Memories

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!

Where did you get that hat?

In March 2007, I underwent an extremely rare operation in a specialist surgical unit in Nottingham. A Riedel’s procedure is an operation of last resort and is only used in patients where all other surgical treatments have failed. The procedure causes a cosmetic defect in the forehead but reconstruction can be done at a later stage if necessary.

This first picture was taken to mark my safe return from the operating theatre. During the surgery my head was opened from ear to ear via a zig-zag coronal incision and my ‘face’ was peeled back to the bridge of my nose, to expose the front of my skull. The diseased anterior wall and floor of both frontal sinuses was cut away leaving behind a large hollow in my forehead. The edges of this bony hollow were then ‘chamfered’ (planed) to make a gentle curve so that the soft tissue of my face could fall in and line the hollow area.

My ‘face’ was then put back where it belongs and the coronal incision was stapled together before a pressure bandage was applied with a drain in place to minimise haematoma formation. Ten days later, the staples (all 59 of them) were removed from my scalp and I was well on the way to making a good recovery. I’ll never forget how good it felt to be able to wash my hair again.

The pictures below document my recovery following this operation. My return home from hospital in April of that year happily coincided with the early arrival of summer so I got to enjoy a whole month of lazing around in the sunshine. The sun proved to be a perfect tonic and quickly dried up the pressure sores on my forehead.

In the last year, I’ve had two further operations on my head in Nottingham plus extensive IV antibiotic therapy to eradicate a bone infection. The final photograph shows how my face looks today now that all the swelling has finally subsided. Reconstructive surgery is available to improve the contours of my forehead but having recently discussed the options with my surgeon, I’ve decided not to proceed.

I’m more than happy to leave well alone.

Up close and personal

I was asked recently if I’d ever posted any pictures on this blog to document the problems I’ve had with my head over the years. The answer is, no but it started me thinking that perhaps it’s time I should. Words can only convey so much of a story whereas pictures say so much more. So, thank you Alhi for giving me the push that was needed!

My story goes back a long way as I’ve had multiple surgeries on my head as a result of having chronic sinus infections for most of my adult life. About 5 years ago, a decision was taken to insert a stent close to the base of my brain, to drain a recurring abscess in the right frontal sinus. It was at this stage that my husband decided to record my surgical journey with a series of ‘up close and personal’ photographs. Little did we know then of the battle that lay ahead.

This first photograph was taken in 2005, several days after the operation to have the stent inserted in my head. The incision follows the contour of my eye socket and is continued through the eyebrow for maximum disguise. This operation was actually the fifth time this incision had been used to access the right side of my forehead. All previous access had been gained through my nose or upper jaw.

The second photograph was taken 3 weeks later while I was still recuperating from the surgery. I was actually on a sailing holiday at the time when I developed severe headaches and my eyes and forehead started to swell. I knew something serious was going on but I didn’t know what so we made haste back to the hospital. This photograph marks the beginning of my journey with MRSA.

This last photograph was taken following my treatment for the orbital cellulitis. Once the MRSA wound infection had been diagnosed, the stent had to be removed from my head and it took several courses of intensive IV antibiotic treatment, administered over a 3 month period before I was finally discharged from the hospital. I’ve included this picture as it shows how well the incision healed despite the setback.

Less than a year later, the MRSA infection recurred and resulted in the development of chronic osteomyelitis in the frontal bone of my head. Further extensive surgery and treatment has been required in the meantime but I’m going to save those pictures for another day.

KOKO

I said I’d come back and let you know how my head is faring. Sorry to keep you waiting. I’ve been busy trying to keep on, keeping on!

As you know, I had a fairly easy post-operative phase before the internal splinting was taken out of my head last week. I mistakenly thought that  I was over the worst. How wrong I was. My head felt very raw and painful once the splints came out and especially the side of the nasal septum where the tissue was taken for the graft.  I was also struggling with the return of the chest infection I’d had in the week leading up to surgery. As each day passed, my head got progressively sorer and a horrible facial neuralgia developed. I knew something wasn’t right as I was reaching for pain relief on an increasing (instead of a decreasing) basis so I requested an appointment with the referring surgeon.

I was seen in the hospital two days ago and the surgeon had a good look around the inside of my head. He spotted the problem within seconds. Since having the splints removed a week earlier, my head had been seeping blood internally and despite daily wash-outs, this crud had congealed causing pressure on surrounding structures. He spent about 30 minutes working on my head with surgical instruments before hoovering up all the debris. A final inspection brought the very good news that the graft is healing well with no sign of rejection. I left the hospital with a definite bounce in my step and I’ve not looked back since. Next stop is Nottingham in a month’s time for what I hope will be, a final review.

