Yellowland

February 11, 2012

The colour yellow tends to have negative connotations. Traditionally, it’s been associated with cowardice and deceit. In hospitals, the colour yellow is used to indicate an infection control risk. Last week, Steph’s hospital chart was awarded another bright yellow sticker.

Yes, you guessed right… I’m infected with MRSA again! 

I’ve been fighting a constant battle with recurrent infections in my head since Christmas. Antibiotics gave temporary relief but the infection repeatedly recurred, accompanied by nasty headaches. Two weeks ago, I requested a hospital appointment to get nasal swabs taken and analysed. Shortly afterwards, I was informed that I was indeed MRSA positive. The prosthetic implant which was inserted into my nasal septum last November, was thought to be the source of the infection.

Pacemakers, artificial heart valves, catheters and many other surgical implants commonly become contaminated with bacterial biofilms. The longer a contaminated device remains in the body, the greater the risk of antimicrobial resistance developing. As my infection had been confirmed MRSA positive, I was advised to have the implant removed as soon as possible. Following consultation with my surgeon in Notts, the decision was taken to remove the prosthetic implant.

Sign on door to Steph’s room at the hospital

Last Tuesday, I was admitted to hospital as a day case and nursed in isolation while the prosthetic implant was removed under sedation. This involved another trip to the operating theatre but on this occasion, I remained conscious throughout. When you are MRSA positive, you’re last in the line for everything so as to minimise the risk of cross infection.

When the call finally came, I was whisked directly into an operating theatre, transferred onto the operating table and attached to the various monitors before being given intravenous sedation. I expected to be knocked out by the sedation but far from it. I was able to continue a conversation with the surgeon and anaesthetist while the implant was being yanked from my head. It felt a bit like having a wisdom tooth removed except that it was from my nose rather than my jaw. I was then wheeled straight back to my isolation room to sleep off the effects of the sedation before being discharged home.

It was hoped that the prosthetic implant would remain in place for at least two years to maintain healing of my septum. Instead, less than three months later, the implant now sits in a specimen container while I await further assessment. My head feels a great deal more comfortable now that the source of infection has been removed. What happens next, is anyone’s guess.

I may be labelled yellow… but I ain’t no coward. MRSA watch out!


Memories

July 16, 2010

When I got out of bed this morning, I knew there was something significant about today’s date but I couldn’t think what? Having escorted my husband to the private hospital where he’s undergoing a minor operation today, I drove home deep in thought. It was another few hours before the penny dropped and then the memories came flooding back.

This day last year, I was re-admitted to a large, public hospital via the emergency department having been at home for only 6 days following a week of IV treatment in the hospital. I’d developed a nasty infection in my head following an operation some weeks earlier. At home, the pain in my head had gradually increased to a point where I could no longer bear it and I knew I needed help. As I sat in A&E going through the process of admission, the swelling around my eyes began to visibly worsen so I was rapidly hooked up to several drips and put in the queue for transfer to a ward. As luck would have it, a bed was found within hours and this was to become my home for the next twelve long days.

On arrival in the ward, my first reaction was the gloominess of my surroundings. I was transferred to a bed in a dark, cramped corner of the ward where I lay exhausted but grateful to have escaped A&E so quickly. On looking around the room, it soon became obvious that I was the youngest by far, by at least 25 years and I’m no spring chicken myself! Two of the patients were bed bound, a third was a psychiatric patient and the fourth lady (in the bed next to me, luckily) was a sprightly 90 year old who became a great buddy over the following days. We were soon doing the crossword together everyday but sadly, she was discharged home all too soon only to be replaced by a seriously ill, incontinent patient.

I’ll never forget the days spent in that ward. The two old dears in the beds nearest the windows complained whenever the windows were opened so they remained closed most of the time despite having two incontinent patients in the room. I used to take myself and my drip to sit by a window in the corridor, to escape the awful conditions in that room. I was also trying to escape the attention of the psychiatric patient who was very restless and needed 24 hour care with her own special nurse.

