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Patrick’s story

Patrick's story begins when he starts to feel pain in his right shoulder. After 48 hours he visits hospital, where he ends up staying for 5 months. This is his story.
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Due to the sometimes, unpleasant nature of Necrotising Fasciitis, we have given you the choice as to whether you would like to see the personal pictures that Patrick has kindly shared with us. Please be warned, they are very graphic. View Patrick’s pictures.

My story begins in April 2004. At this time I was 34 and married with 3 children aged 5, 4 and 1 and my wife, Sian was pregnant with our fourth child. I am a doctor and was then working as a senior registrar at the University Hospital of Wales in Cardiff (UK). I was due to qualify as a consultant radiologist in October 2004. We were part way through a building project to extend and improve our house.

I had enjoyed perfect health up until April 2004. On April 27th I noticed a slight pain in my right shoulder. I went into work in Cardiff, during the day a colleague performed an ultrasound examination of my shoulder but he found no abnormality.

Later that afternoon I went to Prince Charles hospital in Merthyr Tydfil where I worked as a consultant for an afternoon a week. After work a colleague asked whether I would like to go for a drink with him however by this stage I was in some considerable pain and instead I took myself along to the A&E department. X rays were taken but again no abnormality was seen.

I didn’t feel well enough to drive home so Sian collected me. At home I took the various painkillers that I had been prescribed, however the pain got progressively worse and at 3am the following morning I called for an emergency ambulance, this time to take me to Neville Hall hospital in Abergavenny.

Further X rays were taken however no diagnosis was made and I was sent home at 7am. I stayed off work on the 28th April . Sian went to work, however on her return at 5pm she saw that I was clearly unwell and that the pain in my shoulder was worse. She took me back to Neville Hall hospital at 6pm.

I remember walking into the A&E department and being taken into the examination cubicles but beyond this I have no recollection of the following month. Remember that this was within 48 hours of first feeling a slight twinge in my shoulder. The doctors in A&E could see I was unwell with a slightly raised temperature and white blood cell count.

They performed blood gas analysis which showed that I was acidotic, this is non-specific finding which, however, indicates a severe systemic illness. A CT scan was organised the same evening and this showed large amounts of air within the muscles and soft tissues around my right shoulder and extending down my right arm and down the right side of my back.

This finding indicated the presence of bacteria feeding on the muscles and soft tissues and producing gas as they destroy the tissue. The diagnosis of necrotising fasciitis was then made. By this stage I was clearly unwell and very confused.

Immediately following the scan I was taken to the operating theatre where surgeons removed large amounts of affected skin, muscle and soft tissue. The affected tissue literally fell apart in their hands. I was taken to the intensive care unit and my condition gradually worsened.

At about 1am Sian was called to come in because my condition was critical. The following days and weeks can only have been a living nightmare for Sian. The consultants explained that I had septic shock due to the necrotising fasciitis. Septic shock is an extremely serious condition in which the cardiovascular system is unable to supply adequate blood and therefore oxygen to vital tissues due to overwhelming infection.

Sian was told there was about a 1% chance of my survival.

As the days passed I developed a condition called multi organ failure in which numerous vital organ systems fail to work adequately. I developed failure of the cardiovascular system, respiratory system, hepatic system as well as the renal system. Renal failure meant that I needed haemofiltration for approximately 6 weeks. I also rapidly developed coagulation failure. This means that the platelets and clotting factors in the patient’s blood get used up and there are none left to stop bleeding.

I therefore developed torrential bleeding from my wounds. I required transfusion of over 80 units of blood to replace these losses. On several occasions when death appeared imminent, the priest was called to administer last rites. Apart from the necrotising fasciitis, I also had to fight a number of infections acquired in hospital and these included MRSA and also VRE (vancomycin resistant enterococcus).

Sian began to believe that death was inevitable and began to make arrangements as to who would write my obituary. She began to feel that the numerous operations and interventions were pointless and unfair.

Sian somehow managed to carry on looking after our 3 young children and to spend a great deal of time by my bedside. She was also left to struggle with the project management of the building works at our house. This was possible because of the excellent support of our friends. Gradually as the weeks passed my condition improved.