You may be wondering what the title of this blog post is about. Some time ago, I received a comment on my blog from a new visitor who was delighted to find my personal story. You see Alex has been on an uncannily similar journey to my own with years of fighting infection in her forehead, multiple surgeries, hospital-acquired infections, osteomyelitis and long-term IV antibiotic treatment. She too lives with a hidden disability except for the large dent in her forehead. Alex recently started her own blog called Bugs Drugs and Rock n Roll, to document her journey. It was Alex who taught me about KOKO. When you live with a chronic condition, you soon learn how to keep on, keeping on.

Original of the Species

I recently wrote about a crisis point when I came close to losing hope of winning the battle against a serious infection. I’d been re-admitted to hospital having developed complications at home following specialised surgery in the UK. It was a tough time but I never expected the outcome that followed…

Osteomyelitis, an infection of bone, was raging inside my skull and was failing to respond to a combination of IV antibiotics. I was considered at high risk of developing cavernous sinus thrombosis, meningitis, intra-cranial infection or septicaemia, all potentially fatal conditions. My eyesight was also under serious threat. When my condition deteriorated further, it was decided that I should be taken to the operating theatre to have multiple bone biopsies taken for analysis. On waking from the anaesthetic, I was informed that osteomyelitis had been confirmed and that a new regime of IV antibiotics would be commenced. Within hours of starting the new treatment, I’d turned the corner and was out of danger.

When the surgical team arrived at my bedside the following morning, they were beaming from ear to ear. The senior registrar turned to me and said, “You do realise that you’re famous, don’t you”? I looked at him in puzzlement. He told me that when my head was examined in theatre, it had caused enormous excitement. The pioneering surgery carried out in the UK, had proved fascinating to the Irish surgeons. The internal anatomy of my skull has been so radically altered, I’ve become an original of the species. It seems I’m now regarded as a rare medical specimen. Thankfully, an alive one!

Next week, I’ll tell you about how I became a ‘film star’ for a day.

It’s a Bug’s Life

I had an infection in my head recently which recurred repeatedly despite treatment with antibiotics. An antibiotic called Suprax finally knocked the infection into submission. Unfortunately, it also knocked the lining of my large intestine into submission. Since finishing the antibiotic just over three weeks ago, I have suffered from intermittent colitis. For those who don’t know what the symptoms of colitis are, I’ll spare you the details. Suffice to say, I’ve spent a lot of time in the bathroom in the last few weeks.

Diarrhoea is a common side-effect of antibiotic treatment. When I consulted my GP with worsening symptoms a week after stopping the Suprax, he suspected that I may have developed an infection known as Clostridium difficile. This highly contagious bacterial infection of the bowel can occur following antibiotic treatment but laboratory tests last week ruled it out. Or so we thought.

I was given medication to quell the increasing nausea but over the Easter weekend, the pain in my intestines worsened and I was forced to seek medical help again. This time the hospital came back saying that the antibiotic-associated colitis must be urgently treated. There are two antibiotics used to treat C. Diff and associated infections, called Flagyl and Vancomycin.  I had a severe reaction to Flagyl many years ago and as I am considered high-risk because of a previous history of pseudomembranous colitis, I have been prescribed the drug of “last resort”, Vancomycin.

Vancomycin is normally given intravenously for the treatment of serious, life-threatening infections such as MRSA but it can also be used to treat colitis. When taken orally, the drug does not cross through the intestinal lining and remains in the intestines. As this is exactly where it’s needed at the moment, it is the drug of choice. Fingers crossed please!

In the meantime, tests results have suggested that chronic osteomyelitis is recurring in the bone around my eye. I am presently awaiting an appointment to return to the specialist unit in the UK, for assessment. The bugs go marching on.

Not MRSA again!

It’s been a strange week after all the excitement of the blog awards. I’ve got a swollen head but for all the wrong reasons. My right eye started to swell on Sunday evening shortly after my arrival home from Cork. I wasn’t unduly worried as this has happened before following a flight and anyway, I was covered by an antibiotic  following a recent infection in my head. By Monday the swelling hadn’t subsided and the pressure behind my eye was growing worse. I also felt rotten and had pus oozing down the back of my throat. On Tuesday morning, I sought urgent help and was lucky to get an appointment to see my surgeon at the hospital. He took a swab of the pus and did his best to reassure me but we both knew that with my previous history, there was real cause for concern. My biggest fear was a return of the superbug, MRSA but it would take another 48 hours before my destiny was known.

This afternoon I had some good news.  I have an MSSA (methicillin sensitive Staph aureus) infection, not it’s resistant relative, MRSA. This is really welcome news as it extends my treatment options. Had it been MRSA again, I might well have been faced with many weeks of IV treatment in hospital due to antibiotic resistance. I was started on a new antibiotic last Tuesday but worryingly, it hasn’t kicked-in as yet.  My eye remains swollen and my head still hurts but I’m feeling good.

