A Medical Puzzle

For as long as I can remember I’ve been told that I’ve been very ‘unlucky’. My medical history includes numerous joint injuries, recurrent sinus infections and multiple trips into hospital for surgery.

As a teenager I suffered intermittently from joint pain when participating in contact sports at school. X-rays results were always normal (MRI scans weren’t available in those days) so the cause of the pain was a bit of a mystery. On leaving school, I embarked on a career in physiotherapy but the joint problems followed me there. During my first year in college, I suffered numerous falls as a result of joints giving way unexpectedly and on one occasion I dislocated a shoulder, badly tearing the ligaments in the process. As a result, my shoulder tended to dislocate easily and surgery was recommended. An operation called a ‘Putti-Platt’ procedure was carried out to restrict my shoulder movements and prevent future dislocation. The recovery was a long haul with many set-backs along the way but eventually the pain my shoulder settled down.

During my college days I was also involved in a road traffic accident where I was knocked off a small motorbike and catapulted over the roof of a car. Luckily, no bones were broken but I sustained knee and groin ligament damage and months of rehabilitation followed surgery. There seemed to be no end to the string of bad luck. When the time came to enter my final year of physiotherapy training, I had successfully passed all academic exams but was unable to complete the practical aspects of the course due to continuing joint pain. I was advised to take a year out from training with a view to returning once I’d regained physical fitness. That was over thirty years ago and I never did get back to finishing the course. I did however succeed in discovering the underlying cause of all the joint problems.

By the time I reached my mid-thirties I was married with two children and my medical history  continued to grow. Even pregnancy had proved problematic. I suffered several miscarriages and spent three months on crutches during my last pregnancy due to lax pelvic ligaments. I also suffered recurrent sinus infections while pregnant which has left it’s legacy to this day.

When my youngest child was three years old, I was admitted to hospital for an operation to eliminate a recurrent frontal sinus infection. Unfortunately, the surgery nearly put an end to me as well. I finally left the hospital some six weeks later having experienced a very severe reaction to an antibiotic. I’d developed a condition known as pseudomembranous colitis which left me extremely ill and weak, and eventually it turned into an acute arthritis affecting each of my previously injured joints. When I was at my lowest ebb in hospital a renowned physician was consulted to sort out the problems. His expertise was exactly what was required as he succeeded where others had failed by finding the missing piece of the puzzle that was my medical history.

I was diagnosed with Ehlers-Danlos syndrome (EDS), Hypermobility Type, which is a genetic disorder that affects collagen structure and function. The abnormalities in the manufacturing of collagen within the body affect connective tissues, causing them to be abnormally weak. The symptoms of EDS include unstable, flexible joints with a painful tendency to dislocate and subluxate. This is due to ligaments which, because they are lacking proper collagen – the molecule that provides strength to ligaments – are overly stretchable. There is also a tendency to develop abnormal scar tissue following injury or surgery. The skin is another feature of EDS – it has a smooth, velvety texture and bruises easily. The severity of the condition varies from person to person and there is no known cure. Treatment is supportive.

At long last the mystery of my medical misadventures had been solved. It was a great relief to find out why I seemed to be ‘different’ to everyone else. However, I soon discovered that the condition is poorly understood and many doctors do not know how to take care of a patient with EDS. This can be very detrimental where surgery is concerned. I have continued over the years to require surgery on an on-going basis but I am always careful to ensure that the surgeon is aware of the problems associated with EDS. I’ve been very lucky to find an excellent physiotherapist who is extremely knowledgeable about EDS and she comes to my rescue when help is needed.

Regular controlled exercise is hugely important to stay on top of a condition like EDS. I have learnt techniques to improve muscle tone and avoid injuries. I cannot walk on a hard surface for any length of time without experiencing joint pain, so soft ground and good footwear are a must. One of the few benefits of EDS is that I have very clear, soft-looking skin. People often comment on how well I look which is a great bonus although it can be deceiving as well.

Those of you who have read my blog before now will know that in recent years I’ve had a serious battle on my hands with an MRSA infection and osteomyelitis following surgery for recurrent sinus problems. My life may not exactly have gone according to plan but it ain’t bad when all things are considered. My husband deserves a medal for putting up with so much over the years. He’s the real hero here.

Confused about MRSA?

Hardly a day passes without another MRSA story hitting the headlines. People are right to be concerned about this resistant superbug but sometimes the stories do not match the facts, and misunderstandings occur. I am no expert when it comes to talking about MRSA but I have learnt enough through my own experience of MRSA infection, to be able to share some facts with you.

