|
 Nevertheless,
he went. He only booked his insurance the day before he went – how grateful
we were of this later on.
As a parent, I am always anxious when either of
my children venture abroad, but more so this time as I could physically and
emotionally feel Alex’s reluctance. I asked him to keep in regular touch.
Little did I know how this trip would unfold.
Very late on Monday 26th March he
rang to say that he had arrived, it was nearly midnight. The host family
had – as he said – cooked him a veritable feast in true Italian style, so he
could not help but to stay up late and eat the lovely food. At the end of
the next day he rang again to say that he couldn’t stop vomiting and that he
felt generally unwell but nothing too specific. I told him that it was
probably because he had eaten so late and as he had been travelling all the
previous day he would be very tired. Therefore, the combination was bound
to have had an affect on his general well being. I asked him to ring me
with an update the following day. I would never, ever have associated the
beginning of this terrible period of illness for him with heart problems –
it simply never entered my thoughts.
On Wednesday 28th March he was
visiting Mount Etna. On his return the mother of the host family – Adriana
– spoke to me. Alex’s grasp of the Italian language was minimal and she
wanted me to relay her concerns to him. She told me that he was reluctant
to take an anti-nausea table; she believed that he did not understand her
and was very concerned as he looked very ill and was still vomiting. I
spoke to Alex and he told me that he understood Adriana but that he simply
could not swallow anything; he could not even have a glass of water without
vomiting. Additionally, he was very breathless and found it very hard to
speak. He said he was going to one of the student’s houses to have a ‘pizza
night’ – he did go but later told me he asked Angelo (Adriana’s partner) to
pick him up very early in the evening as a) he couldn’t eat and b) he just
wanted to be in bed he felt so poorly.
I felt helpless, as I was miles away, but still
believed that travelling all day on the Monday and eating so late had
affected him. As a child he suffered badly from asthma, he still succumbed
to it when, as a family, we visited major cities, so we were always well
prepared with his inhaler. I presumed that because he felt poorly and he
had ventured up to Mount Etna the altitude had instigated the asthma. I
advised him to try his best to take the anti nausea tablet but to desist
from following the college’s itinerary the next day and simply to lie in bed
and try to rest and recuperate. I repeated my advice to Adriana and asked
her to keep in touch with me. I also asked Alex if he’d used his inhaler
and he simply said to me “This is not asthma”.
At about 5.30am on Thursday 29th
March our home telephone rang. My partner answered it and passed the
handset to me as she could just about make out that Alex was asking for me.
At the other end I scarcely recognised Alex’s voice. He could barely utter
complete words, let alone a coherent sentence through his breathlessness. I
asked him to let me speak to Adriana and not to strain himself. As soon as
she spoke to me, she advised that I should get a flight over to Sicily as
soon as I possibly could as she felt the situation was very dire indeed.
Although I felt very scared and shocked, I tried to calm the situation down
by asking for details. She informed me that they had called their doctor to
visit at 8.00am. I was aware that there was only one adult working in the
family and was also consciously aware that GP visits have to be paid for in
Italy; they are certainly not cheap. I was also mindful that his visit was
before regular office hours, so they were obviously going to have to pay
more for this visit. I felt doubly helpless. My son could not talk,
breathe and felt dreadful; the host family were also feeling awful,
responsible (and whilst I can understand this I did stress that they were
not responsible for his health at all) and helpless, as Alex’s Italian was
so limited. Equally, although the student who was Alex’s counterpart (Ugo)
had a rudiment understanding of the English language, this did not cover
talking with ease about medical conditions.
Back in the UK, my whole family was in angst
waiting for 8.00am to come. In effect this deadline never arrived as
Adriana rang me half an hour later from the original ‘phone call at 5.30am
to say that Alex was grey, vomiting, on the floor in the bathroom and they
were taking him to the Accident and Emergency in their hometown of Acireale
San Antonio; they felt unable to wait for the GP to call, it was simply too
long to wait – how grateful I am for their decision. I sat waiting
anxiously for their updates unable to do anything at all, except let my
imagination run riot. My daughter was online searching for flights and I
was trying to diagnose Alex with any illness I could think of: - severe
asthma, really bad indigestion, I even thought of a deep vein thrombosis
because of the flight.