Every morning, a new agency nurse would arrive on our ward to care for the daily needs of our confused room mate. Each day, I would watch the same situation evolve where the mood of the psychiatric patient would gradually deteriorate to a point where her young nurse could no longer calm her and we would then be exposed to many hours of disturbed behaviour. After a few days of observing this situation, I could clearly see where these inexperienced nurses were going wrong so in order to save my own sanity, I decided to intervene. Every time a new nurse arrived, I would quietly warn them of the pitfalls that lay ahead and give them tips on how best to manage the situation. This worked a treat and our days became slightly less chaotic as a result.

The nights were another story. The agency tended to supply ‘carers’ rather than nurses for night time duty. Many of them were college students with little or no nursing experience who had simply enrolled with the agency as a summer job. Having put my eldest son through college and with my daughter still in college, I understood these ‘kids’ and often chatted with them quietly for hours while their charge slept soundly thanks to heavy duty nightime sedation. As my bed was nearest to the door, these carers tended to sit all night on a chair at the end of my bed, using the light from the corridor as a reading light. I would often settle down to sleep for the night with a hunk of a male student sitting just inches away from my feet!

Until this morning, I hadn’t given another thought to the time spent in that room. I was eventually transferred to another ward where I spent a much happier fortnight being nursed back to health in a lovely bright, airy room and where my companions were delightful. Sitting here a whole year later writing about my memories from that time, it feels like it was only yesterday. Today, it’s my husband’s turn to experience hospital life from a horizontal position. When I collect him from the day unit shortly, I know I’m going to find it very hard not to smirk at his tales of woe!


It’s Just Not Fair

June 27, 2010

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.


Dear Mary

July 9, 2009

To: Ms Mary Harney, Minister for Health & Children

I’m writing to let you know my views on the public health service. Having spent three days last week residing in the busy A&E department of a large teaching hospital, I feel qualified to comment. The experience has left me wanting answers to many questions. Please listen to what I have to say.

Last Friday my doctor sent me to A&E for emergency care as I’d developed a serious complication following surgery some weeks earlier. On arrival in A&E, I was rapidly processed by a triage nurse and seen by the registrar on-call. An immediate decision was taken to admit me to the hospital. I finally reached a ward on Monday afternoon! During the 3 days and nights spent in A&E, I was extremely well-cared for but the conditions were hell. The staff were so busy, patients had long waits for help. It was like being in a war zone, people lying on trolleys everywhere with further casualties arriving by the hour. It was also extremely noisy with little or no privacy. These conditions do not aid recovery.

My first question to you, Mary,  is this… why must sick and injured people be exposed to these awful conditions in order to be admitted to hospital? Where are the 1,000 extra beds you promised when you took over as Minister for Health 5 years ago? I sure could have done with one of those beds last Friday.

It was a great relief when I was finally transferred to a 4-bed semi-private ward where I remain. I’m receiving excellent medical and nursing care here. Thankfully, this hallmark of Irish healthcare remains intact despite the inadequate funding of our public health service. I’ve no doubt that this is due to the dedication of the staff who work in frontline services. The unit I’m in, has been recently refurbished and is beautifully fresh and clean. I’ve no complaints really except I’d obviously prefer to be in my own howm. The catering is good, plenty of good nutritional food and frequent offers of hot/cold drinks. I’m very aware that this aids a speedy recovery and subsequent discharge from hospital.  I’ve not always hit this lucky.

Over the years,  I’ve spent many weeks as a patient in this same hospital, on the public wards.  It has always been a grim experience in terms of patient comfort, lack of facilities etc. I don’t think much has changed although I have heard that hygeine levels have improved on the big wards. My medical history is extensive so I choose to hold private health insurance to ensure that I can get care when needed. My case is complex and so I cannot be admitted to one of the smaller private hospitals for treatment although I’m fully insured to do so. These smaller hospitals cannot provide the care I require.

