You win some, you…

The good news is… I’m on the mend.  The bad news is… I missed a weekend away with good friends. You can’t win ’em all, I suppose?

I was a bit “under the weather” last week. The back of my throat felt congested and my chest was a bit wheezy but as I’d no cough or cold, I concluded that the symptoms were probably viral in origin and not a cause for concern. I was wrong.

On Thursday evening, the congestion in my upper throat gradually turned sore… very sore… and I began to feel distinctly unwell. I tossed and turned all night in discomfort and while my throat had eased by the following morning, I’d developed severe pain in my head. I now had all the signs and symptoms of a bacterial infection which had homed in overnight on the vulnerable area of my head and I knew treatment was urgently required.

My GP took one look at me and sat down to write a letter to the admitting doctor at the hospital where I’ve been treated on many occasions for the severe infections in my head. However, luck was on my side on this occasion.

Being a Bank Holiday Friday, my GP agreed to let me go home to my own bed armed with oral antibiotics and a concoction of opioid pain relievers, with the promise that I would report to A&E if my condition worsened.

To be honest, the rest of the weekend is a bit of a blur… thanks to whatever was in that prescription. All I can tell you is that the pain in my head has now eased and the worst is over. While I missed out on the holiday with friends, I’m very happy to have avoided being admitted to hospital. Not only is the battle won, I feel like I’ve won my own lottery.

Risky Medical Procedures

A friend of mine is going into hospital tomorrow to undergo a risky medical procedure.

She spoke to her surgeon earlier today to explain that she’s feeling a little nervous, but the surgeon was able to reassure her…

“There’s only a 1 in 100 chance of anything going seriously wrong”, he said.

“Besides, I’ve done 99 of these operations before and they’ve all been successful”

A National Disgrace

I can’t remember when I last felt so passionate about something.

I don’t have cystic fibrosis (CF) nor am I related to someone who has, but that hasn’t stopped me feeling very angry about the lack of government commitment to the cystic fibrosis community in Ireland. While the Celtic Tiger roared in this country, young adult CF patients were left to suffer in conditions which continue to be described as dangerously inadequate. Many have died prematurely because of the failure of our government to provide them with the care and facilities needed. The plight of the adult cystic fibrosis sufferers in Ireland, is a national disgrace.

Ireland has the highest incidence of cystic fibrosis in the world and should have facilities and services that reflect this unenviable position. Instead of being a world leader in CF care, we fall way below the European recommended standards. The average life expectancy for a CF person in Ireland is the lowest average in a first world country.

The needs of the CF community are straight forward. They need funding to be provided for a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease; they need isolation in en-suite rooms where they don’t have to worry about the risk of cross-infection; but perhaps most of all, they need reassurance that when they require hospital care, they will be provided with the means to survive. Is this not the right of every citizen of Ireland?

Cystic fibrosis sufferers are some of the pluckiest people you will ever meet. Why? Because they have been born with a life-threatening inherited condition which leaves them fighting to breathe. CF primarily affects the lungs and the digestive system and becomes more severe with age. They are very susceptible to serious infection and as a result, they require frequent hospitalizations for treatment.

In other countries, CF in-patients are treated in single en-suite rooms to reduce the risk of cross-infection. In Ireland, adult CF sufferers risk potentially life-threatening infections every time they are admitted to hospital as we do not have a purpose-built unit in which to isolate them from other patients, as well as from each other. CF patients are not supposed to interact because of the risk of cross infection.

The plight of adult cystic fibrosis sufferers was laid bare on Liveline last week as outrage mounted about the appalling services provided for those affected. One CF patient after another and their relatives, described the appalling conditions to which they are subjected while waiting for a specialist unit to open at St. Vincent’s Hospital in Dublin, the national adult referral centre for CF patients in Ireland. A common thread to all the stories was that while CF patients are receiving excellent medical and nursing care at St. Vincent’s hospital, the conditions are far from ideal. They are being admitted to 6-bed wards where the nurses are not specifically trained in CF care and where they are exposed to cross-infection and constant exhaustion from being in a shared room. Rest and sleep are paramount when fighting a serious chest infection.