My partner went to work and asked me to ring
with updates. At this point two of the tutors from the English college,
Valentin and Susan were with Alex. About two hours later Alex was diagnosed
with rib strain – probably due to his incessant vomiting and was advised to
go home with anti-nausea medication and pain relief. Valentin rang to
inform me of the latest diagnosis. My daughter, Francesca, then spoke to
Alex ribbing him incessantly, teasing him and mocking him saying “Trust you,
all this fuss for nothing, you’ll do anything for attention”. She carried
on the conversation with her brother, but when the conversation finished she
said that Alex finished off his conversation with “Francesca, it’s more than
just rib strain, there’s something seriously wrong with me”. My partner
felt comfortable to remain at work with this update.
However, call it intuition but it seriously
unnerved me when Francesca related this story to me; I was worried again,
but could only rely on the medics in Sicily and was now seriously
considering whether or not to go to Sicily and be with my son, regardless of
the illness that he may or may not have. At this point my partner made a
quick visit home to comfort both myself and my daughter but she went back
again when we thought Alex was leaving Accident and Emergency – little did
we know that she was very soon to come home again.
Home again she was, within an hour, our whole
lives changed. This is when the first of a number of synchronicities
occurred. A cardiologist at the hospital just happened to be visiting the
laboratory where bloods were being tested. He picked up one of Alex’s tests
and asked the lab technicians “When is this patient coming to my ward?” The
lab technician responded “He’s not, it’s just a young English student who is
being sent back home as he was diagnosed with rib strain”. The cardiologist
with great concern said “Oh no he is not. I believe the young man is having
a heart attack! Get a porter to get him immediately and bring him back into
the hospital”.
I never knew the name of this cardiologist, but
later I wrote him a long ‘thank you’ letter because had it not been for his
observation, Alex would have gone back to the host family’s apartment and
without doubt died, he was in a critical condition. The porters duly rushed
to the exit to bring Alex back. The cardiologist did a quick assessment and
realised that Alex’s situation was indeed very critical and decided to
transfer him by ambulance to Catania, a nearby city that had a hospital that
could accommodate him – Azienda Tomaselli.
At this point I rang Alex on his mobile. He was
able to communicate briefly; the staff later told me that they felt it was
important that he should talk to a member of his family, someone who could
talk to him and calm him. He was very frightened and knew now that
something was seriously wrong. I tried to talk to him and calm him down as
much as possible. I asked him to pass me on to the doctor who was in the
ambulance with him. I asked the doctor how he was doing. He politely said
(in English) “Signora, we need to get him to the specialist hospital as soon
as we can”. I knew this comment would upset Alex more so spoke again to my
son and had a ‘normal’ conversation with him to – again – calm him down
somewhat.
Valentin had had the dreadful job of informing
me of the situation. He did it in a kind and considerate manner; it was not
a role I would have liked to have taken and I thanked him for his calmness
and warmth. I immediately rang my partner who returned from work. My
daughter frantically looked for flights. Alex in the meantime was on the
way to a private hospital that specialised in cardiology and into the
Intensive Care department where on arrival he had two nurses sat by his bed
24/7 for the next four days.
I remember trying to keep calm and busy. I
informed just a handful of people – I left the extended network of family
and friends for my partner to contact at a later time - and tried my best to
think straight about what to pack, what I may need, not knowing what would
happen and how long I needed to stay there. My daughter said she would come
with me. She rang her tutor at university and her place of part-time work
to inform them about what was happening. They were both brilliant, as were
my employers. My partner is self-employed and co-owns her business, but her
colleagues were accommodating too. Close friends and family were supporting
us either emotionally or with offers of money to help pay for the trip.
Alex’s friends’ parents were willing to raise money in whatever manner
should we have needed a vast amount – we really did not know what to expect
as we were told that Alex was in a private hospital. We were overwhelmed by
people’s kindness, concern and support. What was very clear is that there
were waves of love travelling across to Alex. Without all these
machinations, we could not have kept the calm composure that was necessary
for the journey.
Later that evening I rang several times to speak
directly with the consultant at the hospital who was caring for Alex –
Professore Francesco Turcitto. He informed me that Alex had succumbed to
myocarditis which had developed into acute myocarditis with pleurisy. It
appears Alex had been ill with myocarditis since the previous Monday but, as
is understandable, no-one would have thought that he had a problem with his
heart. They were surprised that he had survived the prolonged attack that
he had obviously suffered; that he had survived the trip to Mount Etna but
seemed nonplussed that it was diagnosed easily. This is contrary to the
belief of all GPs and consultants who we have seen back in the UK who inform
us that Alex probably would not have been diagnosed here in the UK and the
outcome would have been less than happy for us. They have all commented
that for Alex to have been struck with myocarditis in Italy was fortunate –
obviously, not fortunate that he was diagnosed with it, but because of the
experience of the medical staff in Italy for this condition, but for other
cardiology ailments too. Yet another synchronicity.
