Progress of Sorts

Where did we get to? Oh yes, I remember… I was in ‘yellowland‘ having the nasal prosthesis removed under sedation. That’s just over a year ago now and I guess you’d like to know how my head has been in the interim? Here goes…

When I returned to see the surgeon for a check-up, it was lovely to be able to report that I’d had no headaches or active infection since the prosthesis had been removed. However, I also had to report that the healing of my nasal septum had broken down again and this was confirmed on examination. We both looked at each other in disbelief. What to do next?

I was given two options… return to Nottingham for advice or do nothing and see what happens. I chose the latter as I couldn’t stomach the thought of any further intervention. A month later, I went to discuss the situation with my GP. I wanted to find out if there could be an immunological explanation for my long history of infection and failure to heal. My GP agreed to run some blood tests.

A month later, when I was in the throes of a bad flare-up of infection in my head, my GP phoned with the blood results. I did indeed have a ‘blip’ in my immune response which was considered worthy of further investigation. A letter of referral was sent to the local hospital requesting an appointment with the immunology team. I expected to wait months for this appointment within the public system but within a week, I’d been called into the hospital to undergo a rigorous assessment of my immune system. When I queried why I’d been seen so quickly, I was told that I was a “fascinating” case and as a result, I’d been bumped up the waiting list. My hopes were raised.

Three hours and many blood tests later, I left the hospital having been thoroughly grilled on every aspect of my medical history… and also examined from top to toe. I couldn’t believe the thoroughness of the assessment. Following the blood tests, I was injected with the pneumococcal vaccine, started on a long-term prophylactic dose of antibiotic, two new inhalers (one oral, one nasal) were added to my prescription and I was given a date to return for pulmonary function tests.

When I returned to the hospital three months later for all the test results, I had high hopes of receiving news of a breakthrough. The appointment turned out to be a complete anticlimax. I didn’t get to see the consultant as had been promised. Instead, I was told by a seemingly bored, doctor that the blood tests confirmed a minor defect in my immune system… no IgM factor… and that there’s “no treatment available for it”. The tests had also confirmed my allergic status, asthma etc. and I was simply told “Keep taking the pills and come back in a year’s time for review.” Hopes dashed again.

The good news is… since undergoing the original immune assessment, I’ve only had one acute infection in my head since last June and I’ve also had fewer headaches. This is an all-time record! I’m convinced this progress is due to the continuous prophylactic dose of antibiotic. In the past, I’ve been on antibiotics for months at a time but never, for a year at a time. It’s seems such a simple solution and apparently, can be continued indefinitely. The question is… why didn’t someone think of this before?

So… progress of sorts. My nasal septum has still not healed and I’m due a check-up with the surgeon next month.

Tune in next week and I’ll tell you about my tooth extraction which… wait for it… failed to heal!

Use it or Lose It!

When it comes to protecting the brain, it’s thought that certain lifestyle factors may help your brain to stay healthy. Neuroscientists suggest that by keeping your mind active, taking exercise and maintaining social interactions, you can help to reduce your risk of developing dementia.

The brain is a learning machine. To keep it strong, you must continually develop new skills. In other words… keep pushing those boundaries!

Here are seven ways to keep your brain active and healthy as outlined by Prof Ian Robertson, Professor of  Psychology at Trinity College, Dublin…

1. Physical Fitness: Take aerobic exercise… exercise that gets your pulse racing a bit. Fast walking for 20-30 mins a day, is good for your brain and your heart. If you’re not used to taking regular exercise, get checked out by your doctor first. 

2. Mental stimulation: Do something new and engaging… maybe volunteering. Find something you love doing. Engage with other people. This is a critical protective factor.

3. New learning: We get lazy as we get older. We should all be constantly learning. Learn a language/learn to sing/improve your computer skills.

4. Reduce stress: A bit of stress is not a bad thing. Challenge is good for us… pushing the boundaries. However, prolonged and severe stress is detrimental to brain function. Find a method to reduce stress… music/self-help books/yoga/meditation/relaxation.

5. Keep socially active: The denser a person’s social network, the less likely they are to be diagnosed with Alzheimer’s disease. Other people are a source of enrichment of the brain. Maintain social contacts.

6. Eat a healthy diet: What’s good for your heart is good for your brain. Eat fish (omega 3)/veg/fruits (richly coloured) and keep to a low saturated fat diet.

7. Think and behave young: How you behave and act, feeds back into your brain and changes it. Don’t adopt the behaviours of being old… stooped posture etc. Stand upright and think and behave younger than you are.

You can listen back to *Marian Finucane’s interview with Prof Ian Robertson here.