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 understaffed and dangerous. The Health Services Executive (HSE) responded by establishing a multidisciplinary Working Group to undertake a wide-ranging review of the current infrastructure for CF in Ireland. It took the Working Group until 2009 to publish it’s own Report on Services for People with Cystic Fibrosis in Ireland which simply endorsed many aspects of the Pollock Report.

Five long years have now passed since the conditions for CF patients were described as dangerously inadequate and very little has changed. Is it any wonder that they are demoralised about their plight and cynical about the many false promises from the HSE?

Following the public outcry last week, it was announced that building work on the long-delayed cystic fibrosis unit at St Vincent’s Hospital, is expected to start next Monday following the signing of the contract on Friday. The unit, which will be in a five-storey, 100-bed hospital block of which two storeys and 30-35 beds in individual ensuite units, will be developed exclusively for cystic fibrosis sufferers. It will be mid-2012 at least before the doors are opened. I won’t believe it until I see it happen.

Meanwhile, the wait goes on…

Further information:  The Cystic Fibrosis Association

You’ve been pinked!

I received a text message the other day which really made me stop and… think pink!

“Hello, pretty lady! You’ve been pinked. I consider you one of the 10 prettiest ladies I know. Please pass this message on and don’t forget  to TLC… touch, look and check!”

October is Breast Cancer Awareness Month. More than 3,000 women are diagnosed with breast cancer in Ireland each year and it is the most common cancer among women. Early detection provides the best possible chance of surviving the disease. Are you breast aware?

How can I be breast aware?

Breast awareness means becoming familiar with your breasts, how they look and feel at different times of the month. Try to get used to looking at and feeling your breasts regularly. By doing this you will be more able to notice any changes that aren’t usual for you. Use times like having a bath or shower to notice how your breasts look and feel. Running a soapy hand over your breasts and armpit helps you to feel the texture of your breast more easily. You may notice that your breasts change in size, shape or in how they feel at different times of the month. Your breasts may become lumpier or more tender around the time of your menstrual period, for example. As you become familiar with your breasts you’ll become more confident in knowing what is normal for you.

What are the changes to look for?

*  Any lumps, thickening or bumpy areas in the breast or armpit that seem different from other breast tissue. This is very important if it is new

*  Any changes in the size or shape of the breast (it may be normal for you to have one breast larger than the other)

*  Change to the nipple, such as crusting, ulceration, bleeding or a change in the direction or shape of the nipple

*  Veins that are standing out more than usual for you

*  Any puckering, dimpling or redness of the skin of the breast

The Breast Awareness 5-point Code:

*  Know what is normal for you

*  Know what changes to look and feel for

*  Look and feel

*  Report any changes to your doctor without delay

*  Attend routine breast screening if you are aged between 50 and 64

Please help get the message out there to women about the importance of being breast aware.

Information Source:  The Marie Keating Foundation

Incurable Optimist

Motor Neurone Disease (MND) is an incurable disease that leaves people unable to do everyday things that the rest of us take for granted. It is a progressive neurological condition affecting the central nervous system, leading to weakness and wasting of muscles, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing. The cause of MND is not known and there is no cure but treatments can help to ease symptoms and disability. Life expectancy is variable, from 3 to 5 years (or occasionally longer) after onset, depending on the activity of the disease and the particular muscle groups affected.

Artist and father of three, Patrick Joyce is an incurable optimist. Patrick has MND. He also has an infectious laugh, contagious enthusiasm and a wicked sense of humour. He has set himself a challenge to paint the portraits of 100 incurable optimists before he loses the ability to paint forever. Patrick hopes that through this people will be inspired to do something optimistic to help beat MND. He wants to raise awareness of MND and funds for research. MND is incurable, so is Patrick’s optimism…

You can read Patrick’s blog here.

Information Source:  The Irish Motor Neuron Disease Association (IMNDA) and The Motor Neurone Disease Association (UK).