I want you to know, Mary, that it’s distressing to observe your clear policy of starving the public hospitals of funding while you promote the development of co-located private hospitals. The staff who work at the frontline in our public hospitals, are fantastic but they are being stretched to the limit to provide the care needed in our under-resourced public hospital system.  I plead with you to stop bleeding our health service to death while you continue to promote an inequitable health service. Give us a break, Mary.

The semi-private unit I’m in, is excellent. I do not need for anything better as all my needs are being met here. I’ve hit lucky on this occasion as this is the most comfortable unit in the hospital. However, the WHOLE hospital should run like this unit. Instead, the majority of the rest of the hospital is no longer fit for purpose. It’s time to put our health resources to proper use. Surely everyone deserves fair and equitable healthcare?

I look forward to hearing from you.

Steph @ The Biopsy Report


Where There’s Hope

January 20, 2009

wild-daffodils1

Daffodils are one of the icons of Spring. Sitting at my mother’s bedside in the nursing home where she lay motionless, I gently whispered in her ear yesterday that Spring is on it’s way. I told her about the first daffodils of the year beginning to peep their heads above the freezing ground. On hearing this news, my mother opened her eyes and rewarded me with a huge smile.

This conversation brought me back to a time when I was in a little hospital room in the UK, recovering from major surgery. My husband had returned to Ireland to sort out a business problem leaving me to fend for myself for a couple of days. Being in hospital was bad enough but being far away from home meant that I had no visitors. My beacon of hope during that time, was a huge bunch of daffodils in the corner of my room. They had been given to me by a doctor from a nearby hospital whom I’d never met but who I knew to be an old school friend of my husband. When he heard news of my operation, he picked the daffodils for me from his garden to brighten up my stay in hospital. I’ll never forget this kind gesture. Those flowers represented a world with which I was familiar, unlike the lonely surroundings in which I found myself at that time.

My mother has always loved garden flowers and although now severely disabled, she welcomes any opportunity to be taken outside in her wheelchair. We made a pact yesterday to mount an expedition outdoors as soon as the first flowers of Spring appear.

Where there’s life, there’s hope and where’s there’s hope, there’s life.


Vive la France

October 17, 2008

Okay, so here’s how the Irish health service could/should operate if it was properly resourced and managed. The following article was published in the Irish Times and documents the experience of an Irish person who required emergency care in a hospital in France.  I’ll leave you to draw your own conclusions.

Vive la Différence

“No waiting room, no trolleys, no queues, no admission fee and free parking. It was very strange indeed”, writes Michael Foley

“It is 1.30 in the morning, the first night of the annual Feria, when Beziers, in the south of France, goes en fete for a week of partying. Getting to A&E through streets thronging with revellers is a feat in itself, but arriving at the hospital is an even more unusual experience.

I rushed to hospital, with what later turned out to be a blocked artery.

Where is the waiting room? And where are all the corridor trolleys gone? Well, there is no waiting room and no queue, no line of people drunk or groaning with pain, and facing a 12-hour wait, just a woman at a desk and a sliding door that lets you straight into your own single-occupancy examination room. Parking is free and there is no €60 admission fee either.

Very strange indeed. It is so strange that we waste valuable time assuming we are at the wrong place. Why no waiting area? Goodness me, said a French nurse, urgence, the French name for the A&E, means someone requires urgent treatment; you could hardly expect someone in need of immediate treatment to wait, now could you?

It has to be said that when I last attended a Dublin hospital, eight months previously, I did not have to wait either. As I pointed to my heart and handed over the €60 casualty charge, a wheelchair almost buckled my knees as it wheeled me into triage, but behind me were others who would be waiting and waiting and waiting – unlucky enough not to have chest pain.

Back in Beziers, and two-and-a-half hours later, I had blood taken, a brain scan, a chest X-ray, and all the test results returned, and was tucked up in bed. At no stage did I see anyone on a trolley in a corridor.