*Marian Finucane… RTE Radio 1, Saturday/Sunday 11-1pm… live stimulating mix of news, interviews, reports and discussion.

The fight against MRSA

I spotted this article yesterday in the Irish Times and felt compelled to share it. It’s a new step in the fight against MRSA…

New research has found that as the superbug MRSA resists antibiotics, it becomes less virulent. 

CLAIRE O’CONNELL

LIFE IS full of trade-offs, and it seems the hospital-acquired “superbug” MRSA is no exception. A new study led by Irish scientists has discovered that when the bacterium acquires resistance to antibiotics, it becomes less virulent, at least in a lab model.

The finding could help shed light on why patients who have compromised immune systems are particularly vulnerable to healthcare-associated MRSA infections.

MRSA develops when a bacterium called Staphylococcus aureus (SA) acquires resistance to a number of antibiotics and becomes methicillin-resistant Staphylococcus aureus (MRSA).

The new study, just published in the open-access journal PLoS Pathogens, looked at SA and MRSA infections associated with medical devices that are surgically implanted in a laboratory model, explains lead author Dr Jim O’Gara from UCD’s Conway Institute.

“Bacteria are naturally present on the skin, where they often don’t cause any problem. But if they stick onto medical devices that are put into the body they can get access through the skin’s barrier and then they can potentially establish an infection,” he says.

“They will form biofilms, which are communities of bacteria attached to the medical device, and those biofilms are almost indestructible. In that case you have to take the device out and put in a new one, which is not always a trivial thing for the patient.”

O’Gara and a colleague at Beaumont Hospital noticed several years ago that SA and MRSA biofilms looked different.

“Our early research in this area revealed a hugely surprising result – that MRSA and SA use different ways of forming biofilms,” says O’Gara.

Their discovery was that SA bacterial cells use sugars to stick to each other and to surfaces as biofilms, while MRSA instead use proteins to form biofilms.

With funding from the Health Research Board, his group brought the project further and looked at the effects of turning SA into MRSA in the lab. They used a preclinical model that introduced infection by allowing the bacteria to form biofilms on implanted medical devices.

Again, the results far exceeded their expectations: when SA became resistant to the antibiotic methicillin (and so became MRSA), its ability to cause illness was toned down.

“What the data show is that if you take SA and you make it resistant to methicillin, you change the way it forms biofilms, but you also make it less virulent in a preclinical model,” says Dr O’Gara, whose group at UCD worked on the project with colleagues at the University of Bath, Harvard Medical School and the University of Nebraska.

“It’s like the bacteria are making a decision to divert their energy towards becoming resistant to the drugs, and they are not going to expend energy producing as many toxins or enzymes.”

In essence, the findings suggest that hospital-acquired MRSA may have have adapted to the hospital environment by sacrificing virulence for antibiotic resistance, according to O’Gara.

“This trade-off works for the pathogen because patients in hospital, particularly in an intensive care setting, can be very immuno-compromised and the pathogen does not need to be very virulent,” he says. “On the other hand, the bacterium does need to be very antibiotic resistant, due to the necessarily high levels of antibiotic usage in intensive care units.”

O’Gara is now looking into how the discovery could be used to help make MRSA less nasty for patients who get infected. “It may open up new ways to find anti-virulence drugs,” he says.

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This article makes great sense to me as it goes some way to explain why my sinuses are chronically infected with MRSA yet I’m otherwise well. It also explains why I’ve had problems over the years with medical implants which have had to be removed having become contaminated with MRSA.

The question is… how the hell do you get rid of MRSA once and for all?

Source: Irish Times HEALTHplus magazine

Yellowland

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!

Super Pillow

I’ve always had a ‘thing’ about bringing my own pillow (if possible) whenever I overnight away from home. And, that includes when I’m admitted to hospital… my non-allergenic, frequently washed pillow comes too plus a supply of my own pillowslips.

Why? There are lots of reasons why but chief amongst them is hygiene. I’ve never liked the idea of burying my head in someone else’s pillow. The crisp, white pillowslips found on hospital/hotel pillows, do not reassure me. According to an article in yesterday’s paper, my reservations are well-justified…

A recent clinical trial carried out by Bart’s Hospital and the London NHS Trust, concluded that the risk of infection from bedding is “grossly underestimated”. “Dead skin, bodily fluids and dandruff found on hospital pillows made them a potential source of more than 30 types of infection”. Read on… if you dare!

Pillow aims to halt the spread of superbugs

Carol Ryan

AN IRISH company has invented a pillow that may help to reduce the risk of picking up a hospital-acquired infection (HAI) such as MRSA from lying on contaminated bedding.