You see, in the midst of all my woes, I received a lovely surprise from Absolute Vanilla and it’s really boosted my spirits. AV is a highly creative writer, a hugely talented photographer and a very popular blogger so I’m honoured to receive this award from her.

BEST BLOG THINKER AWARD

To Steph of  The Biopsy Report who has written tirelessly and courageously about illness and the Irish health system.

“This award acknowledges the values that every Blogger displays in their effort to transmit cultural, ethical, literary, and personal values with each message they write. Awards like this have been created with the intention of promoting community among Bloggers. It`s a way to show appreciation and gratitude for work that adds value to the Web.”

This beautifully timed award has worked far better than any antibiotic. I wear it with pride. Dankie! AV.

Rapid MRSA Identification

Ireland is one of only three countries in Europe where antibiotic prescribing outside of hospitals, is on the rise. Antibiotics are frequently taken for viral colds and flu, when in fact they are only effective against bacterial infections. The more frequently antibiotics are used, the more resistant forms of bacteria become to them. The HSE recently launched a national education programme to change prescribing patterns in a bid to curb the use of antibiotics. The level of superbugs like MRSA and C. difficile in our hospitals would fall if antibiotic use was reduced. However, there’s another side to the superbug problem in our hospitals which I believe, has been overlooked.

When I developed serious symptoms of infection some years ago, it took three days for a nasal swab report to come through from the laboratory. In the meantime, I was treated in a ward shared with four other patients, two of whom were recovering from surgery. When my positive MRSA status emerged, I was quickly moved out of the ward and into isolation. You have to wonder at how many patients were cross-infected as a result of this delay in diagnosis. Multiply this by the huge number of MRSA cases passing through our hospitals each year and you get some idea of the scale of cross-infection.

The sad fact is that there is a Rapid MRSA test available which gives same-day results but it appears that the HSE restriction on budgets has ruled out it’s use in Irish hospitals. This decision is short-sighted as rapid MRSA identification can help hospitals make cost savings.

“The 3M BacLite Rapid MRSA test allows fast, affordable screening of patients for MRSA. It also has the potential to improve patient outcomes and decrease treatment costs. Rapidly identifying MRSA colonised patients provides hospitals with another tool to assist in pro-actively managing health care associated infections (HCAI).”

If I’d been rapidly screened, the result would have been available in hours, not days thereby enabling infection control teams to act quickly. My MRSA infection was hospital acquired (HCAI) following surgery and resulted in six weeks of expensive in-patient treatment. The infection recurred a year later and since then I have frequently been screened for MRSA as an out-patient. I always have to wait 2-3 days for a result and as far as I know, a similar delay still applies for in-patient screening.  I’d be very interested to hear if anyone knows different?

Everyone has a role to play in stopping hospital infection, patients and their families included.  However, if the HSE seriously wants to reduce MRSA figures and make reductions in their budgets, then it should address the problem of delayed identification. The rapid MRSA test would ultimately lead to huge cost savings for hospitals and more importantly, save lives.

Some Day…

Do you have health insurance or is this something you’ve put off until another day? If you’re young, fit and healthy, the chances are you’ve never really given your health much thought. Why would you worry when you haven’t had to face huge medical bills? With the rapid privatisation of our health service, health care in Ireland is becoming more like the 2-tier system in the States. Those with insurance will get top dollar care while those without, will suffer.

About five years ago, my GP sent me urgently to the A&E department of our local public hospital as I had developed acute abdominal pain. I was processed by the triage nurse and allocated a trolley in a cubicle so that the doctors could assess my condition. Once my blood tests had come back from the lab, the decision was made to admit me overnight in case I needed to go to theatre. I was put on a drip (nil by mouth) and lined up on a trolley in the centre of the department along with scores of others, in a queue for a bed. I hit lucky on that particular occasion and was transferred to a ward in the middle of the night. By the following day, my abdominal pain was severe (my intestine was blocked by an abscess) and it was decided that a CT scan should be performed to ascertain if surgery should be performed. I was started on intravenous antibiotics while I awaited the scan but kept fasting in case surgery was required. This was bearable until a harassed looking junior doctor appeared at my bedside to announce that the CT scanner had broken down and was awaiting repair. By the following morning (day 3), the scanner was still out of action and my situation was beginning to look very bleak. Around lunchtime, the same doctor rushed in and asked me to confirm that I had private health insurance. I did, thankfully, so the decision was made to transfer me to the private hospital, to avail of their scanner. The scan confirmed a diagnosis of acute diverticulitis with obstruction of the bowel but it was seen to be resolving so I could finally be taken off the emergency list. Had I not had health insurance, I hate to think that I may have ended up having investigative surgery as no scanner was available to make the diagnosis. Please don’t get me wrong here, I received excellent medical care during my 10-day stay in this public hospital and was very grateful for it. However, the system was clearly in overload and patients were suffering as a result. My insurance was worth every penny to get the care I needed when I needed it most.

