It’s Just Not Fair

It is a disgrace and a source of national shame that in 2010, in the country with the highest rate of cystic fibrosis (CF) in the world, we still do not have a purpose-built adult CF unit. An independent review of CF services in Ireland by Dr R.M. Pollock, published in 2005, found that most adults with CF were being treated in facilities that were dangerously inadequate. In reality, very little has changed since then for CF inpatients. The average life expectancy for a CF person in Ireland is a full 10 years lower than in Britain or the US, largely because of the failure to provide specially trained staff and sterile, en-suite hospital facilities. It’s just not fair that people with CF should be spending so much of their already short lives waiting for the most basic of services.

St Vincent’s Hospital, Dublin is the national adult referral centre for CF patients in Ireland. Last year, the HSE said that it didn’t have the money to go ahead with building a special 120 bed facility, with 30 en-suite rooms to cater for these patients. The public outcry that resulted, led our Minister for Health to declare that an alternative funding approach involving builders and banks, could deliver the facility as promised. This latest hold-up has come about as a result of a failure on the part of the Department to award a tender to construct the €40 million unit.

Orla Tinsley is a young woman with cystic fibrosis. For the past five years, she has campaigned vigorously for the provision of a dedicated CF unit. While receiving urgent medical treatment at St. Vincent’s hospital last week, she wrote the article below about her frustration that the designated site for the new facility remains empty…

“OPINION: The news that there has been further delay in the cystic fibrosis unit at St Vincent’s hospital in Dublin is disheartening, but hardly surprising, writes ORLA TINSLEY

Five years ago this month, my first article was published in this newspaper. I wrote about being an 18-year-old with cystic fibrosis treated in the national referral centre, St Vincent’s hospital. It was my first experience of sleeping in a room with senile and confused women who coughed, pooped and died in the room in which I slept.

I didn’t understand how the rules on cystic fibrosis care could change so much from a children’s hospital to an adult hospital. As a child I was not allowed to share a room with someone who had cystic fibrosis because of cross-infection.

In Vincent’s, sharing a room with another CF patient was a common occurrence until two years ago because there was no other space. I shared a room with a girl who also had CF and we became great friends over the summer months we were in there. We stood outside the hospital on the June bank holiday eating cool-pops and watching the mini- marathon go by. A month and a half later she was dead.

It was the first time I fully realised that CF is something you cannot control, although it takes a while to accept.

I ran the mini-marathon two weeks ago and finished in high spirits. When I sprinted past Vincent’s, I thought briefly of that day and was glad to be running. The next day I flew to Barcelona and lay on the beach, relaxing for five days. I had gotten over the previous rough summer of spontaneous lung bleeds that halted my life and made it impossible to plan anything. I had gotten over the collapsed lung last year and I started work, like any 23-year- old, which feels so great.

Then I got some shoulder pain: my lung had collapsed again. Had I trained too hard or done something wrong? My consultant said it was just one of those things that happens with cystic fibrosis.

Admitted to Vincent’s a week ago, I was put on 100 per cent oxygen to try and reinflate my lung and given painkillers. My medical team were incredible and I got a bed immediately.

For the first two days I shared a room with five other women on a ward where the staff did not specialise in cystic fibrosis. I was exhausted and filled with painkillers; I was not as aware as I needed to be. When I had to go for an X-ray, the nurse looking after me said I didn’t need oxygen to go along with my wheelchair. My oxygen saturations were good and it was a short trip.

I explained she was wrong, the oxygen was flushing the nitrogen oxide out and encouraging the lung to reinflate. We argued but I left without oxygen. I waited there without oxygen among patients who were coughing.

The ward sister apologised that I had been left without oxygen.

The distressing element of this scenario is that if I was in a unit with nurses specially trained in CF, this would not have happened.

I am just one person with cystic fibrosis and each person’s story is so individual. When I am not sick I work as hard as I can and I love my life. I know some day that that will end, things will get slower, I will spend more time lying in beds with various tubes.

I will be unable permanently to make that choice to get up myself and walk away from a screaming room-mate or a dying woman or drag all my medical equipment and tubing with me to sleep in the corridor, as I have done on previous occasions.