We set off from Liverpool airport on Friday 30th
March very, very early in the morning. We flew to Rome and then to Catania
arriving early morning. It was so surreal sitting next to holiday makers,
exchanging niceties. But how the conversation changed when I informed them
that my trip was to visit my son in intensive care, in an unknown hospital,
in an unknown city – the dialogue took a vast U-turn at this point. It’s
hard to deal with such a paradox, holiday mood and son in intensive care. I
tried to put my co-passengers worried, concerned words away from my head,
but it was useless, that’s all I could think about anyway.
We were met at the airport in Catania by a
multitude of people. I honestly cannot remember who was there to meet us or
what conversations we had. All I knew was that I needed to get to the
hospital as soon as I could. I was told afterwards that the head, tutors
and many of the students of the college that Alex had attended in Sicily for
two days were there. The parents of the exchange student were amongst the
welcoming crowd – and, fortunately for us, the student himself as we had no
idea who anyone else was. Ugo sweetly welcomed us; his parents completely
understood our numbness, inability to engage in any sort of discussion,
disbelief and worry. They gently guided us to the car to transport us to
the hospital and see Alex. We arrived and were ushered into a changing room
where Francesca and I had to change into gowns and ancillary coverings for
shoes etc before going into intensive care. I remember distinctly, the
doctor telling me in a very kind voice that I should not cry so that Alex
would not realise how ill he was. I was beside myself. An overwhelming
feeling of doom came over me with his words, but I also knew that with
Alex’s character, the last thing he needed at this time was a weeping
mother.
When we saw Alex, I have to say I was pleasantly
surprised by his demeanour. Yes, he looked very poorly, yes he was hooked
up to machines and had two intravenous drips in; but I have to say I was
glad to see him alive and I knew instinctively that in time he would recover
– again, call it a mother’s intuition, but I just knew.
Visiting times in intensive care were 12.00 noon
until 1.00pm and then 6.00pm until 7.00pm with only one person by the
bedside each time. As Alex could not speak Italian and as Francesca and I
had flown from the UK, the staff very obligingly let us stay with Alex
together from 12.00 noon until 7.00pm every day. To say that I was pleased
to be with my son was an understatement.
The staff at the hospital were more than
accommodating. They cared, they worried and they loved. Italy is a very
religious country. One senior nurse brought us some blessed bread from the
Cardinal who had been visiting the city, as it was the Easter period. She
had told the Cardinal the story about Alex. She had told him that they had
not had a myocarditis survivor before and never one so young either. She
also told me – once Alex had come out of intensive care – that the staff
truly believed that Alex was going to die. She said all the nurses kept
saying “How sad that his mother has to make this long trip to see a dead
son”. She said she had already thought of funeral directors she would take
me to so that I didn’t have to do any research!
The staff allowed us to use their staff room, as
they knew that not only had we nowhere to go during the day (the hospital
was way out of the centre), but also that we had absolutely no knowledge of
the area. They took us to buy sandwiches as there was not a canteen in the
hospital, they bought drinks for us and treated us like visiting royalty,
even picking us up from where we staying on occasions to make our trip a
little less stressful but also to give the host family a break – they could
not have done any more than they did. This would have probably not happened
in the UK because of professional boundaries. I have to say, however, that
as a parent in this situation I would prefer the boundaries being dropped
and human empathy been shown as it was to us.
In the meantime the host family drove us to the
hospital every day and picked us up. A drive of nearly an hour each way!
Adriana cooked all our evening meals, made sure we had breakfast before we
left and prepared food for Alex as he was not too keen on the hospital
food! They washed our clothes and made sure that we had nothing else to be
concerned about except for Alex’s welfare.
Alex remained in intensive care until Sunday 1st
April (the third anniversary of my father’s death) – this was a happy, happy
day for us. He was then transferred to a high dependency unit for the rest
of his stay. The last two days of his stay was classed as rehabilitation.