So, what does it mean when someone says “I’ve got MRSA”?

This seems to be an area where much confusion exists. First of all, it should be clarified that a person can be either ‘colonised’ with or ‘infected’ by MRSA. People who are colonised usually have no symptoms but they still have the potential to pass on the bacteria by touch. Those who have an infection caused by MRSA are usually unwell and will require treatment.

MRSA Colonisation

The significance of being ‘colonised’ with MRSA is often poorly understood. Some people harbour the bacteria in their nostrils or on the surface of the skin without being aware that they are colonised, and they remain well. It is possible to pick it up on your skin by simply touching a contaminated surface or indeed from another person who is colonised but it will not cause harm unless it enters your system through microscopic breaks in the skin. When someone is found to be colonised it does not mean that they will automatically go on to develop an infection. As long as you are well there is no need to be unduly alarmed. You should remain extra vigilant for any unusual skin complaints or if you develop a high temperature and seek medical attention if in any doubt. You will be given instructions on how to de-colonise yourself with topical agents such as nasal ointment and bodywash/shampoo to eradicate nasal and skin carriage. It is important to remember however that a colonised person is a ‘carrier’ of MRSA and has the potential to colonise/infect others through contact. This is the reason why stringent infection control measures are required in hospitals as patients who are already ill, are at high risk of developing an MRSA infection. Many people are carriers without realising it and therefore it is really important that everyone takes the necessary precautions to prevent the spread of bacteria. Hospital visitors should observe good hand hygiene and use alcohol gel on their hands before and after visiting a patient. Ideally, hospital visiting should be kept to a minimum.

MRSA Infection

When somebody receives a diagnosis that they are ‘infected’ with MRSA they are usually already unwell. MRSA is not only restricted to hospital settings. Community-Acquired MRSA (CA-MRSA) is a rapidly emerging public health problem in the USA but it is rarely seen in Ireland. It causes pimples and boils and can infect wounds and grazes. A culture (swab) is required to determine the sensitivities of the bacteria and the duration of treatment will depend on severity of illness and clinical response. However the most prevalent form of MRSA seen in Ireland is Hospital-Acquired (HA-MRSA) infection. It thrives in hospitals where people are in close proximity and may have their defences already weakened by illness. Those who have had recent surgery or who are immuno-compromised are also at high risk of infection. The hospital environment also tends to be rife with multi-resistant bacteria as a result of the heavy use of antibiotics. The types of infections seen are wound infections, chest infections, bone infections or bloodstream infections and these have the potential to cause serious illness, or even death. Hospital acquired infections can be very difficult to treat and usually require long-term intra-venous treatment with a combination of antibiotics.

A reduction in antibiotic consumption levels, frequent and proper hand washing, and improved basic hygiene levels in hospitals are all essential to reduce the level of contamination. Hand hygiene is the single most effective defence against the spread of MRSA. This means that staff, patients and visitors alike all have a simple but important role to play in the fight against MRSA.

So, where did you ‘catch’ MRSA?

There is no doubt that many people are anxious to find out more information about MRSA (methicillin-resistant Staphylococcus aureus). Everyday when I turn on my computer I take a look at the search engine terms used to access my blog. It provides an interesting insight into the state of mind surrounding the whole debate on MRSA.

As you may already know from the blog, my name is Steph. When I first contracted an MRSA infection a few years ago, friends and family took pleasure in calling me ‘Staph’ because medics often refer to MRSA as a Staph infection. It always makes me laugh when I see that someone has typed in the keywords “Steph infections” or “superbug Steph” instead of Staph when searching the web for information on MRSA. There are plenty of things I’d like to be named after but a superbug is not one of them!

Another feature I come across with search engine terms is people looking for the source of their MRSA infection. The other day someone keyed in “MRSA infection caught at amusement park” and it started me thinking about why people have become so obsessed with finding out ‘how’ and ‘where’ they might have caught MRSA. I blame the litigious society we live in today. My MRSA was a hospital acquired infection (HCAI) which developed following surgery but the source of the infection has never been an issue for me. It’s a fact of life that MRSA is now widespread in Irish hospitals – the statistics for MRSA blood stream infections speak for the themselves – and so I think it’s important that the focus of attention is put on stopping the spread of infection. All hospitals have strict infection control protocols in place and doctors have been asked to prescribe less antibiotics as this is contributing to the spread of resistant bacteria. MRSA is also in the community at large. The bacteria can live on the skin and is found in the nose of about one-third of healthy people without causing them any problems – this is known as ‘colonisation’ – but healthy people are at low risk of becoming infected. It is hospital patients who are most at risk as they are more susceptible to the picking up infections. It really makes no sense to panic about possible sources of contamination. It’s up to all of us to play our part to stop the spread of MRSA infection. Good hygiene with regular hand washing is your best defence.

