Alan's story

Alan's story

At the tender age of just over 65 I was diagnosed, through routine screening, as having a large abdominal aorta aneurism (AAA) and given a 16% chance of surviving a year if it was not operated on quite quickly. The proposed operation was to be done under private medical insurance provided by my employer’s group medical insurance.

After other tests and a pre-operation assessment some handful of weeks later I was taken by my wife to the area teaching hospital (the local private hospital did not have adequate facilities for this kind of medical work) for elective surgery to have the abdominal aorta aneurism stented to relief the pressure on the aorta walls. It had been thought initially that this could be done using epidural anaesthesia but was quickly changed to full anaesthesia because of my spinal surgery history some 23 years earlier (discs trimmed, metal work installed) and again 8 years previously (discs trimmed and metal work subsequently removed as it had broken free). The aortic stent had to be done in such a way that the blood supply to one kidney would be cut off permanently leaving me with one active kidney and the subsequent reduction in kidney function.

The pre-operative assessment showed evidence of previous heart attacks of which I had not been aware but otherwise I was in reasonable health for a relatively active and working (senior construction management) man. Residual risks were felt to be acceptable.

During the elective surgery to stent the aorta I suffered what is known as a catastrophic reaction to surgery. I had a heart attack whilst in the operating theatre, developed pneumonia (again - having suffered that fate at the even more tender age of twelve) within 36 hours and was rushed into the intensive care unit (ICU) where I stayed (unknowingly) for six days. Whilst in ICU I had what was later diagnosed as a spinal stroke, the effects of which were, amongst other things, total loss of control to bowel and bladder as well as neuropathy, particularly to feet and ankles leaving me with no feeling in them. The pneumonia (exacerbated by years of smoking) left me with COPD (chronic obstructive pulmonary disease). Luckily the elective surgery took place at the teaching hospital and not the local private hospital where the ICU (and other) facilities were not up the high and modern standard of the teaching hospital. I was subsequently told by various NHS practitioners that without the ICU treatment that I received at the teaching hospital I would have been returned home in a wooden overcoat.

All of this left me bed bound and recovering after ICU initially in a cardiac ward for a number of weeks and later in a rehabilitation ward when I had to learn to walk again eventually using just a stick as I knew not whether I was putting my foot hard onto the ground or trying to step forward with one of my feet not having actually made contact with the ground – staggering around a lot (although alcohol free!!).  Also I had to learn to self catheterise so that a modicum of control over my bladder could be achieved. The prognosis in rehab ward was that if you haven’t recovered in 4 years you won’t. Cheery thought evidenced by the fact that I still have to self catheterise and it is now over 9 years later.

Discharge came 8 weeks after attending for surgery and a just couple of weeks before Christmas (it got me out of Christmas shopping!!).

Eight days after getting home I was overwhelmed by breathing difficulties and had a rapid 27 mile ride back to the teaching hospital (A & E dept) by emergency ambulance operating ‘twos & blues’. I was admitted to a renal ward for further checks and tests and 4 days before Christmas was treated to a percutaneous coronary intervention (stent to the heart via the wrist) and wound up discharged 2 days prior to what was to be a very quiet Christmas and New Year.

Almost 3 weeks later, towards the middle of January, I was totally overcome by a urinary tract infection (UTI) and pneumonia (again!!) and so had another rather rapid 27 mile ride back to the same hospital where I was admitted to ICU for a further 11 days with permission later given by my wife for a tracheotomy to be performed so that I could breathe (it does help I’m told!). I was taken from ICU to a respiratory ward for a weeks recovery prior to discharge almost at the end of January.

Having lost almost 20% (yes 1/5th) of my body weight in 15 weeks my GP uttered the words ‘full fat, full cream diet to get weight back on & don’t worry I’ll sort out the cholesterol later – ITU care is damned good but the menu is b****y awful!’ - unfortunately he had to refer me back to hospital again (by gentle car ride this time!) a few days later for the staff there to try and limit the occurrence of UTI’s to which I was becoming more and more prone.