Health insurance is a complicated business. It’s designed this way so that the insurers are protected against excessive charges by private doctors and also to restrict patient benefits. There are three main insurance groups in Ireland and they each purposely have slightly different health plans so that it’s almost impossible to compare like with like. I have spent vast amounts of time over the years, trying to work out which plan offers the best deal for my family. It was years before I realised that each member of the family can hold a different policy to meet their individual needs but don’t expect your insurance company to tell you stuff like this, ‘cos they won’t. I review our policies every year to see how we can reduce costs yet still retain adequate cover for both emergencies and day to day care. There are all sorts of clauses to catch you out, so be careful what you change. And remember, it’s too late to look for insurance when you’ve already become ill because penalties will abound. You have to put in the work yourself if you want to see improved benefits. I long ago gave up hoping that an apple a day would keep the doctor away.

Memory Lane

This day last year, I boarded a Ryanair flight to Nottingham with a bag packed with enough things to last for six weeks. I had no idea how long I’d be away and yet I only had one spare set of clothes packed. This was no holiday. I was en route to an NHS hospital to undergo major surgery on my skull.

I had travelled over to Nottingham a few weeks earlier for a pre-op assessment and was therefore permitted to present myself for admission on the day of the operation. Because of my history of recurrent MRSA infection, I had also undergone a thorough screening process in Ireland in the weeks leading up to the surgery and had received the requisite all-clear. I was warned however, that if any active MRSA infection was found in my skull during the operation, I would have to remain in the UK for long-term intensive IV treatment.

My husband and I booked into a little hotel in the city centre the day before surgery and shortly afterwards, set off on a walking tour of Nottingham. We found an open-air music festival in progress in central square and sat in the late afternoon sunshine to enjoy the music and dancing. Knowing that we had a very early start the following day, we opted to eat in a lovely little French cafe/bar which we’d spotted on our walk. We had a delicious meal and I well remember sipping my wine that evening and thinking how surreal the whole situation felt. So far, so good anyhow – our wind-down for the ‘big’ day was going well. We returned to the hotel and having prepared everything for a quick departure in the morning, we hopped into bed early hoping for a good night’s sleep. I had taken the precaution of bringing sleeping tablets to make sure that both of us crashed out that night. We did but not for very long. Unfortunately, I’d forgotten to turn my mobile phone to silent and about an hour later, we were both woken from a deep sleep by my phone bleeping. It was a message from a relative, wishing me well for the following day. A kind gesture but by now I was wide awake and couldn’t get back to sleep. I lay there for hours thinking about what lay ahead and eventually decided to give up on sleep and instead treat myself to a final brew of coffee. I had been asked to fast from food and drink from 4am onwards so there I was at 3am, feasting on a breakfast bar and a delicious mug of strong coffee. I was ready to depart for the hospital at least two hours ahead of schedule.

It was a long day but all went well, apparently. I can’t remember much of it. The surgery on my skull took about four hours to complete and I was patched back together with 59 staples across the top of my head. The following morning the surgeon appeared at my bedside and informed me that during the surgery, three separate abscesses had been found in the front of my skull. If any of them tested positive for MRSA, I was there for the long haul. He also told me that my hair had been washed and dried at the end of the operation as it was matted with blood. I remember having a good laugh about this and asking if there would be an extra charge for his hair dressing service. He then proceeded to pull a drain out of my skull which I hadn’t even realised was there.  My head was very heavily bandaged and felt completely numb following the surgery but I will never forget the sound and the sensation of having that drain removed. It was horrible. However, I really didn’t care about anything much at that stage as it was such a relief to have the operation safely over. The next day the surgeon came back into my room with a big smile on his face and announced that the lab reports had all come back showing the bone specimens to be sterile. No MRSA was found. I would be free to go home as soon as I was well enough to travel.

I arrived back in Ireland, albeit in a bucket, just in time for the arrival of summer. Last year we had hot, sunny weather for the whole month of April and then it seemed to rain on and off for the rest of the summer. The sunshine proved to be the best get well present ever and to me, it’s still shining. You see, the MRSA infection which had dominated my life for two years, has never returned.

Tomorrow, Monday marks exactly one year since that operation. Writing this post has been a real trip down memory lane but now, as I’m sure you’ll be relieved to hear, the time has come to lay this story to rest. Rest in Peace, MRSA. I bid you farewell.