Alex had blood tests everyday; he had regular echocardiograms and
electrocardiograms. At one point he also got an infection in his blood
which was treated by antibiotics. At another stage his white blood cells
were perilously high but again, treated quickly, efficiently and with a full
explanation from the consultants.
As a parent I got regular updates from two
consultants on a daily basis. There was no mistaking that I felt so
fortunate to be able to speak Italian – although the staff also said that if
I wanted I could have interpreters for Alex; Alex, however, was quite happy
with my translation skills! Alex was visited at least twice a day by
consultants and the nurses clambered around him to help him, he is a charmer
and even though his Italian was limited, he still managed to charm
everyone. Without being fluent in the language he managed to strike up a
friendship with a visitor who mistook him for Gattuso – the football player
who plays for AC Milan.
Coincidentally – perhaps another synchronicity –
a young man aged 25 also came in with suspect myocarditis from a village far
away from Catania. His parents drove four hours to see him and stayed
between visiting times sat in parks or coffee bars – sadly, they were not
granted the courtesy to sit with their son for the full day. However, not
once did they resent our being able to, simply saying to us “Can’t they
offer you somewhere to sleep as well, so you don’t have to leave him at
all?” As their son was also very poorly initially their kindness humbled me
– and still they did an 8 hour round trip every day. They explained they
were wealthy enough to stay in hotels but they had two other young children
at home who wanted their parents too. Within 24 hours it was decided that
the young man did not have myocarditis but they kept him under observation
for three days. His parents and I shared many conversations expressing our
gratitude at the experience and the knowledge of the doctors and consultants
at the hospital. I was so pleased for the young man concerned that he had
not had myocarditis.
Meanwhile, my partner back in the UK had to deal
with the numerous insurance requests and queries; contact the GP for reports
and return the calls of the many, many people who were enquiring and were
concerned about Alex. She spent hours on the phone every day. We rang
every evening with an update but I was aware of her frustrations too. She
longed to be with us and obviously see Alex; it was a difficult situation to
be in. As a compromise she went to have dinner occasionally with my sister
and her partner so she could feel surrounded by family (her family live
further away).
Meanwhile Francesca decided to fly back to the
UK on the 5th April. Partly, because she needed to but also to
keep my partner company too as she felt very much out of the loop. I was
very tearful when I saw her off at the airport. She was my link with the UK
and it was hard remaining happy all the time for Alex on my own – she
brought her own imitable style of humour to the situation which made Alex
happy, I wasn’t sure I could keep up to her standards.
I remained in Sicily until the insurance company
sent a doctor to accompany us on the flights back home – this was an
absolute pre-requisite of the insurance company and the hospital in Sicily.
The hospital would not release him until they knew he could fly home but
accompanied with a doctor and the insurance company too would not fly him
home until a medic accompanied him all the way back. The doctor duly
arrived on Sunday 8th April, assessed Alex and confirmed we could
fly home the next day. Alex’s face was a picture! He so wanted to be back
on his own territory. The last hours dragged. I thought Alex would never
get up early enough – we had to leave at 8.00am, I had never seen my teenage
son showered, dressed and packed on time!
We cannot forget that we had built an incredible
rapport with the nurses and consultants at the hospital but even more so
with the host family – they had expected one student to stay with them for
one week. Instead they had one student with them for three days and two
other members of his family there for nearly two weeks; whilst the hospital
had the three of us for ten days. Both in their own way were incredible
hosts. We still ring the family very frequently now and will be visiting
them next year – undoubtedly, I will pop into the hospital again to say
‘hello’ to the staff there too. With the staff we have a regular exchange
of texts and they ask about Alex frequently and sent a good luck message for
his trip to Cardiff.
The accompanying doctor (the lovely Dr. Joe)
flew with us all the way to Manchester. Alex had been given all his test
results and a discharge letter which I duly translated for anyone to use.
He was on 15 tablets a day. He had been recommended not to partake in any
sporting activity whatsoever for six months, to have a low salt diet, avoid
caffeine and alcohol and absolutely no heavy lifting. We arrived back home
on Bank Holiday Monday to posters and bunting welcoming us. I was so very
happy to be in a familiar and loving environment and more importantly with a
son who had survived.
The GP visited Alex the next day and re-admitted
him to our local hospital where he was monitored for 24 hours and advised to
come off all the tablets except one beta blocker. I was aware that part of
his medication would naturally come to an end as some were antibiotics, but
questioned the decision about the removal of all the rest – I was
concerned. I was informed that five consultants had had a meeting and this
was their decision. I was now back home in the UK, powerless and no longer
had daily consultations with the specialists. I felt more of a stranger in
relation to medical staff in my home country than I did with the medical
staff abroad – a great irony.
