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!

Medical Humour

The following alternative medical definitions of some common words come courtesy of The Washington Post:

Flabbergasted : appalled over how much weight you have gained.

Abdicate : to give up all hope of ever having a flat stomach.

Esplanade : to attempt an explanation while drunk.

Willy-nilly : impotent.

Coffee : the person upon whom one coughs.

Negligent : describes a condition in which you absent-mindedly answer the door in your nightgown.

Lymph : to walk with a lisp.

Gargoyle : olive-flavoured mouthwash.

Flatulence : emergency vehicle that picks you up after you are run over by a steamroller.

Balderdash : a rapidly receding hairline.

Testicle : a humorous question on an exam.

Rectitude : the formal, dignified bearing adopted by proctologists.

Circumvent : an opening in the front of boxer shorts worn by Jewish men.

Pokemon : a Rastafarian proctologist.

Joking apart… having put up a blog post yesterday (it’s been a while), I’ve been encouraged to update my personal journey as a patient.

I shall endeavour to put up a post by the end of the week… even if I have to stand up to type it. Watch this space!

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 Put Upons

Are you providing love, care and attention for an ageing parent? Do you get adequate support from your siblings or do you feel like a Put Upon?

Róisín Ingle is renowned for her ‘warts and all’ weekly column in The Irish Times magazine. Last weekend, she wrote about a subject which is very close to my heart. While it was sad to read, it sounded awfully familiar and left me feeling somewhat vindicated.

She told the story of one woman, Marion, who is providing the bulk of the day-to-day care for her ageing mother, with little or no help from her siblings. Marion is angry, feels taken for granted and wonders if others find themselves in a similar predicament. Read on…

Róisín Ingle on the Put Upons

“I REMEMBER YEARS ago, when Gay Byrne reigned supreme on RTÉ radio every morning instead of reigning supreme every Sunday on Lyric FM, him reading out a letter from a woman living, I think, on Ailesbury or Shrewsbury Road in Dublin, both of which streets live eternally purple in my mind on account of years spent staring at the Monopoly board.

I must have only been a teenager, but I’ve never forgotten her story.

The woman lived alone in a big house and the only time her children bothered to visit was Christmas Day. In the letter she told Gay that this year she’d prefer if they didn’t come. She couldn’t believe she had reared such an uncaring, thoughtless bunch of people. If she was alone, she reckoned, she may as well be fully alone on Christmas Day, the same as every other day. But she knew she would go through the charade, the house full of well-meaning visitors and cinnamon-scented cheer for at least part of this one day, their overburdened consciences eased for another year. She would shut the door and think about all the things she could never tell her children to their faces. So instead, as so many people did then, she told Gay.

She was an older woman then, I’m sure she’s long gone now but I thought about her the other day when I was in contact with a woman who calls herself one of the Put Upons.

That’s the term this woman, Marion, uses for the grown-up children who provides the bulk of the day-to-day love, care and attention for an ageing parent while the rest of the family do virtually nothing. Marion thought she was the only one with “selfish, uncaring” siblings until she started to talk to friends and discovered a wider community of Put Upons. But knowing she is not the only one doesn’t make it any easier.

Marion is in her 50s, working full time and angry. She thinks the main reason she is a Put Upon is because she lives the closest to her mother. In the beginning, when problems were smaller, it made sense for her to be the one taking action when any issues arose. But then her mother got older and Marion found herself in charge of making all the hospital appointments and bringing her to them and sorting out all the confusion over prescriptions. She does her mother’s shopping every week and brings bread and milk when she runs out, and sorts it when she has no batteries for the remote and organises a repair man for the telly or buys a new one if it’s really kaput. When she can’t do a particular thing, her husband and her children help out.

Oh, she knows there is a list of reasons as long as their arms why the other siblings can’t help out. They live abroad, or they are working, or they are on holidays, or they can’t afford the taxi fare to come and see her, or they have other members of extended family to care for, or they are just busy. Always busy. Too busy to agree to her requests for family meetings, or to come up with a rota so that the family can take turns making Sunday dinner. When their mother asks another sibling for help the reply is often “did you ask Marion?” She has become the de facto daughter. The default daughter. She feels like an only child and she feels taken for granted, as though her time isn’t as important as theirs.

I asked if she tells them how she feels, but she doesn’t, fearful that they won’t see her point of view and that it will cause ructions in the family. She also worries that they will tell their mother, which will make her feel like a burden – something she already suspects she is.

Marion would like her siblings to know a few things. That their mother spends far too much time alone and – look, it’s not rocket science – this means she is often lonely. One day Marion called to the house at 6pm and the lock was still on the door from the night before.

Their mother cries at night. Did they know? Their mother loves all her children and grandchildren, worries about them, talks constantly about their exploits. She longs for regular visits from them, something to look forward to. She wishes that when she rang and left them messages that they would be returned instead of ignored. Their mother is good and kind and, yes, needy but neediness, believes Marion, is not a crime in older age.

Why do Marion and the other Put Upons carry on as the default daughters or sons? “Because we love our parents. And we know we will have great memories, laughs and tender moments with them that the others lose out on.” In the end, the Put Upons win, she reckons. They have the “privilege” of supporting their older parents through their old age. They will bear no guilt when they go. And yet they also know how much richer their parents’ life would be if the others played their part.

As well as saying she’s a Put Upon, Marion also thinks she is a wimp for not wanting to rock the family boat. But she’s not a wimp. She’s a warrior for her mother. She just wishes there were others taking up arms in the name of unconditional love and battling together for the same cause.”

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I applaud Róisín Ingle for highlighting this difficult topic and for giving a voice to those who are quietly getting on with the job of looking after an ageing parent, with little help or acknowledgement from their siblings.

If this story resonates with you, I’d love to hear from you. As Marion says… we need to support one another in the name of unconditional love!

With thanks to Róisín Ingle and The Irish Times.

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! 😉