The surgeon who led the team for my AAA surgery was absolutely devastated by the catastrophic consequences as he had performed over 250 AAA operations of a similar nature without incident and, as a result, post operative procedures were changed in an attempt to prevent any recurrence of the problems that I suffered.

During the next seven months I had many and various tests and examinations, physiotherapy, blood tests, podiatry treatment and general care by the surgeon & his team, GP and community nurses as well as exploratory discussions and tests to consider the viability of a sacral nerve stimulation implant to attempt to produce some control over bowel and/or bladder or even the outside chance of electro/mechanical valves to give a similar result. The physiotherapy was directed towards getting me fit enough to withstand further possible surgery, should it be required, to mitigate the bowel, bladder and neuropathy problems. 

During this period I took voluntary redundancy and so formally ended my working life. Regretfully.

At the end of the seven months (September) I was yet again hospitalised because of severe diarrhoea, continuing UTIs and kidney function results worse than anticipated. The following three months went much the same as the previous seven months had with once more being hospitalised, in the January, with further severe diarrhoea, UTIs and still poor kidney function. The treatment was a severe but very highly controlled ‘disinfecting/cleaning out’ and culminating being put on the surgeons list for a colostomy as soon as I was deemed to be fit enough to withstand further surgery. Sacral nerve stimulation and electro/mechanical valves were ruled out as the spinal stroke had wrecked the nervous system in the area that would control them.  Again a further battery of tests and examinations were carried out and also included a flexible cystoscopy and CT pneumocolon. Not a lot of personal privacy left after that lot!!

The routine follow up checks to the AAA concluded that the elective surgery taken in splendid isolation had been successful. One thing less to worry about.

Because of my history of poor reactions to surgery the consultant anaesthetist, after a lot of consultation and deliberation, concluded that, subject to bed availability, it would be straight out of the operating theatre and into ICU following the colostomy operation. This happened (thankfully uneventfully) in November 2014 and four days later it was home again for further recovery. The specialist stoma care nurse saw me regularly for a couple of years and blessedly a form of bowel control was achieved.

In Feb 2016 I was introduced to Comfizz Ltd for parastomal hernia support – the attitude and concern of the company is terrific and I continue to use their products and was chosen to become one of their ambassadors in 2018.

Relief – the next few years from 2016 followed fairly uneventfully - apart from minor injuries, periods of intense podiatric treatment following inadvertent foot injuries (which would each take about 3 years to heal), detached retina and cataract operations (which necessitated voluntarily surrendering my driving licence for 13 months), routine annual checks on COPD and retinopathy, pre-diabetes, sight checks as required for new spectacles and to an area DVLA sight test centre to satisfy them that my sight was good enough to be able to drive legally (I was on their records because of cataracts, detached retina and vehicle modified to hand controls as no feeling in feet). Because of comments by various people about my health and visual acuity in respect of driving I took the Institute of Advanced Motorists assessment and test which I passed in a very short time.

Routine bowel cancer screening (by post) became a problem as blood was found in the submitted stool samples and so flexible sigmoidoscopys were used to check that, thankfully, cancer was not an issue – it was then realised that an ostomates stool samples are likely to contain traces of blood as the body has no mechanism to stop blood flow to internal organs - this led to removal by consent from the bowel cancer screening programme.

During this period my marriage deteriorated to such an extent that my wife and I separated and subsequently divorced leading to my re-location to the North East of England from whence I came and an area I am having to rediscover as the changes over the 45 or so years that I have been away are greater than I had realised.

With the relocation of course came the need to find a new General Medical Practice and transfer to the various support organisations I need – all of course through a series of lockdowns caused by the Covid 19 epidemic. Thankfully the routine testing and care is taking shape and the remaining cataract operation has been successfully performed. Life on my own during the last four years has become quite relaxing although it needs a good dose of organisation to keep it running smoothly – close relatives in the area have been of great assistance.

A huge "thank you" to Alan for sharing his story with us! We love hearing about & sharing your stories. Please do get in touch via if sharing your story via our blog this is something that interests you.

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