Patients know best

March 31, 2010

Had you been wondering where I’d disappeared to? Sorry about that. My elderly parents are in need of an extra helping hand right now so I’ve been otherwise occupied. I’ve also had the little business of an operation to recover from and that’s kept me somewhat quieter than usual. This¬†week, it’s definitely been a case of Steph nose best ūüėČ

Recovery from surgery can usually be measured in steps. You know the way it is… two steps forward, one back until you’re over the worst and then it’s generally steady progress from then on. My recovery on this occasion has taken on a different pattern. The first 10 days post-op were the easy bit and it’s been a bit up and down since then. If there’s one thing I’ve learnt over the years as a patient, it’s never to doubt myself when it comes to reporting symptoms.

I requested another appointment at the hospital yesterday as I sensed something wasn’t right. The consultant examined my head endoscopically and was able to confirm my suspicions. Despite daily wash-outs since the surgery, the inside of my head had crusted up again and was in need of further Spring cleaning. I continued to insist that I could also smell decay. After working on my head for some time, the culprit was soon identified. The donor site for the graft was to blame. Some dead cartilage was visible on one side of the nasal septum where tissue had been removed and rotated upwards into my forehead, for grafting. Once this decaying cartilage had been cut away yesterday, my airway felt very much better. I was patted on the back for my skills of detection and sent on my way with a request to return if symptoms¬†recur.

The culture of healthcare is thankfully changing from one of paternalistic medicine to one of participatory medicine. Everyone is better off when patients are encouraged to engage with the medical profession.

Patients Know Best is actually the name of a company whose website is already integrated into the NHS secure network and helps UK patients with chronic diseases, to manage their health care.


March 18, 2010

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.

Past My Prime

March 11, 2010

The Biopsy Report has suffered a knock-out punch. The first round of judging for the 2010 Irish Blog Awards has been completed and my blog has failed to progress in either of the two categories for which it was nominated.¬†¬†I just gotta accept it, this blog is now officially, a has-been ūüė¶

Seriously folks, I’d like to thank those of you who kindly nominated The Biopsy Report for the Best Specialist Blog and the Best Personal Blog award. Having been a finalist in each of these categories in the past, I’m more than happy to take a back seat this year and watch the fun from the sidelines. And anyway, I’ve already reaped huge rewards from this blog. Not only has it yielded some fantastic blogging friends, it’s also succeeded in keeping me focussed and connected throughout the past difficult year with my health. For that alone, I’ll always be grateful.

I’m delighted to find that all of the blogs (bar one) which I nominated for a blog award, have made it through Round 1. I congratulate you all on your success and wish you the best of luck in the next round of judging. Health permitting, I look forward to meeting up in Galway at the end of the month.

An Unholy Mess

March 11, 2010

No,¬†not¬†my poor old head. I’ll tell you about that another day.

I’m talking about the latest controversy to rock the Irish health service. Yet another systems failure has emerged which directly impacts on patient care and safety. Am I surprised? Sadly, not one bit.

News emerged earlier this week that almost 58,000 x-rays taken over a 5-year period at Tallaght hospital in Dublin, were never reviewed by a consultant radiologist. Today, we hear that many thousands of GP referral letters lie unopened and unanswered somewhere within the bowels of the hospital.

Now everyone’s fighting over who’s to blame for these astounding revelations.

Consultant radiologists at Tallaght hospital say that over the past three to four years, they have written more than 40 letters to hospital management seeking extra staff to cope with the volume of work. They also say they warned management that there was a growing delay in reporting on X-rays but nothing was done.

The new CEO at  the hospital says that he only became aware of the problem when he was appointed in Decemberof last year.

The GPs in the area say that they’ve been aware for a long time of a major problem with regard to referral letters sent to Tallaght hospital.

Our Minister for Health is conveniently out of the country at a time when the health service is falling apart.

The Health Service Executive (HSE) is floundering around trying to restore public confidence in a health service that is on the verge of collapse from years of mismanagement and under resourcing.

There have been heated exchanges in the D√°il this morning over the lack of accountability for the mess.

The whole situation beggars belief. Patient care and safety have undoubtedly been compromised by this latest health scandal. The sad reality is that what’s emerged from Tallaght hospital this week, is only the tip of the iceberg.

An anaesthetic blunder

March 2, 2010

When I came round in the recovery room last Friday, I enquired what the time was and was surprised to learn that I’d been under anaesthetic for 3 hours. It was only when I was whisked back to my room 30 minutes later that I realised my vision was temporarily blurred. My long-suffering husband arrived shortly afterwards to spend the afternoon at my bedside while I slept off the effects of the anaesthetic.

Before my husband left that evening, I asked him to turn on the television, to BBC2 so that I could follow a Six Nations rugby match. My vision was still too blurred to watch the television but I reckoned I’d enjoy the match by listening to it. Blow me if the television didn’t have every channel except BBC2 available. I told my husband not to worry and he turned off the set before leaving.

Shortly afterwards, the night nurses arrived on duty and the new night sister appeared in my room along with the day sister who I’d met earlier in the day. When they enquired if everything was okay, I responded that I was fine but that I was disappointed not to be able to follow the rugby match on my telly.

I’d no sooner said this when the night sister turned on her heels and disappeared out of the room. She struggled back into my room moments later, carrying a large television set from an adjacent room and soon had it plugged in with BBC2 working perfectly. We all laughed together about how they were looking after my every need and I thanked them profusely before they left to carry on with their ward round. I settled down to enjoy the match.

I waited and waited but there was no sign of any rugby happening on BBC2. Irritated, I flicked the channels using the remote control and to my surprise and acute embarrassment, I discovered that the rugby was actually being shown on BBC1. Oops!

I blame the anaesthetic. Luckily, I didn’t see the night sister again!

Cometh the Hour

March 1, 2010

It was a close call. When the surgeon looked inside my head, he said he groaned. My airway was inflamed leaving precious little room to manoevre surgical instruments. On waking from the anaesthetic, the surgeon remarked “You sure like to give me a challenge!”

I’d arrived on the operating table by the skin of my teeth. For the previous 10 days, I’d been battling a nasty upper respiratory infection and right up to the last minute, I didn’t know if I’d be well enough to make the trip to Nottingham. An antibiotic luckily cleared my head and chest in time but the evidence that a battle had taken place, was left behind.

The intricate endoscopic surgery took over 2 hours to complete. The inflamed area of bone in my forehead was first drilled out to prepare a clean surface for the reconstruction. The surgeon then fashioned a large flap of mucosa taken from the nasal septum and used this to line the exposed bone of the anterior frontal wall. The graft is held in place by a disposable dressing until it heals and my airway has been internally splinted to prevent the formation of adhesions. Photographs were taken throughout the procedure for the benefit of my surgeon in Ireland. He is due to remove the¬†stitches and splints in another 10 days and I’ll return to Nottingham for the verdict in two month’s time. I’ve been warned that the donor site in my head will be sorer than the host site but so far, so good. Exhaustion is the main symptom.

I was discharged from the hospital the following day and returned to the hotel with my husband. On hearing of our circumstances, the hotel staff had kindly facilitated my husband by allowing him to keep his room until it was time for us to leave for the evening flight home. I was delighted to be able to watch the rugby match in peace and quiet. As the final whistle blew, we left Nottingham city centre for the airport. I came home victorious in more ways than one.

Cometh the hour, cometh the woman!

(Picture taken on mobile phone – Nottingham Main Square).