Not being able to access a single en-suite room when I needed one was not surprising, but it was frustrating. The lack of sincerity in the Government commitment to our dedicated CF unit is disheartening and degrading to the 1,300 people living with CF on this island.

There has also been no commitment to the number of beds that would be specifically ring-fenced for people with cystic fibrosis in the 100-bed unit that will treat many other illnesses.

We need 34 beds to deal with the daily intake of patients with cystic fibrosis. These beds cannot, as it has been suggested by those in charge, be given to other patients if people with cystic fibrosis are not there to take them.

We need cleanliness and exclusivity. We’re not asking for gold-plated oxygen tanks, we’re just asking those in power to help us stay alive in rooms that comply with international standards.

This litany of broken promises is embarrassing for Ireland. When I talk to patients or parents of young children abroad they are continuously shocked by the standard of care for CF patients here.

They have offered money to sort out our Irish mess.

I do not want to die in our Irish mess.

The eight single en-suite rooms at the national referral centre are not enough. We deserve single en-suite rooms when we present at hospital with a mild exacerbation or a painful, collapsed lung. It is the only way to get full quality treatment for most patients with multi-faceted cystic fibrosis.

People waiting on the transplant list deserve to be in single en-suite cubicles.

This time coming into hospital, I didn’t have to go through AE, but I will have to again. This time, no one used the room I slept in as a toilet or had MRSA or screamed throughout the night, forcing me to sleep in the corridor.

But it will happen again and is happening to other people with cystic fibrosis around Ireland who are exposed to life-threatening cross-infection as you read this.

The Pollack report was published in 2005. It  In reality, very little has changed since then for CF inpatients. When building eventually starts on the unit, it will take 14 months to complete.

We live in hope with a heavy dollop of cynicism, as always.

I walked by the site in the sunshine the other day during physiotherapy. It sits there, decanted and waiting, just like the rest of us.

If there’s such a thing as campaigners fatigue, I may be experiencing it. I have been writing the same thing for five years. It’s a depressing thought that I will be doing it for another five”.

I salute Orla Tinsley for writing this courageous article. It’s a damning indictment of our government’s appalling lack of commitment to CF patients who continue to be exposed to life-threatening cross-infection. The Irish political system is rotten to the core if it can allow this issue to continue. It’s just not fair!

Information Source: The Irish Times 25/06/10 and 26/o6/10 and The Cystic Fibrosis Association of Ireland.

All Bunged Up

No, I’m not constipated and I haven’t got a cold or sinus infection but I definitely sound different. Can you guess why I sound all bunged up?

At long last, the custom-built nasal prosthetic bung has arrived in the post. The mould for the ‘bung’ was taken exactly a month ago today and I’d actually given up on ever seeing it arrive. It’s now four months since the graft surgery in Nottingham and the donor site in the left side of my head (where the graft was taken from) has still not healed. When I saw the surgeon last month, he felt that if the air could be occluded from entering the raw side of my head, it would facilitate healing. Hence my dispatch to the Maxillofacial laboratory to have a prosthesis made.

I have to admit that I’m suitably impressed by what has been produced. The nasal prosthesis is skin-toned (making it invisible to others) and hollow and fits inside my nose perfectly. It’s easy to insert and is soft and comfortable to wear without irritation. In fact, the only way you’d know that something has changed, is by the nasal intonation in my voice. I was warned that this would be the case but I really don’t care if it succeeds in getting my head to heal. I was also warned that the ‘bung’ could fly out of my nose if I sneeze violently. You have been warned!

On a slightly different topic… have a look at the picture below which I took (using a camera phone) from the inside of a hospital room in Nottingham.

The door on the left was the entrance to the single room that I occupied last February.

The door on the right was the entrance to the en-suite bathroom.

If you’d just had surgery, would you be concerned about someone coming into the room and colliding with you as you were entering/exiting the bathroom? I was!

I couldn’t believe the stupidity of the design of this hospital room.

What a week!

It all started last Sunday. We had some visitors staying and I wrongly assumed that my constantly recurring headache was as a result of the extra workload. I’m well-accustomed to popping pain relievers in order to function normally and I make no apology for it. As anyone who suffers from a chronic condition will know, it’s the only way to get things done. The secret however, is knowing when to shout for help.