The treatments I had received had however taken their toll. I was left with a massive wound over my back in which the surgeons had removed all of the tissue to my bare ribs. During my critical period I was treated with huge doses of drugs called ionotropes. These powerful drugs have many effects but amongst these is the redirection of blood away from the peripheries (arms and legs) to supply blood to the heart and brain and to maintain blood pressure.

Because these drugs were used in such massive doses over a prolonged period there was severe blackening of my arms and legs. At one point it was felt that I might loose all 4 limbs. Again miraculously, the limbs recovered with the exception of my toes which all remained black and dead. The appearance and type of damage is in fact identical to that seen in frostbite.

After 8 weeks at Neville Hall hospital my condition had stabilised and I was now out of danger. I should say at this stage that the standard of care I received at this hospital was second to none. The skill and dedication of the ITU and surgical staff are no doubt the cause of my survival. I owe my life to them. It was however time to move on.

I needed to undergo skin grafting to the huge wound over my back and the back of my arm. I was therefore transferred to the regional centre for burns and plastic surgery at Morriston hospital in Swansea on 8th June.

At Morriston hospital I underwent numerous operations to clean the wound, remove further areas of dead tissue and the majority of my scapula (shoulder blade). I also underwent amputation of all of my toes and parts of some of the metatarsals. Eventually I was considered fit enough to attempt split skin grafting. This is an operation in which half of the thickness of the skin from a donor site (in my case my thighs), is removed and following treatment is applied to the wound.

Amazingly there was excellent “take” of the graft to my arm and back with only a few unhealed areas. There also came the task of getting me to sit and to stand. It is amazing how quickly the body becomes weak after periods in bed especially when ill. It was a massive effort to relearn to stand and subsequently to walk along with the expert and professional help of the physiotherapists at Morriston Hospital.

I was eventually discharged home on September 26th after almost 5 months in hospital. District nurses came to dress my wounds on a daily basis. On 5th October, Sian gave birth to a beautiful baby boy, Samuel Patrick Fielding 8lb 10.5oz. I was present and cut the cord.

My troubles were not however over; I very soon developed a “sinus” which opened over my back. This discharged pus. After several scans and operations it became clear that I had developed septic arthritis of the shoulder joint (That is to say a bacterial infection of the shoulder joint.). The pus was tracking out from the affected joint to the skin surface. I therefore underwent further surgery to wash out the joint. I was also treated with a prolonged course of antibiotics.

I also had a wound under my armpit where the graft had not taken. My plastic surgeon felt that the only way to close this wound was to perform a “flap” procedure. This involved several further operations to take a flap of skin from my back, twist it round and attach it over the wound in my armpit.

This was however not entirely successful as the end of the flap “died” due to poor blood supply. I then needed two further operations to remove the dead flap and replace it with skin graft.

These further operations lasted until February 2005. Since then my wounds have gradually improved and at the time of writing I only have a tiny wound on my left foot that I dress daily. I have started to drive again and over the last 5 weeks, I have been back to work, part time. My main problems are that I do get quite a lot of pain in my feet especially on walking or standing.

For some time I was prescribed methadone as a pain killer and I found it extremely difficult to come off this drug. I also have considerable weakness of my right arm which makes it difficult to perform ultrasound examinations, I am however able to write and I can perform a lot of other work duties including reporting CT, MRI and nuclear medicine studies.

At home I am able to help out with the children although picking up the older ones is difficult! I take the children to swimming lessons, the cinema and to parties. I am also able to do a bit of DIY around the house. Things are by no means perfect, and life will never be the same again but there are still things that I can get pleasure from.

I wanted to post my story to try to give some encouragement to other people who may be going through a similar experience. Perhaps your relative is currently very ill with this condition. I wanted to emphasise that although this can be a deadly condition, even if the patient is very seriously ill, one can recover from the illness and go on to have some quality of life.

The road to recovery is very long, expect setbacks along the way, take each day at a time and try to break down the task of recovery into smaller achievable goals. You are not alone. Although everyone’s experience of this disease is unique to them, there have been other people that have had a similar illness to you and they have gone on to survive and recover. Although it may seem difficult, a sense of humour is a great help in the most difficult of times.

