A Family’s story

My brother became critically ill with sepsis just two days after we had spent Christmas Day 2017 together as a family.

His wife  recognised the symptoms of Sepsis and took him to Tameside Hospital A&E where he was admitted into ICU. Later that night he was put on a ventilator as he was struggling to breathe. He was a fit, healthy non-smoker in his 40s who ran and played football regularly, and the father to two children, one of whom was only 6 at the time. Over the next two days, he continued to deteriorate as his lungs were not functioning, and ECMO was the only treatment that could be given. We feel incredibly fortunate that the A&E Consultant at Tameside recommended my brother for ECMO, and that Wythenshawe ECMO unit had a bed available.

On Saturday 30 December 2017, the ECMO Team came from Wythenshawe Hospital and operated to put him on the ECMO.  He was taken by ambulance to the Cardiothoracic Critical Care Unit, CCU at Wythenshawe Hospital. After only a short time on ECMO in January 2018, the ECMO team undertook a trial taking him off ECMO which was successful and this was just the start of his road to recovery as his sedation was gradually reduced. 14 Days after he came off ECMO, a trial was done to take him off the ventilator. We were advised that his kidneys would be the last thing to recover, and he continued to need dialysis. They were the last part of his recovery in ICU and CCU, and beyond his release from hospital.

Every day we visited him in CTCCU and Acute Intensive Care talking to him, playing the radio with his favourite football team matches and music whilst he was unconscious and sedated. It was very hard not knowing when he would start to wake up and how he would be. ECMO can cause bleeds on the brain and scans showed he had suffered bleeds, yet these later resolved. Sarah from the ECMO family support group helped me and our Mum and Dad by providing information from her own experience, and reassurance. She also told us that it would be a rollercoaster and that some days would bring forward steps and others would be much more difficult as happened, such as when he was affected by new infections. Sarah’s advice to me to keep a daily timeline record was very helpful. Reviewing the timeline helped us to look back and see the positives when we, and he had difficult days.We later gave the timeline to my brother, as he wanted to look back at what happened during his illness.

A month after he was placed in an induced coma he fully came around after gradually waking. That was such a wonderful happy day for our family.  Therapy started immediately and relearning how to swallow, speak, and to move took tremendous effort on his part and was physically exhausting. He began physiotherapy to strengthen the muscles that had weakened after being on a ventilator for around 6 weeks.
He was supported by speech and language therapists, physiotherapists, nutritionists and nurses and doctors who helped him to recover. In February, he moved to a rehabilitation ward and was discharged home on 23 February 2018 walking with a stick for support.
Thanks to his strength and determination together with the inspiration to recover for his wife and children, and with the support of his family he has made an excellent recovery in health, returning to work as a senior technical analyst in clinical health policy in September 2018. He has worked hard to develop his fitness, regularly attending the gym, such that on Boxing Day 2018 (a year after being critically ill) he went out for a run.

I wanted to share our family’s story of hope as Wythenshawe ECMO Family Support Group was invaluable. The support and advice I and our Mum and Dad received was such a comfort and provided reassurance when we were in a frightening and traumatic critical illness situation. I will never forget finding the ECMO family website and reading the family stories the night the ECMO team operated on my brother. We felt hope for the first time when we read the stories on this website, and we are sharing our story to let people know that a good recovery is possible.
I am now a blood donor after seeing my lovely brother receive several blood transfusions, and from seeing Sam’s pledge a pint video that Sarah shared with me. I hope if you are reading this our story will help you. Please remember everyone’s recovery develops at a different pace so don’t be disheartened; the best advice we were given by a Consultant in ICU was ‘Remain Hopeful’.
We are so thankful to the wonderful NHS staff for the care and commitment they gave to helping my brother including Tameside ICU, and the ECMO team, CCU and ICU at Wythenshawe, and the ECMO family support group (with special thanks to Sarah).

Naomi’s story, told by her Mum, Ruth

On the 13^th October 2014 my 17 year old daughter had an epileptic seizure in the bath and I found her submerged and unresponsive. I managed to resuscitate her and she was rushed to our local hospital, which we are fortunate enough to have on our doorstep, Salford Royal Hospital, where after several hours in A+E she was placed in an induced coma and taken to the Critical Care Unit (CCU).