Trolleys were used to ferry people. Patients slept in beds. My room, in a public ward, was for two patients, with a toilet and shower en suite. The equipment was new and worked. The bed was high-tech and moved in almost every direction.

What followed were days of tests, done without delay, and all ordered by specialists, who personally delivered results, usually within the hour. I was given scans, X-rays, MRIs and investigations I thought I might have been given eight months previously in Dublin. “Should I have had this test before?”

The doctor was non-committal.

The first specialist was a neurologist. The Centre Hospitalier de Beziers has three (as opposed to a dozen for the whole of Ireland). The doctor was a quiet, respectful woman who was available throughout the day, and who delivered the test results she herself ordered.

There was no entourage, no one to fawn and laugh at her jokes. She even had office hours when family could call in for information or advice – no need for intervention, divine or otherwise here.

We kept checking as to her status with the nurses, because her availability was akin to that of a registrar or a junior doctor in an Irish hospital, but yes, she was everything one could possibly want in one’s neurologist – professional, available and attentive. Extraordinarily, if a test was required, it was done immediately, and she delivered and discussed the results in person.

The second specialist, a vascular surgeon, again was one of three. When surgery was decided, I was moved to another floor and opted for a private room. Cost €40 a night.

Surgery was successful and after a period of recovery, I was out. When discharged, I was given a slip that was officially stamped, this is France after all, and that was it; I paid not one cent.

Under the EU health insurance regulations, I received the same treatment as a French person – 80 per cent of the cost borne by the state – and like a French person, my insurance (in my case, the VHI) paid the rest, including the cost of the private room.

One of the most remarkable features of the hospital was the level of hygiene. And not a nun in sight. The corridors were completely clear. The cleaning trolleys, with their colour coded buckets for every individual surface, plied up and down the corridors.

Masks and sprays were used as appropriate, from one patient to another. Head-to-toe disinfection twice before surgery . . .

In the Dublin hospital I attended recently, there was one shower for some 50 patients. This was in a room with a bath fitted out for disabled use. There were cracked tiles around the shower. The bath/shower room was also used as a store. If you were able to walk, you washed and shaved at a row of washhand basins, like a 1960s boarding school.

The VHI was amazing, constantly phoning me and my wife to see if I was alright. Did I want a second opinion? Was I was satisfied with the doctor? Was everything explained adequately? It also had a French-speaking doctor contact the hospital doctors who came back to explain what was going to happen.

Isn’t it extraordinary that the VHI pays no such attention to the interests or concerns of their members in Irish hospitals?

Would I have returned home for treatment if it had been feasible? Not if the advice I was given was to be taken seriously. Proof of the serious lack of confidence there is in the health service in Ireland was evident in the number of calls I had, from friends, colleagues and family, telling me how lucky I was to be sick in France and not Ireland: “Stay where you are. It’s the best place to be.”

If I returned, they thought, I might not get a bed, and if I did, I would be at risk from MRSA. “MRSA is a given,” said one friend, whose mother recently contracted it.

For the next two weeks, a local nurse visited to clean the scar and eventually remove the staples holding the surgical opening together. Cost for a home visit, €5.50 a day. But it is not just money that is the main difference between the two systems as experienced by patients. I was treated as a critically ill patient, the same as if I were French, by nurses, doctors, specialists and home visits,

I even have a GP in France now, who gave me a free consultation, just to get to know me. I only hope we don’t get to know each other too well.”

With thanks to the Irish Times for their online publication.


Need I Say More?

October 14, 2008

Orla Tinsley suffers from cystic fibrosis. Earlier this year, Orla received a People of The Year award for her campaigning in the Irish Times on behalf of cystic fibrosis sufferers.

