sunday 19th November I went into theatre for my transplant. I was in theatre for 12 hours, in intensive care for 5 days, and in hospital for 12 weeks. The 12 weeks I spent in hospital weren’t straightforward as different complications meant I had to return to theatre more than 10 times. But eventually in February 2007 I returned home.
Since I returned home my health has continued to improve. In the 2 years since my transplant I’ve experienced no rejection. I returned to school full-time 9 months after my transplant and most of my new friends have no idea I’ve been ill. My medications have reduced from 14 to just 5. After my transplant my feed was changed from TPN (which went straight into my heart) to enteral feed (which goes into my stomach and digestive system), as I now have enough small bowel to absorb nutrients. Since I came home from hospital I’ve learnt to eat and gradually built up my eating and decreased my enteral feeds, until my eating got to a ‘normal’ level and I could stop the enteral feeds completely.
I feel like my transplant has given me a future as I know without it I wouldn’t be here now. My transplant has enabled me to do so much and last month I went on a school trip to Japan, which would never have been possible before. I’m eternally grateful to my donor and her family."
Thursday, 8 July 2010
A day in the life of a Donor Transplant Co-ordinator
I work primarily in one large Critical Care Unit and am responsible for providing professional support to the families of potential organ donors and to my medical and nursing colleagues. The aims of the role are to ensure the identification and referral of all potential donors and a skilled professional approach to all families where the option of donation is possible. Every day has been different since taking up the post.
07:45: I arrive on the unit and liaise with the nurse-in-charge regarding any potential patients. On this day I am informed about a patient’s deterioration overnight and who is now presenting with fixed, dilated pupils with no further planned neurosurgical input. The nurse explains that the family is not present but her brothers and sisters are expected at the unit midmorning – they have been informed overnight about their sister’s deterioration. The patient is divorced with two young children and her ex-husband has been in touch but is not planning to visit. I take the opportunity to review the notes and await consultant review of the patient. At this time I also inform my DTC colleague on call of the potential donor. I defer any planned desk-work until another day.
11:00: I join the ward round, where it is decided that the patient fulfills the criteria for brain stem testing and that tests will be carried out this afternoon. The consultant is happy that we speak to the family together regarding the tests. The nurse asks for advice about patient preparation and we discuss routine blood tests and the equipment required for testing. At this point I also suggest contacting the NHS Organ Donor Register, which the nurse does, and we discover the patient has recently registered when changing her GP.
12:00: The family arrives and the nurse gives a brief update on the patient’s condition and introduces myself as a specialist nurse. Following introductions, I prepare the counseling room and the consultant. I and the patient’s nurse begin the process of reinforcing the prognosis and introducing the subject of the proposed tests. The family is understandably upset but appears to grasp the gravity of the situation and the implications of the brain stem tests. The consultant takes his leave, having given a time for the proposed tests. I remain with the family and reinforce the information. At this point, they express their concerns about communicating the information to the patient’s ex-husband and their young children, as family relations are strained. I offer to speak to the gentleman over the phone and the family gratefully accepts.
13:00: Telephone communication is difficult and although the husband understands what the outcome will be he does not wish the children to see their mother again in these surroundings. I offer some simple suggestions on breaking the bad news to the children and suggest they may want to send some personal keepsakes to be with their mother. The husband thanks me for taking the time to call and will consider my suggestions. I relay the outcome of the conversation to the family who are relieved at the effort that was made. Time for some lunch, to recharge the batteries.
14:30: The first set of tests is completed and confirms the clinical picture. The consultant and I break the news to the family and state that the next set of tests will be undertaken shortly. The family is distressed and wishes to spend some time at the bedside.
15:30: The second set of tests are done and we again approach the family. I have informed the consultant that the patient is on the register and he plans to use this to direct his conversation. The coroner is informed and raises no objection to donation. The consultant then sensitively explains that the tests have confirmed death and we wait while the family absorbs the information. After a few minutes they then ask what happens next. At this point the consultant explains that organ donation is an option and in our care for these patients we routinely try to ascertain what the patient’s wishes were by accessing the register. He confirms that the patient had recently registered with a wish to donate all her organs. The family is not surprised and says it was in her nature to be a giving person. They wholeheartedly concur with her wishes and want donation to take place. The consultant thanks them for their consideration and offers my services in an explanation of the process. The family listens to the detail and asks specific questions regarding timescale and when the patient’s body can be released home.
16:30: The family return to the bedside and I take the opportunity to contact my DTC colleague on call. She has been awaiting the call and will be on site within half an hour. The family is exhausted and keen to return home to break the news to the patient’s mother. The patient’s sister is the nominated next-of-kin and she takes time to complete the consent form and offers further information for patient assessment. My colleague arrives and I introduce her to the family, explaining her role for the rest of the day.