She spent 10 very long days at Salford Royal where she showed little improvement and when she did it was rapidly followed by a deterioration. After the first 7 days in CCU the doctors had mentioned the possibility of ECMO which would mean a move to Wythenshawe Hospital. This was only mentioned almost in passing and we weren’t keen for Naomi to move hospitals as Salford was so convenient for us and our extended family. By the 9^th day in CCU, 22^nd October, Naomi was really struggling and it was distressing to see. Her lungs were unable to cope with trying to repair themselves from the damage from the bath water under the pressure of the ventilator.

At around 11pm on the 22^nd October, we received a call from CCU. We were staying at the hospital in relatives room not far from the ward. We were asked to come to the ward to discuss Naomi going to Wythenshawe for ECMO. The doctors explained why this needed to happen and that they had already informed the ECMO team who were on the way to Salford as it was felt it couldn’t wait until the morning. Around 90 minutes later Naomi was in theatre being prepared with the ECMO for the journey to Wythenshawe which happened around 3am.

My Husband and I are well aware that had Naomi not gone to Wythenshawe that night we would be telling a very different story.

Once Naomi had moved we started to do some research regarding ECMO and realised that despite us initially thinking it wasn’t very convenient for us, we were actually incredibly lucky to have such a facility so close to home. Given the small number of beds across the country we were unbelievably grateful.

Visiting Naomi on ECMO we never ceased to be astounded at how this machine had given our daughter the best chance possible. Over the next 8 days with the incredible care of the staff and the wonder that is ECMO Naomi improved and was able to move back to Salford on the 1^st November. She spent another 2 weeks on CCU coming off the ventilator due to problems with her epilepsy, another week on the rehab ward and a week at home.

One month after coming off the ECMO Naomi was back at school.

Naomi celebrated her 18^th Birthday in March with most of her close family (28 of us), all of whom had visited Naomi as some point during her time in hospital. Then and even now, nearly 12 months on, all comment on how she is a walking miracle like nothing ever happened.

My husband and I keep the picture of Naomi on the ECMO machine on our phones. 1. To make us remember that things can always be worse and 2. To show anybody who will listen about the miracle that is ECMO and the NHS.

Peter’s Story, told by his daughter, Charley

Simple surgery to remove a rare cancer of the prostate. It would be life changing for Dad, but at least he would have his life. After the first 24 hours things were looking good and the surgeons said he would be out by the weekend. He was in Birmingham hospital and when I phoned the Intensive care unit to check he had a comfortable night, I instantly knew there was something wrong and travelled the 200 miles to be with my mum by his side. The next 12 hours proved to be life changing and his condition dramatically deteriorated.

Birmingham, knowing that there was nothing more that they could do to save his life phoned with urgency to Leicester to suggest dad for ECMO. Leicester were at maximum capacity for ECMO patients and even if they had space, they would be unlikely to take him due to his age. At 66, dad was 1 year over the age that ECMO is deemed likely to be successful. But dad wasn’t a normal 66 year old, fit and healthy, loved nothing more than a game of football with the grandchildren. Luckily for us, the next call was to Manchester and they had no hesitation in accepting his case.

Immediately, a team was despatched and travelled from Manchester to Birmingham. On arrival, the 6 strong team explained the risk involved, which was high but in the grand scheme of things, we had no other option. The surgery took place in Birmingham and after 45 minutes, we were called down to say goodbye. Dad travelled from Birmingham to Manchester, ECMO attached on blue lights at 12 midnight. My sister, Mum and I followed the ambulance. On arrival we were instantly put at ease by the amazing staff in Manchester. The ECMO team had already called ahead and a family meeting room was made available for the 3 of us to rest until morning. My Mum and I top and tailed on a hospital bed and my sister curled up on a small sofa. The following morning, we woke to tea and toast.

Dad was on ECMO for 5 days, which is a very short time, we were told 2 weeks was likely but like I said, my Dad isn’t normal.

Today we have returned to Wythenshawe hospital and the ECMO team for our catch up. It wasn’t easy, Dad had no recollection of his time there and it brought back so many difficult memories for myself and my Mum. Initially, we were shown to the family room…..last time we were there the 3 of us camped overnight top and tail.