Ireland has the highest incidence of CF in the world and to it’s shame, it can also claim to have the highest mortality rate and the lowest life expectancy for CF sufferers. The critical issue here is the limited availability of suitable isolation facilities in Irish hospitals. For optimum management of cystic fibrosis, patients require isolation in individual en-suite rooms to prevent cross-infection occurring but CF patients are being denied this opportunity. Instead, these vulnerable patients must present themselves to A&E where they are exposed to high risk infections while they await admission to a hospital bed. They are then transferred to a mixed ward to be nursed alongside mainly geriatric patients with a variety of illnesses. This practice beggars belief. The high rate of MRSA infection in Ireland has done little to ease the plight of the CF population. Not only is MRSA a constant threat to immuno-compromised CF patients, it’s prevalence has meant that the extremely limited supply of isolation rooms have instead been prioritised for MRSA infected patients.

I’ve written about Orla before to document the appalling hospital conditions which she and many other cystic fibrosis patients must endure.  CF patients have been waiting for more than a decade to have a dedicated CF unit built at St. Vincent’s Hospital in Dublin and they are quite literally sick waiting.

Here is her account of her recent visit to hospital as published in today’s Irish Times.

“Dear diary: It’s Tuesday and I’m back in hospital for another blast of treatment for my cystic fibrosis, writes Orla Tinsley

I … ENTER St Vincent’s hospital in Dublin as I need treatment for an exacerbation of my cystic fibrosis. I have two options. I can go to A&E and wait on a trolley for a bed, or I can go home and wait on a waiting list.

Although my home is safer, I choose the A&E. I can’t continue in college or do the things I want to do if I am unwell, so I wait on a trolley.

A special type of needle, called a gripper, is used by most CF patients who have frequent infections. I need one now, but no one in A&E is qualified to put it in. A nurse from the designated CF eight-bed ward is called and comes down to put it in for me.

I am on a trolley in A&E and this procedure requires a certain amount of exposure. The porters are nice, the nurses are nice – they are both busy.

We ask if there is somewhere private for me to get my needle put in. There is nowhere. The specialised nurse and I think of what to do, she decides to take me out of A&E to try and find a room in the main hospital.

The A&E nurse stops us.

For a procedure that requires the utmost cleanliness, she says we can use the bathroom. The toilet in a busy, infection-ridden A&E is open to us.

We leave the department for the main hospital. It is after hours, treatment rooms are closed and wards pose a cross-infection risk. We eventually find an open door in a room that we know is clean and use it.

I go back to my trolley in A&E wishing I could have slept in that room. In A&E a nurse comes to give me my nebuliser through an O2 cylinder. I tell her that there are nebulising sets on the CF ward; if she could just ring them up she could get one. I’m sorry I didn’t bring my own, but she doesn’t understand what I’m saying. I explain twice more, then a porter who had been listening steps in. He tells her to leave it and goes up to the ward to get it.

There is no plug near the trolley I am on and so I have to wait before I can have it. I get moved to another square of the wall so that I can take my nebuliser. I then get moved into a curtained area for the night, and I am relieved.

The next day I am moved out to another curtained area. The nurse minding me is nice but busy, and late giving me one of my drugs. I ask her three times over the next few hours. Being on this drug long-term can affect kidney function, so the morning time is the best time to have it.

I use my mobile to call my CF nurse, who calls the A&E department and asks them to give me the drug. I still do not get it. I try calling my CF nurse again, but then my battery dies.

I walk up to their office and they call again, frustrated for me. They should not have to sort this out. I go back to A&E and get it.

Late that night I get a bed on the semi-private ward. It’s Wednesday night. I am in a room with a young girl, a lady with cancer and two elderly patients.

I am aware from the time my aunt was dying with cancer that I am not allowed to be around immune-suppressed cancer patients. Over the next few days I find out that the lady is in fact immune suppressed.

I am a danger to her, and I don’t think it’s a good thing to tell her.

One night the breathing of the elderly lady in the bed beside me gets worse. The next day her family are by her bedside and they keep apologising to me that it’s happening in my room. They are so, so sorry.

I tell them please, it’s not your fault. And I feel guilty that they feel so bad about it as they watch their mother die.