Susie Long deserved better

Our Minister for Health, Mary Harney has finally admitted today that the Health service failed Susie Long. She stated that Susie’s experience was “unacceptable”. Am I surprised to hear this now? Not one bit – this is exactly the sort of behaviour I’ve come to expect from our government.

I can only respond by saying that today is too late to make this admission – Susie died last Friday – and I find it very unacceptable that the government has waited until after her death to publicly admit to their failure. Susie did more good for our health service in one year than any Minister for Health has ever achieved. She turned her own personal tragedy into a force for positive change. At her cremation service this week her husband read a passage titled “Not how she died, but how she lived”. Susie believed in human rights and social justice for everyone and she firmly believed that queue jumping was wrong. Her untimely death was brought about by the failure of this government to provide an equitable health service for all. It’s too late for apologies. Susie deserved so much more.

Susie Long R.I.P.

I listened with profound sadness to news on the radio this morning that Susie Long (41) from Callan, Co. Kilkenny had died over the weekend. Susie was a brave, intelligent, articulate woman who was not afraid to speak out about the inequities in our health service today. She believed in social justice and was totally against the need for private health insurance and a 2-tier healthcare system. She was diagnosed with terminal bowel cancer in March 2006 having waited 7 months (following referral by her GP) for screening in the public health service. By the time she received her initial diagnosis it was already too late – her cancer was classified as terminal. Susie wrote an email to ‘Liveline’ in January this year to express her anger at the delays in the service. She used the pseudonym of ‘Rosie’ to protect her family from unwanted attention. Her subsequent interview with Joe Duffy on his radio programme ‘Liveline’ was incredibly moving and touched many people’s hearts. It was hugely successful in highlighting the failures in our health service and certainly did not go unnoticed by our Minister for Health. Susie spoke with great dignity and achieved more in that interview than most patient lobby groups could ever hope to achieve.

The important point here is that Susie was badly let-down by our healthcare system. Our government should hang their heads in shame for allowing the health service to deteriorate to the point where it fails patients. Susie advocated on behalf of all patients to bring about change in the system which had failed her. Her husband and children must be very proud of her – we all should be. One thing is certain, Susie will never be forgotten.

Susie was concerned that she may not have done enough to make a difference. She MADE A HUGE DIFFERENCE! Rest in peace, Susie.

HSE opens new piggy bank

The HSE has done it again. This time they have targeted the most vulnerable in our society – those who suffer from dementia.

In May 2005, the Minister for Health announced a scheme for repayment of all wrongfully charged maintenance charges in public long stay facilities. Any person with a medical card who had money deducted from their pension for long stay in-patient services would be entitled to a repayment. Special arrangements were put in place to protect those persons considered to be of ‘unsound’ mind. The HSE assured all relatives of such patients that they would make the claim on behalf of the patient so that the repayment could be lodged to the patient’s private property (PPP) account at the long stay facility where they reside.

My elderly mother has been a resident in a public long-stay nursing home for some time now and was one of those people subjected to the illegal maintenance charges by the HSE. She is wheelchair bound and a victim of Alzheimer’s disease and is considered non compos mentis in terms of her capacity to manage her funds. Some years ago, when it became obvious that my mother was showing signs of developing dementia, my family were advised to activate an enduring power of attorney to protect her affairs in the future. This was duly executed and I am jointly authorised along with another member of the family, to make decisions on my mother’s behalf. My mother holds a PPP account at the nursing home, into which her state pension is paid and the home now legally deducts a charge each week (on behalf of the HSE) from this account towards the cost of my mother’s care. The nursing home also deducts money from this account as required to cover the personal day to day expenses incurred by my mother. This system has worked well over the years and the family have been more than happy to allow the nursing home to manage this account. However when the question arose of making a claim from the Health Repayment Scheme, the family were advised by the nursing home that they had been specifically requested by the HSE to complete the claim forms on behalf of patients who “do not have sufficient capacity themselves to make an application”. We were told by the HSE that the value of the claim would be paid into our mother’s PPP account at the home where it would be held in safe keeping to cover any future expenses incurred by her. Following this reassurance, the family agreed to authorise the nursing home to proceed with making a claim on behalf of our mother.