17:30: The family says their last goodbyes and thanks the staff for our support before taking their leave. As my colleague reviews the patient information I return to the bedside, offer advice on donor management and complete the assessment.
18:30: The patient is registered with UKT and the offering process begins. My colleague continues the process and I go off-duty, reflecting on a sad day, but satisfied that the protocol in place had worked in managing this patient and her family.
A fascinating and detailed account of a day in the life or a Donor Coordinator; why not share this with friends and family to give them more of an insight into what happens behind the scenes?
Wednesday, 7 July 2010
Our next story that we want to share during National Transplant week is that of Oliver Faulkner. This story was written by Ollie's mum, whilst he was waiting for his transplant.
Oliver was born in June 2000. He was born with posterior urethral valves and severe gastro oesophageal reflux, and only 1 of his kidneys functioning. I knew at my 20 week scan that there was going to be some problem with his kidneys but nothing could have prepared us for the traumatic 8 years he was about to suffer.
Posterior urethral valves are an obstruction in the urethra, making Oliver unable to pass urine. All the problems Oliver was suffering contributed to the deterioration of his remaining kidney. He had many operations to try and correct these and to try to stop Ollie vomiting and also increase the size of his bladder to enable him to be catheterized.
After many more operations for feeding tubes and catheters by the time Ollie was five it was evident that he was going to require a kidney transplant. We were referred to the Evelina Children’s Hospital and the team did everything in their power to keep his kidney functioning but unfortunately his stomach and gut deteriorated so badly that they were left with no other choice but to remove his only kidney. This left Oliver without any kidneys, consequently he is now on haemodialysis, which started at four days a week but had to be increased to six to keep him stable. Oliver was listed for a transplant in March 2008 and has now been waiting for 11 months.
Ollie has such complex medical needs which he accepts with such bravery. Last year, after a six month stay in hospital when his gastrostomy had to be removed because of infection, his gut and bowel problems took over. It was an uphill battle and the decision had to be made to stop feeding Ollie and he was started on TPN – total parenteral nutrition. This is an intravenous feed given through a Hickman line placed through one of the large neck veins straight to the heart.
So this is Oliver’s life at the moment, he has to be at the Evelina on dialysis every day, except Sundays, he is on TPN twenty four hours a day without any breaks. This means that when he goes out, to the park etc., he has to carry a heavy backpack with his pumps in it. He is on twenty medications a day, one of which he has to have two hourly, day and night to keep his blood sugars stable. Oliver, of course, cannot go to school and receives all his education at the hospital. As you can imagine, after reading this, our lives have not been easy. Ollie is such a wonderful boy, he accepts every new procedure with fortitude and bravery, which we can only wonder at. He is a delight and an inspiration to us all. He desperately needs, and deserves, a kidney transplant to give him a better quality of life.
Gorgeous little Oliver ran out of time on Tuesday 6 October 2009. He fought hard for two years but sadly that life-saving call never came.
Oliver's Mum, Lucy, is supporting us during National Transplant Week appealing for more people to sign the Organ Donor Register, read an interview with her, here.
You can make a difference to people like Oliver. Over 10,000 people across the UK currently need an organ transplant, 3 people die everyday because that transplant didn't come in time.
Think about it, Talk about it and do something about it by signing the Organ Donor Register.
Tuesday, 6 July 2010
"I was diagnosed with Cystic Fibrosis (CF) when I was 2 years old. There was no history of CF in our family and my parents knew absolutely nothing about it. It must have been so difficult for them to be thrust into the scary world of hospital appointments, survival statistics, nebulisers, physiotherapy and the million other aspects that make up having a daughter with CF.
During my childhood I remained fairly well. My mum had got me into a good routine with all my treatments right from the beginning and explained how important it was to do everything to keep myself well. By the time I reached my teenage years I had started to feel the bodily effects of my CF. I would find myself becoming breathless quite often but being fiercely private I always managed to hide my symptoms from my peers.
I gained 10 GCSE’s and moved on to Sixth Form College but was really starting to struggle. I would spend my free periods at home, get lifts to and from college whenever possible and arrived early to class so that I could catch my breath before my friends showed up. Climbing the stairs at college was a killer and despite only living 10 minutes away the walk home would regularly see me gasping for breath and having to make several stops on the way. I would be speechless by the time I got in and barely able to breathe.
Things came to a head on December 15th 2006. I was having a particularly bad time health wise and had been forced to take some time off work, it was my first day back and I was determined not to let them down.
As I started walking I knew things weren’t right. I collapsed en route; it was as though my lungs had completely shut down. I was driven to hospital, placed on oxygen and given intravenous drugs to stabilise my condition. It was a very scary time for me as I had never felt so weak, and out of control before. I felt like I was trapped in a body that wasn’t mine, my lung function had crashed to 23% where it has remained ever since. I returned home after two weeks but my lung function did not improve. I instinctively knew that life wouldn’t return to normal, I began using oxygen 24/7 and a wheelchair to go out and about.