Another woman comes in, a new patient replacing the young girl. She is coughing violently, but seems pretty happy. She makes a phone call to a friend to tell her that at least she doesn’t have double pneumonia, like her neighbour, she only has pneumonia.

I feel the room shrinking.

She tells her friend on the end of the line: “Don’t get the sliced melon from Marks and Spencer . . . It’s right inside the door, I want the diced one,” she giggles down the line.

At that same moment a relative behind the curtain of the lady beside me says: “Is she gone? Yeah? Oh God.”

The other woman continues to talk on her phone. After the lady passes away her body stays in the room for three hours.

That night, another lady with cancer moves into the bed beside me. Her temperature has gone up so she had to come in. Both ladies with cancer are so much fun to be in a room with.

The lady who had just moved in is only starting to lose her hair, the other lady had already lost hers. She wants a “Posh Becks” hairstyle, like Victoria and David Beckham when her hair grows back. We giggle at the thought.

At every opportunity I leave the room to talk to the nurse about trying to get moved. Bed management are aware of the situation, but there is nowhere to move any of us.

I talk to the ladies about it and tell them I might write about it. They are meant to be in isolation, but they are not. I am a risk to them, and then there is the lady with pneumonia in the corner, who poses a risk to us all.

I try to sleep with a mask to protect myself and the people in the room, but it is sweaty and a bit restricting for breathing.

On Monday I am given the option of moving to a two-bedded room on the same ward. I accept and find myself in a room with one the kindest, most vivacious elderly ladies I have ever met. She is chatty, but knows when to leave me alone. She is a pleasure to share with, but even our camaraderie can’t disguise our different needs.

As she is unable to leave her bed, she needs the commode two or three times during the night. She is the nicest woman in the universe, but my cough is already making it difficult for me to sleep.

The rattle of the commode at 12.30am, 4.00am and 6.30am rips into my ability to rest. There is a smell too. It is not her fault, but I cannot sleep properly.

One day she is complaining of discomfort and extra swelling in her legs. I only become aware of it because this woman is not a typical patient.

She never complains, even though she has a chest drain in, which makes it impossible for her to walk around. That morning she complains a lot about her feet.

It is three hours at least since someone has been at her chest drain and I notice that it is clamped. I tell the nurse, he comes in straight away and deals with it. I ask a medical person about it later – chest drains should never be clamped unless they are about to be removed.

She feels better, we’re getting on well, but I’m still not sleeping well. We keep in good spirits chatting, and she tells me about how her handbag was taken while she was in hospital. Luckily her daughter was with her to cancel her cards and keep her afloat.

It wasn’t her bank card so much, but being without her reading glasses really upset her. She was told a member of security would come back to investigate the situation, but they didn’t.

There are 28 cystic fibrosis patients in as I write this, and there are eight single en-suite beds. The beds are allocated on the advice of the microbiologist. There is a long list to get into them. The eight single en-suite beds are on a new ward, but there are also general beds on that ward too for patients who do not have cystic fibrosis.

In February this year former junior minister for health Pat Gallagher said 14 single en-suite rooms would be available by the end of the summer for CF patients. I remember being told early this year that there would be six more, in another area in the hospital.

I ask a person in officialdom what is going to happen with the six other beds we desperately need until our unit comes at the end of 2010. This person tells me that there are no plans for six beds, that they have heard nothing about it. They have no funding; they have other things to sort out first. They want to see how the eight single rooms work.

Meanwhile, the winter months are coming, the number of cystic fibrosis patients needing inpatient treatment will rise. Some will refuse to go into hospital and risk damaging themselves, some will come to A&E, and risk damaging themselves.

Others can be treated at home, but if that doesn’t work they will have to come in anyway. Those who are not in the eight beds will continue enduring cross-infection, exhaustion and fear every time they are in hospital.

We will all think of the recession and what that means for us. We will comment to one another that 2010 seems like a lifetime away, and feel sick to our stomach that some of the 1,100 people in Ireland with cystic fibrosis will not see it.”

This article is published courtesy of the Irish Times online.