Patrick

Update on my story dated 12th April 2004

It’s now about a year since I posted my story. Since then a couple of things that have happened to me that I feel may have affected and that I feel are worth sharing. The first thing that has happened is that I have realised that the care I was given early on in my illness was not all that I should have been.

Reading through my story again I am struck by the enormous effort many staff made to make my survival possible. I am, and will always remain eternally grateful to those who worked so hard to help me to recovery. Over the last year I have fought (and eventually succeeded) in a claim against my life insurance company to receive payment on a critical illness policy. For those not familiar with these policies, you pay a regular premium as insurance against a variety of serious illnesses and conditions such as heart attacks or cancer. Most would agree that NF is an extremely severe illness and drastically affects quality of life for survivors. However getting the company to recognise this and pay out was a real battle! As part of my research I obtained a copy of my medical records in order to extract information to support my claim.

I was very saddened and disappointed when I reviewed my medical records. It appears that although the treatment was very good after the nature and severity of my condition was appreciated, there were significant delays in diagnosis and inadequacies in my early treatment. Having carefully reviewed all of the documentation I was left with the unfortunate conclusion that there were a number of significant mistakes and delays in my early diagnosis and management and that these led to my condition being more severe than it would otherwise have been.

Amongst the many problems were a failure to perform a basic physical examination including pulse and blood pressure, a failure to perform basic laboratory tests, a doctor ordering an x ray of the shoulder, this being performed and showing gross abnormalities but no one looking at the x ray. My being left on trolley in the accident and emergency department for 5 hours with an extremely low blood pressure, not receiving adequate treatment and not being reviewed by a senior doctor. I subsequently discovered that a doctor had been disciplined for the way they managed my case, although I was never informed of this by the hospital. Finally it became clear that a doctor had after the events gone back and altered the medical records in order to justify their actions.

Needless to say I was very sad and disappointed by all of this. The reason I am sharing this however is that I think that errors in diagnosis and management are common in NF and I suspect that there are many other patients and families who feel aggrieved and question how the condition was not diagnosed and treated earlier. I was in a doubly difficult position because I personally knew many of the staff involved in my care and had friends and colleagues at the hospital. It was therefore a really tough decision to decide to pursue a complaint against the hospital. Certainly it has cost me several friendships. As a doctor and a patient I have now been on both sides of the complaints process and my experience has been a negative one from both perspectives. In my case it took a full 9 months for the hospital to make any response to many of my concerns. I am now seriously considering perusing a case for medical negligence against several of the doctors involved. I do this with a very heavy heart but unfortunately I feel I owe it to my children to at least take further advice as to the likelihood of successfully pursing a claim. I do not think I can give up the possibility of securing quite considerable compensation, not for myself but for the opportunities this could give the children. I thought it was worth sharing this because I think complaints and litigation are a part of many peoples experience of NF and to leave this out would not be telling my full story.

The final thing to share is also sad and rather more personal. Unfortunately Sian and I are in the process of going through a divorce. I now live separately and see the children on the weekends. There were problems in our relationship before my illness however I have no doubt that NF put an immense strain on our family in general and our relationship in particular. Certainly we never reestablished a physical relationship after my illness. It wasn’t just the effects on my body, but also the psychological trauma we had both been through. The illness also brought out stains in relationships amongst the extended family. In the end Sian felt that she no longer wished to continue with the relationship. Given everything that she went through I don’t think I can blame her. Again I only share this because it is an important part of my story and to miss it out would be telling only a part of the story.

Survivors of NF usually have to bear quite significant physical scars and I have been no exception to this. Over the last couple of months, as I have started to meet new people and explore new relationships, the scarring and disability caused by NF have been real hurdles to overcome. I have found however that these hurdles have mainly been in terms of my confidence and that other people have been able to accept me as I am and my body as it is. This has been a real revelation for me and has greatly improved my view of human nature. Genuine people do look through the scars and see the person beneath. Perhaps it is only now that I have come to understand that NF can drastically alter your body but underneath you continue to be the same person.

These last issues are obviously deeply personal. I felt it was important to share them because again I think this sort of issue affects most NF survivors in one way or another.

Patrick

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