When I dragged myself out of bed last Monday morning I knew I was in trouble. I’d barely slept a wink overnight as my headache was no longer responding to pain killers. As luck would have it, I’d a hospital appointment already booked with the surgeon for the following morning so expert help was at hand.

By the time the surgeon got to examine my head on Tuesday morning, I was in so much pain I could barely talk. A few hours later, I was lying inside an MRI scanner having a brain scan to rule out a possible brain abscess. Thankfully, nothing of this nature was diagnosed although a nasty infection was visible at the site of my recent surgery.

The same evening, my daughter arrived home from her work placement in a hospital, looking like death. She was suffering a flu-like reaction to travel vaccinations received the day before. Despite running a very high temperature overnight and still looking very pale the next morning, she insisted on going back to work. By lunchtime, she was in A&E of the hospital having developed a severe nose bleed while on the wards. Her nose had to be cauterised to stem the flow of blood and she limped home to bed for the second evening in a row.

The next day, I woke with horrible nausea and the return of colitis as a result of the antibiotics prescribed to treat my head. I had no choice but to lie very low that day.

On Friday morning, my husband was admitted to hospital for a cataract operation. Having collected him from the hospital at lunchtime and brought him home to recover, I was looking forward to a quiet afternoon but no such luck. One of our cats appeared with his tail bent double and I knew immediately that an urgent trip to the vet was in store. Last year, this same cat became very unwell having developed an abscess in his tail (most likely from a bite from another cat) and the tell-tale sign was a drooping tail. So, Friday afternoon was spent getting the cat sorted with an antibiotic.

As if the week hadn’t been testing enough, Saturday morning started with an early morning trip to bring the eye patient back to the hospital for a routine check. Having delivered the patient safely home again, I then attended a funeral before spending the afternoon at the nursing home where both of my parents are in rapid decline at the moment.

Today, apart from frequent trips to the loo, I’ve done nothing but loll around in the garden enjoying the sunshine. The pain in my head has eased but I’m not out of the woods yet. If I go quiet again next week, please don’t worry. Wimbledon fortnight starts tomorrow. Bring it on!

The Buck Stops Here

For anyone who has ever been diagnosed with a missed miscarriage, I expect that this week’s news about miscarriage diagnosis may well have proved somewhat unsettling. This latest health scandal only emerged when a woman who was wrongly diagnosed with a miscarriage, decided to go public with her story to encourage women in similar situations to get a second opinion if they have any doubts.  About a dozen women have subsequently come forward with stories of having been wrongly told by maternity hospitals that they were carrying dead babies, only to give birth later to healthy infants. More than 150 people have contacted emergency helpline numbers since yesterday. Health Minister Mary Harney is continuing to refuse to comment on the issue, claiming that it is a matter for the HSE.

*”The HSE has been forced to instigate an investigation into all suspected miscarriage misdiagnosis cases over the last five years in an attempt to uncover the true scale of the growing terminated pregnancies scandal. The review will focus specifically on women who were recommended drug or surgical treatment (D&C) to remove what was in reality a perfectly healthy foetus. The nationwide examination will focus initially on complaints by the expectant mother at the time of the incident. It will also examine a growing list of new cases which have come to light this week, and further disputed cases which may or may not involve miscarriage misdiagnoses. The review will be confined to the past five years. ”

Many moons ago, I was diagnosed with a missed miscarriage at the end of the first trimester of my 2nd pregnancy, having contacted the maternity hospital for advice as I’d noticed ‘spotting.’ An ultrasound scan was carried out by my obstetrician at the hospital and I was told that the pregnancy had failed. Apparently, there was no heartbeat visible, just an empty embryonic sac with a diagnosis of a ‘missed miscarriage’ and a referral for a D&C the following day. At the time, a missed miscarriage was medically referred to as a ‘missed abortion’ and the subsequent D&C was referred to as an ‘evacuation of the retained products of conception (ERPC). Having arrived at the hospital as an expectant mother, I left in tears with those horrific terms reverberating around in my head. When I returned to the hospital the next day, no further scan was done to confirm the diagnosis prior to the D&C being carried out under general anaesthetic. Following this week’s awful revelations, I’m amazed that I never thought to question the diagnosis. I suppose times were different then.