Gabriel Scientific’s “SleepAngel” pillow was the subject of a clinical trial by Barts and the London NHS Trust, which found its product to be more hygienic than regular hospital pillows.

Several international studies have found that hospital bedding can harbour bacteria if they become contaminated with the bodily fluids of a patient who has an infection.

While regular washing is a standard infection-control measure in all Irish hospitals, the Barts study concluded that the risk of infection from bedding is “grossly underestimated in clinical practice”, and that regular cleaning may not be enough.

The inventors of the SleepAngel pillow, Billy Navan and David Woolfsen, both worked in the health industry and saw the problems caused by superbugs in Irish hospitals. They thought the risk of infection from pillows was being overlooked in hospital hygiene policies and spent nine years creating their infection-control pillow.

Most of that time was spent searching for a material that could keep germs out of the interior stuffing while still allowing the pillow to “breathe”. A membrane normally used in heart stents was incorporated into a specially designed filter.

During the Barts study, their product was put to work alongside standard NHS pillows in UK hospital wards. Both were used on cardiac, vascular and respiratory wards and tested after three months.

The results showed high levels of contamination in the standard pillows. Some had bacteria levels which were described by Dr Arthur Tucker, who led the study, as a “bio-hazard”. Dead skin, bodily fluids and dandruff found on the pillows made them a potential source of more than 30 types of infection ranging from flu to leprosy. The SleepAngel pillows tested negative for interior contamination and were much less likely to have bacteria on the outside.

There was also some unpleasant news about domestic pillows – apparently you are never alone in bed because after two years of use, one-third of a pillow’s weight is made up of dust mites, dead skin and bacteria.

Infection control has become a big challenge for hospitals in recent decades. Dr Brian O’Connell, medical director at the National MRSA Reference Laboratory in St James’s Hospital, explained that the superbug problem first surfaced in Ireland during the 1980s and quickly became “endemic” in some hospitals. Rates of infection have declined in the past few years but cross-infection still creates a huge extra workload for hospital staff and puts patients at risk.

Of real concern is stopping the spread of MRSA, a strain of the common Staphlococcus aureus bacteria that has developed resistance to antibiotics, making it difficult to treat. If the bacteria gets into the system through a break in the skin it can cause infections but, in more serious cases, can lead to life-threatening diseases.

The HSE Infection Control Action Plan estimates that about 25,000 in- patients develop a HAI every year in Ireland.

The cost of treating and preventing HAIs is €23 million per year and about one-third of infections are thought to be preventable.

Source: HEALTHplus – The Irish Times

Six Feet Tall

I’m heading over to Nottingham today to have the nasal prosthesis fitted under general anaesthetic tomorrow.

I just hope I don’t end up looking like this…

Apologies for the lack of communication. Life is far from easy at the moment but I’m determined to stay standing… roughly six feet tall!

 

Having a nose job

No… I’m not a celebrity. There’ll be no before and after pics although somewhere in the annals of medical literature, Steph’s skull will be recorded in 3D. Many people choose to undergo “a nose job” to enhance their looks. I’m about to have a nose job with a difference! 

The nasal septum is the vertical wall in the middle of the nose that separates the right and left nasal cavities. This wall extends back to the end of the nasal cavity and is made up of cartilage at the front and thin bone at the back. The main functions of the nasal septum are structural support for the nose and regulation of air flow in the nasal passages.

When I had the graft surgery in Nottingham last year, one side of my nasal septum was harvested and used to cover an area of bone within my skull which had been left exposed following previous surgery. The graft tissue healed well in it’s new location but unfortunately, the donor site (my septum) has failed to heal properly and continues to be symptomatic. This failure to heal is rarely seen and is thought to be due to the fact that I’ve an underlying connective tissue disorder, called Ehlers-Danlos syndrome (EDS). My surgeon in Notts has been scratching his head to find a solution to the problem.

Nasal splinting has already been tried and failed. Topical antibiotic ointment has failed. Daily hypertonic sinus rinse-outs (with the addition of baby shampoo) have failed. We even tried occluding the air flow on that side of my nose, using a prosthetic ‘bung’ but nothing has succeeded in getting my septum to heal. I travelled over to Notts recently to discuss what options are left… if any.

At the consultation, it was quickly spelt out to me that we are now in ground-breaking territory in terms of finding a solution. The first surgical option proposed by my surgeon, sounded too invasive for my liking so I asked him to think again. We discussed various other options all of which were ruled out because of my failure to heal. It was then that my surgeon had the brainwave to adapt another tried and tested surgical procedure, to suit my needs.