Alex returned home with more or less the same
recommendations but less medication. He had a further fortnight off
college, even though he had been recommended a month. He was desperate to
pass his course and was even more desperate to get to study a degree in
ceramics in Cardiff. He had, however, been advised that should he have any
more pains to completely disregard the NHS Helpline or the GP and take
himself to Accident and Emergency informing them that he had succumbed to
myocarditis previously.
Life went on, but I personally never relax when
it comes to Alex. I worry about him incessantly. He went to Cardiff
University in September. It is so far away but he has got a place on the
degree course that he wanted and I had to let him make his choices. Life
could have been so different for him, we are all aware that his outcome
could have been so much worse, so it is absolutely best that he follows his
heart as we never know what life has in store for us. I am pleased to say
that my partner’s sister lives in Bristol, which is literally half an hour
away, and knowing that a member of family is so near eases my concerns
somewhat. I have kept the course tutor aware, so feel I have done all I can
as a parent.
One day in June as Alex was taking me to work he
expressed his desire to talk to someone who had survived myocarditis as he
was fed up with people asking him what it felt like; what was the pain like;
what did he feel emotionally etc. I dutifully went on the intranet and
Google'd ‘myocarditis’ and ‘support’ – up popped Cardiac Risk in the Young.
I ‘phoned the organisation asking if this would be possible. They informed
me that Alison Cox would ring me to find out all the finer details and that
they would help.
On the way to work a couple of weeks later (27th
July), Alex dropped me off with the sentence ‘I had a bit of a do last night
at the cinema, my chest really hurt and I felt quite odd’ – I froze and felt
sick. I rang my partner and immediately we took him to our local Accident
and Emergency. The doctor on duty recognised that we were more aware of the
symptoms and effects of myocarditis and suggested – after many hours – that
Alex seemed alright and it may be advisable for him to wear a monitor for 24
hours. We should wait to see his cardiologist – we had an appointment the
following Tuesday. We all felt very uneasy with this recommendation.
I returned to work and – yet another
synchronicity – received a call from Alison Cox. I explained to her what a
coincidence it was that she had rung and told her what had happened. She
did not feel happy with Alex’s situation and kindly, so very kindly, advised
us that she would arrange an appointment with one of the best consultants
with regards to myocarditis – in her opinion - Dr Sanjay Sharma at King’s
College Hospital. She got the appointment for four days after. We
cancelled the appointment with our local cardiologist. We visited Dr
Sharma on the 31st July. He was a warm, welcoming and
knowledgeable man. He ran tests on Alex and was happy with his
recuperation. He was however, a little concerned that Alex had been taken
off a tablet that he told us patients should be on as a matter of course for
six months following any heart problems. We had been so right to challenge
the decision of the local cardiologist after all! He told us that he would
write to our GP and ensure that he was made aware and Alex could follow the
correct course of medication.
We asked the many questions we could no longer
ask, as we could not access our cardiologist easily. We also informed Dr
Sharma that Alex was moving to Cardiff and wondered if he knew whom he
should be transferred to. He mentioned a Peter O’Callaghan who was
exceptionally knowledgeable and just happened to be in Cardiff – the final
synchronicity of the tale for me.
I am so pleased that Alex’s misfortune happened
in Italy as he was treated so very well and indeed was diagnosed! I am so
pleased my son survived but I am aware of the many deaths from heart
conditions in young people and would so desperately like to help in any way
possible, as I was totally unaware of the unnecessary deaths for many young
people that are heart related.
I am ecstatic that I made contact with CRY
because without them we would never had met the lovely Dr Sharma and
received such solid advice which resulted in changing and improving my son’s
treatment. There have been many coincidences in our tale, but the greatest
one I feel is that my contact with CRY has made me so aware of the many
deaths that could be either avoided or recognised sooner than they are. To
my partner, my daughter, my family, friends and work colleagues I would like
to say that I am very grateful for all the help and support. To my son I
would like to say ‘never forget how very fortunate you have been, always try
to remember those who have not had the luck you have’. To CRY – well I
cannot thank the organisation enough. I am looking forward to receiving the
postcards which I intend to send out to my database contacts and please let
me know if there is anything I can ever do for you – including free
translations!
back |