Last Friday I received a letter from the nursing home stating that my mother’s claim had been successful. However there was also some further explanatory information from the HSE, attached to the letter. This was to inform me (for the first time) that my mother now has two PPP accounts – one managed locally and one managed centrally. Her existing pension fund at the nursing home has been re-named a Local PPP account. The HSE repayment due to my mother has been lodged into a new Central Patient Private Property account, opened by the HSE in my mother’s name. This new form of PPP account is to be managed by the HSE from a central office established in Tullamore. I was informed that the Health Service Executive had invested the re-paid money into this new account on my mother’s behalf to “allow her to earn interest on it”. I’m not really sure what to make of all of this but I do know when I smell a rat. I question the motives of the HSE in opening a new office purely to manage money belonging to pensioners? I didn’t authorise them to open an account there on my mother’s behalf and anyway, why are they only informing me of this now? I’m not so stupid as to think that the HSE really has my mother’s interests at heart. Frankly, the tactics already being used by the HSE to balance their overspent budgets, are enough to make me doubt their intentions even further. Am I right to be so suspicious?

Be Breast Aware

October is Breast Cancer Awareness Month. This is a worldwide campaign to increase awareness of breast cancer and to support people affected by the disease. It also helps to raise funds for research into the disease. Yesterday I received a very personal reminder about the importance of being breast aware. An old friend phoned to break the sad news that she has been diagnosed with breast cancer. A breast lump was detected by her GP at a routine check-up and a lumpectomy (surgical removal of the lump) subsequently confirmed it’s malignancy. My friend is now awaiting a full mastectomy with follow-up chemotherapy and radiotherapy planned. I was gutted to hear this news.

Breast cancer is the second most common cause of cancer in Irish women after non-melanoma skin cancer, and the most common cause of cancer death in Irish women. In Ireland, more than 2,370 new cases of breast cancer were diagnosed in 2005, with 75 per cent of all breast cancer cases seen in women over the age of 50 years and 37 per cent in women over the age of 65. Breast cancer occurs mainly in women but occasionally occurs in men. Many people do not realize that men have breast tissue and that they too can develop breast cancer. The biggest risk factor however, apart from being female, is increasing age. Other risk factors include having an early menstruation or late menopause, not having had children or having a first child after the age of 30 and having a family history of breast cancer. On a more positive note, more women than ever before are surviving breast cancer and huge advances in medical care have meant that more people are able to live with cancer.

Breast awareness is about encouraging women to become more aware of their bodies generally and to get to know their own breasts. This is an important issue for all women in their mid-twenties and onwards, as learning how their breasts look and feel at different times will help women know what is normal for them and to recognise any irregular changes.

The breast awareness 5-point code is:

1. Know what is normal for you

2. Look and feel

3. Know what changes to look for

• size – if one breast becomes larger, or lower
• nipples – if a nipple becomes inverted (pulled in) or changes position or shape
• rashes – on or around the nipple
• discharge – from one or both nipples
• skin changes – puckering or dimpling
• swelling – under the armpit or around the collarbone (where the lymph nodes are)
• pain – continuous, in one part of the breast or armpit
• lump or thickening – different to the rest of the breast tissue.

4. Report any changes to your GP without delay

5. Attend for breast screening if aged 50 or over

BreastCheck, the National Breast Screening Programme, is a free health service which aims to reduce deaths from breast cancer by finding and treating the disease early. Early detection is a key to survival. The service invites women aged 50-64 for a free breast x-ray every two years. BreastCheck is currently available in the North East, East, Midlands and South East of the country and is in the process of expanding the service nationwide. Anyone who would like further information about breast cancer can contact the Irish Cancer Society Action Breast Cancer. Their services are free, confidential and accessible and include a national helpline, publications, one-to-one support, breast awareness talks, and advocacy.

My friend was due to have her mastectomy today pending the availability of a bed. Her diagnosis has already turned her life upside-down. That wonderful sense of certainty and expectation of continued life and health, has been destroyed. I feel I owe her a huge debt of gratitude for giving me a wake-up call to be more breast aware. She faces a tough road ahead. May the force be with her.