There is a condition known as a perforated nasal septum. This is basically a hole in the nasal septum which can be caused by nasal surgery, cautery, physical injury or cocaine use. Now, I’m not a cocaine snorter but I do have a large perforation (surgical opening) in the bony posterior area of my septum as a result of previous surgery to improve the drainage from my frontal sinuses. Sometimes, a nasal septal button is used to close an anterior septal perforation. While my perforation is asymptomatic, my surgeon has come up with the novel idea of adapting the button procedure to suit my unique anatomy and thereby solve the problem with my anterior septum.

He’s going to have a nasal septal prosthesis custom-made to fit through the surgical opening at the top of my septum and which will completely encase both sides of my septum with silicone. A 3D model of my skull will first be made from recent scans so that the prosthesis can be made-to-measure in advance of surgery. All that’s required of me, is to turn up and have the thing fitted under general anaesthetic.

I told you I was having a nose job!

Let Patients Help

Are you an e-Patient? The most under-utilised resource in all of healthcare, is the patient. Patients need to be allowed to take part in their own healthcare. e-Patients are equipped, engaged empowered and enabled.

Some of you may be familiar with TED.com. TED is a non-profit organisation devoted to “ideas worth spreading”. It started as a conference bringing together people from the worlds of technology, entertainment and design. As well as running conferences, it delivers riveting talks by remarkable people, free to the world. These talks are well worth dipping into for inspiration and thought-provoking perspectives.

Here’s one I really enjoyed… Meet e-Patient Dave.

Thanks to Ann @ Transplant News for alerting me to the above talk.

Tune in next week for an update on e-Patient Steph! 😉

Take the MRSA Test

How much do you know about MRSA?

I challenge you to take the quiz here and test your knowledge of this resistant bacteria.

The quiz only takes a few minutes to complete.

I’d love to hear how you got on.

Source: MedicineNet.com

I’m fine, how are you?

Tonight is census night in Ireland when an estimated 2 million census forms – one for every household in the country – will be filled in. Two new questions have been added to this year’s form from the previous census carried out in 2006. One of the new questions deals with how healthy you feel you are. Most of the questions are multiple choice and in the section on health, you are asked “How is your health in general?” with an option of five boxes to tick, ranging from… very good to very bad. This question poses a dilemma for me…

I was out to dinner with a group of friends last night and during the evening, the topic of the census form came up. When I mentioned that we would all be faced with a new question about our health, one of my closest friends leaned over and said, “Steph, I hope you tell them how bad your health really is”. I was quite taken aback by this remark as despite living with a chronic illness and being an ‘expert by experience’ patient, I’ve never really thought of myself as having bad health. I’ve always regarded episodes of illness/injury simply as obstacles to be overcome so that ‘normal’ life can be resumed. Admittedly, I’ve had rather a lot of so-called “episodes” but even so, it’s still come as a bit of a shock to realize that others may regard my health as being bad.

Over the years, whenever someone has asked me how I am, I much prefer to reply that “I’m fine” rather than have to watch their eyes glaze over with boredom while I detail my latest woe. Those who want to hear more, will usually dig a bit deeper for it and then I’m perfectly happy to oblige. After last night’s conversation, I’m now wondering… am I right to be so positive about my health or am I actually in denial?

I came across this rhyme recently and loved it so much, I want to share it with you today…

There’s nothing the matter with me,
I’m just as healthy as can be.
I have arthritis in both knees,
And when I talk, I talk with a wheeze.
My pulse is weak, my blood is thin,
But I’m awfully well for the shape I’m in.

All my teeth have had to come out,
And my diet I hate to think about.
I’m overweight and I can’t get thin,
But I’m awfully well for the shape I’m in.

Sleep is denied me night after night,
But every morning I find I’m all right.
My memory’s failing, my head’s in a spin,
But I’m awfully well for the shape I’m in.

Old age is golden I’ve heard it said,
But sometimes I wonder, as I go to bed.
With my ears in a drawer, my teeth in a cup,
And my glasses on a shelf, until I get up.
And when sleep dims my eyes, I say to myself,
Is there anything else I should lay on the shelf?

The reason I know my youth has been spent,
Is my ‘get-up and go’ has got-up and went!
But really I don’t mind when I think with a grin,
Of all the grand places my get-up has been.

I get up each morning and dust off my wits,
Pick up the paper and read the ‘obits’.
If my name is missing, I know I’m not dead,
So I eat a good breakfast and go back to bed.

The moral of this as the tale unfolds,
Is that for you and me, who are growing old.
It is better to say “I’m fine” with a grin,
Than to let people know the shape we are in.

(Source unknown)