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 necrotizing 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 necrotizing
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 necrotizing 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 stabilized
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 emphasize 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 realized 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 recognize 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 wasted 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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