If you are reading this you have either been through ECMO or are going through it. If you are still on the journey all I can say is you are in the safest hands in Manchester. We will never forget how the smallest things made the biggest difference. 

Chris’s Story

My story began on a family holiday to Spain in October 2014. I began to feel ill a couple of days before the end of the holiday but put it down to a chill or a little too much sun. I managed to see the rest of the holiday out but remember little about the journey home. The following day I attended A&E at my local hospital where I was quickly diagnosed with double pneumonia caused by the legionella bacteria. I recall waiting in A&E but this is the last thing I remember for more than 2 weeks. The next part of my story has been told to me by my partner and family. I was immediately admitted hospital but my condition continued to deteriorate. I was transferred to the Critical Care Unit and then soon after placed on a ventilator.

The following day the doctors began speaking to the ECMO unit at Wythenshawe Hospital who offered their advice to try and improve my condition. However I continued to deteriorate and my condition was such that I was accepted for ECMO treatment and a team from Wythenshawe arrived to carry out the surgery. The operation went well and I was then taken back to Wythenshawe with them. I was on ECMO for 8 days. Following the ECMO treatment I spent a further few days at Wythenshawe in Acute Intensive Care.  I remember little about this period as although the sedation had ceased I drifted in and out of consciousness. Eventually I was transferred back to West Yorkshire to Dewsbury Hospital on 18 November. At this point I was mostly awake but unable to speak as I had a tracheostomy. I found this very frustrating particularly as I couldn’t write things down to communicate due to my hands being so weak.

Throughout my stay in hospital both at Wythenshawe and the early in my stay at Dewsbury I had many strange dreams and nightmares that I was convinced were real. I would frequently tell my partner that I remembered certain events only to be told that they never happened

I remained in Dewsbury until December when I was allowed home. I was still very weak and reliant on walking aids to get about. However, my condition improved rapidly after this, and I have been able to achieve all the goals I set myself whilst lying in hospital. I was determined to be able to attend the first match of the season of my rugby league team, Castleford Tigers and to be able to play 18 holes of golf by the end of February, both of which I achieved. I know this wouldn’t have been possible without the work of the ECMO Team at Wythenshawe who undoubtedly saved my life. My partner was told that I will be invited back to the unit where I will be able to meet some of the team and see the diary that was kept recording my treatment. My partner continued to keep a diary whilst I was in Dewsbury, which was great to fill in the gaps and I can’t wait to get to Wythenshawe to see the diary and to personally thank the members of the ECMO team for saving my life.

Jane’s Story

When I became ill I was on a caravan holiday with my Mum in Woolacombe Devon. Mum was up before me; this was unusual and she found me in bed swollen and red and couldn’t stir me fully. I remember I couldn’t get warm in bed the night before. As the doctor wouldn’t come to visit me, Mum struggled to take me to the local doctors. From here the doctor called an ambulance as I was struggling to breathe and I was taken to North Devon District Hospital in Barnstaple where I was put on life support, suffering from viral pneumonia.

I cannot remember anything after this, but through my relatives and diaries kept, which is brilliant idea, I am able to tell you from this point. Within 2 days life support wasn’t working enough, my lungs were at 88%, and my organs were failing due to lack of oxygen. ECMO was mentioned but there were no spare beds. A man who needed a bed before me improved, so thankfully I climbed to the top of the queue although there were no ECMO machines available. All my relatives were under extreme stress as without one I would not survive. Within the hour a bed became available in Manchester. Specialists travelled later that evening from Manchester by RAF helicopter to operate and put me on ECMO.

I was then flown to Manchester UHSM and was in Manchester for 3 weeks. During this time I was sedated in a coma. I was moved to back to Rotherham ICU where I was taken off sedation. I opened my eyes 3 days later and was moved to HDU followed by isolation for 3 weeks. I left Rotherham Hospital on 13th June 2014.

During time whilst under sedation I had dreams and nightmares which were very real to me, so real I told my family lots of stories which I believed.

The ECMO team couldn’t have been more supportive and continue to do so even now. I am extremely grateful as without them I wouldn’t be he