Mary Harney should know better than to pass the buck to the HSE. After all, she is the Minister for Health and Children.

* Information Source: Irish Examiner

One Year On

I received the lab report from Nottingham today.

My head is still colonised with Staphyloccus aureus but it’s NOT the resistant form of this bug.

I remain clear of MRSA!

Exactly a year ago to the day, I was admitted for surgery in Nottingham with the surgeon who gave me this news today. It’s been a hell of a year since but at least I’m still here to tell the tale.

And it’s really nice to be able to share some good news for a change.

Where did you get that hat?

In March 2007, I underwent an extremely rare operation in a specialist surgical unit in Nottingham. A Riedel’s procedure is an operation of last resort and is only used in patients where all other surgical treatments have failed. The procedure causes a cosmetic defect in the forehead but reconstruction can be done at a later stage if necessary.

This first picture was taken to mark my safe return from the operating theatre. During the surgery my head was opened from ear to ear via a zig-zag coronal incision and my ‘face’ was peeled back to the bridge of my nose, to expose the front of my skull. The diseased anterior wall and floor of both frontal sinuses was cut away leaving behind a large hollow in my forehead. The edges of this bony hollow were then ‘chamfered’ (planed) to make a gentle curve so that the soft tissue of my face could fall in and line the hollow area.

My ‘face’ was then put back where it belongs and the coronal incision was stapled together before a pressure bandage was applied with a drain in place to minimise haematoma formation. Ten days later, the staples (all 59 of them) were removed from my scalp and I was well on the way to making a good recovery. I’ll never forget how good it felt to be able to wash my hair again.

The pictures below document my recovery following this operation. My return home from hospital in April of that year happily coincided with the early arrival of summer so I got to enjoy a whole month of lazing around in the sunshine. The sun proved to be a perfect tonic and quickly dried up the pressure sores on my forehead.

In the last year, I’ve had two further operations on my head in Nottingham plus extensive IV antibiotic therapy to eradicate a bone infection. The final photograph shows how my face looks today now that all the swelling has finally subsided. Reconstructive surgery is available to improve the contours of my forehead but having recently discussed the options with my surgeon, I’ve decided not to proceed.

I’m more than happy to leave well alone.

Up close and personal

I was asked recently if I’d ever posted any pictures on this blog to document the problems I’ve had with my head over the years. The answer is, no but it started me thinking that perhaps it’s time I should. Words can only convey so much of a story whereas pictures say so much more. So, thank you Alhi for giving me the push that was needed!

My story goes back a long way as I’ve had multiple surgeries on my head as a result of having chronic sinus infections for most of my adult life. About 5 years ago, a decision was taken to insert a stent close to the base of my brain, to drain a recurring abscess in the right frontal sinus. It was at this stage that my husband decided to record my surgical journey with a series of ‘up close and personal’ photographs. Little did we know then of the battle that lay ahead.

This first photograph was taken in 2005, several days after the operation to have the stent inserted in my head. The incision follows the contour of my eye socket and is continued through the eyebrow for maximum disguise. This operation was actually the fifth time this incision had been used to access the right side of my forehead. All previous access had been gained through my nose or upper jaw.

The second photograph was taken 3 weeks later while I was still recuperating from the surgery. I was actually on a sailing holiday at the time when I developed severe headaches and my eyes and forehead started to swell. I knew something serious was going on but I didn’t know what so we made haste back to the hospital. This photograph marks the beginning of my journey with MRSA.

This last photograph was taken following my treatment for the orbital cellulitis. Once the MRSA wound infection had been diagnosed, the stent had to be removed from my head and it took several courses of intensive IV antibiotic treatment, administered over a 3 month period before I was finally discharged from the hospital. I’ve included this picture as it shows how well the incision healed despite the setback.

Less than a year later, the MRSA infection recurred and resulted in the development of chronic osteomyelitis in the frontal bone of my head. Further extensive surgery and treatment has been required in the meantime but I’m going to save those pictures for another day.