I was placed on the active transplant list on the 9th July 2007 and have now been waiting over two years. I had one false alarm back in March '08 but unfortunately the lungs weren’t good enough to use.
Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold.
I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day."
Thank you for sharing your story and for your continued work for Live Life Then Give Life Victoria, we all hope that special phone call isn't too far away.
Monday, 5 July 2010
First up is one of our supporters Paul Kirsop; he shares his story in his own words in the hope it will encourage more people to sign up to the Organ Donor Register.
I am 32 years old, I live with my partner Ruth and two daughters, Jennifer aged 6 and Emma aged 5. I was 27 when I was diagnosed with C.O.P.D, which resulted in me requiring a double lung transplant.
In January 2010, I received my third and final call. I just had a feeling about this one, I knew this was it. At this point I had been waiting around 20 months for a donor, I was on oxygen pretty much 24 hours a day and my lung function had decreased to 17%. I was unable to do things for myself, even getting from one room to another was exhausting. Life had turned into a day-to-day struggle. My daughters kept me going and gave me hope as I found myself saying to them “WHEN Daddy gets better”. I dreamed of running around the garden with my girls and spinning them round like dads do, having a good game of snooker and even putting my own socks on!
The day of my call I was at home on my own; Ruth and the girls were having a day out. I was playing on my playstation when my phone rang. I made my calls, got my bag together and waited for my brother, Stephen to take me to the Freeman Hospital. When I look back now it all seems so fast.
Upon arrival at the Freeman Hospital, I was informed it would be 4-5 hours before we would find out if it was all to go ahead. As I waited for Ruth and the girls to arrive to say my goodbyes I had this sure feeling this really was it. Someone had given me a second chance. It was the most emotional time of my life saying goodbye to my girls, and then having to watch them walking down the corridor wondering if it would be the last time I see them.
Shortly after this I was prepped for theatre. And around 10:30 pm I was told it was definitely happening and was in theatre for 12:30 am. Seven hours later I was out of theatre and in I.C.U. I woke up two days later; I remember my coordinator telling me I’ve made it through the other side and a huge sense of relief surrounded me.
On the third day I was up on my feet doing exercises, on the fourth day I was off the ventilator and out of I.C.U. It was a new, wonderful sensation; I was actually breathing on my own. It was an amazing feeling to be breathing pain free, what I’d be waiting for, for so long. It has given me an altogether different meaning of the word appreciation as words cannot describe how thankful I am to my donor and donor’s family. They have not just given me my life back but Jenny and Emma a Daddy back, Ruth her partner back and a chance for me to watch my two little girls grow up.
Ten days after my transplant it was my 32nd birthday, it was the first time I got to see Ruth, Jennifer and Emma since I said my goodbyes for theatre. The nurses had secretly arranged a little party; I had been told children weren’t allowed to visit so it was a lovely surprise and a great boost for me. Two weeks later I was home; I had made an amazing recovery.
It was great being home and having a new beginning but at the same time I was extremely nervous without my lifeline, having to take nebulisers every few hours and oxygen tubes following me around. I had the support of my oxygen for so long, it was as if I had been set free. It did not take me long to get used to it though and was soon able to start living my life again. I had been given a second chance and plan to make the most of it.
On the 26th of May 2010 I was already living the dream as I played a great snooker hero of mine, Jimmy White. It was in support of the Bobby Robson cancer foundation, raising £4,700 on the night. It was so surreal for me I could not believe how lucky I’ve been , 4 month previous I couldn’t manage a frame of snooker without exhaustion, now I was playing at ease with one of the greatest and beat him!
This is my story, if it had not been for my donor it may have had a different ending, this is why organ donation is so important. There are many others out there like myself who are still waiting. Hero’s are not just firemen, policemen and surgeons but in every walk of life, anyone could be a hero and save lives. You could be one just by signing the organ donor register. You can do it online and it only takes a minute.
If you want to see the amazing contrast take a quick look at Paul's story from when he was waiting for his transplant here.
Thank you Paul for letting us share your story.
Sunday, 4 July 2010
Mention in on Facebook, tweet about it, put it as your signature at the bottom of your emails just for this week....just a few ways of spreading the word.
2. Have a heart to heart with your loved ones.
How many of us have just never quite found the right time to chat to our families about our wishes? Now is the perfect opportunity; it's National Transplant Week so that's a great conversation starter in itself! Check out NHSBT's website for more info and a Heart to Heart meal pack!
3. Copy and repost this blogpost, or direct your friends this way.
You can help us spread the word and reach more people by doing this, so share away!
4. Make sure you have signed the Organ Donor Register!
Haven't got round to it yet? Click here to sign up right now; it only takes two minutes to pledge to leave behind the most important legacy of all; the Gift of Life.