Skip to Content




 

Archives 'Patients’ Stories'

Nick’s story

Nick was born in a hospital in the South Wales Valley in 1968.  He attended a Welsh speaking school and was very proud of his welsh heritage.

After school Nick worked around the country in the construction industry – helping build the M25, Canary Wharf and the Docklands Light Railway amongst his day-to-day worklife.  It was whilst working on one of these projects that Nick first experienced a problem with his throat.  He didn’t take much notice of his ‘sore throat’ at first, thinking he had acquired it through over zealous singing at a Wales/England Rugby fixture back home.

Eventually after many tests and bouts of severe breathlessness he was diagnosed with Wegeners.

Nick was treated in the Royal National Throat Nose and Ear Hospital in Kings Cross, London, travelling there more and more as the years passed.  He underwent many procedures to laser and clear his trachea, along with many drug combinations to try and put, and keep, the Wegeners in remission.  He could tell when he had a relapse and would up his steroids accordingly before being seen in London to stabilise them.

A tracheostomy performed to give his windpipe more room and a chance to recover produced many eventful episodes (like when he ‘lost’ his ‘talking tube’ overboard on the Dover/Calais ferry!).  A stent didn’t prove to be any use either – especially when the stitches holding it in place broke!!!

Nick was really pleased to meet someone with Wegeners in the same place as himself recently, as everyone else he encountered seemed to have their Wegeners in different parts of the body to him.  He could talk and advise as well as sympathise and encourage this person, with whom he was glad to just share his experiences with in the knowledge that they could understand exactly what the other was going through.

Most recently Nick was undergoing infusions in Hammersmith Hospital and was due to go for a review after completing the final one in the batch of three.  When asked how he thought they were doing, he said “my breathing is easier, but the sticky stuff is getting really hard to get up”.  This proved to be true as Nick choked on the Wegeners whilst on his Nebuliser!!! Nick passed away at home on 11th July 2012 aged 43.

If anyone reading this would like to know more please get in touch and we can hopefully help by providing more indepth details about drugs/trials etc.

We’ll never forget you, Nick, and will love and miss you until we meet again x x x

Nigel’s Story, by his wife Pauline

Nigel, when I first knew him in our late teens, loved country walks,  was District Long-jump runner up in the sixth form, tried sailing at his polytechnic; later, he regularly played badminton and croquet and was mad about his mountain-bike; he had boundless energy and scarcely knew a day’s sickness.  Having been the driver (and a responsible one) for all social occasions since passing his test at 17, he scarcely drank alcohol.  He loved his food, ate a healthy mixed diet, was never overweight and never smoked a cigarette in his life, let alone touching more potent drugs.

It seems doubly cruel and unfair that such a man could be dead at 57 after enduring 15 years of chronic illness, but so it is.

In his early forties, Nigel suffered a series of chest infections, and eventually bronchiectasis was diagnosed.  This was ascribed to his having had a severe bout of whooping cough in childhood.  No longer able to cope with intense exercise, Nigel exchanged badminton for golf, mountain biking for trail-bike riding, and adapted to life with chronic lung disease.  A few years later, he was dogged by gallstones.  After having his gall-bladder removed, he had three months of really good health; he was on top of the bronchiectasis and felt much better in himself.

This was not, alas, to last.

That summer – 2006 – Nigel had constant problems with a sore mouth and, eventually, a sore throat, which was diagnosed as persistent oral thrush.  He also had a small lesion on his right cheek which refused to heal.  Gradually, he gained more lesions on his face, especially round his mouth and nose; his airways became even more congested than usual; his hearing worsened.  Over the next couple of years he was sent from specialist to specialist – dermatologists, ENT, immunologists, even an Aids clinic – eventually ending up back at the lung clinic, no further on, and then doing the rounds of all the others again.  They did countless ever-more-complex blood tests; they took biopsies; no-one could diagnose what exactly was wrong.  Unusual tropical diseases were investigated, despite the fact that Wales was the nearest he’d got to foreign travel since our early twenties!  He was treated with a variety of medicines, some of which seemed to ease symptoms temporarily, but none of which worked long-term.  He developed encrusted lesions on his limbs.  Bone in his face deteriorated; he lost the two upper front teeth and developed a hole in his palate. He also developed nasal septum perforation.  His voice became hoarse from damage to his vocal cords.  He lost weight and could not put it back on, even with food supplements.  Unsurprisingly, he had less and less energy as time went on.

Wegener’s (which we had never heard of before) was first mentioned to us as a possibility in the late summer of 2009.  The problem was, Nigel’s symptoms (particularly the nature of the skin lesions), although they ticked many boxes, did not altogether seem like Wegener’s and at some point the tests had included an ANCA test, which had come up negative.  The alternative “favourite” was some kind of fungal infection, but they could not identify one.  Eventually – with the risks clearly spelled out to us that if he was treated for Wegener’s with immuno-suppressants, then it turned out to be an infection after all, the treatment would allow the infection to become even more rampant, and probably would kill him – we went ahead in November 2009 with Cyclophosphamide pulse therapy which, at first, had really good results; Nigel’s appetite returned, and some of his energy; he was able to enjoy short country walks; some of his skin lesions healed; he put on weight.  We hoped that doctors had found the answer, that the Wegener’s could be contained, its worst symptoms eradicated and we could resume something like a normal life.

Unfortunately, though, during 2010, treatment for Wegener’s was severely curtailed by the infections he developed and Nigel’s symptoms worsened again.  At this point, he took long-term sick leave from his work as a Computer Network Manager in a school.  He was never well enough to go back, and the following year retired early, on the grounds of ill health.  By late autumn, his condition had deteriorated still further and he was finding it very hard to swallow or to speak.  That December, a PEG tube was inserted and by the end of January, he was having all liquids and nutrition through this, as any attempt to swallow resulted in him ingesting some of the food or drink into his lungs.

2011 was marked by Nigel’s self-referral to a London specialist, Valerie Lund, whose paper about Wegener’s he had read on the internet.  She referred us on to Professor Pusey at the Hammersmith hospital.  It was Professor Pusey who recommended treatment with Rituximab and the dermatologists at the Hammersmith who finally confirmed that the skin biopsy they took showed results consistent with Wegener’s.  However, our Midlands doctors were understandably reluctant to begin treatment which would lay him still further open to infection. As an interim measure, he was put on a low dose of mycophenolate (MMF) and also, regular infusions of immuno-globulins were started, though there was a delay in this whilst funding was sought. When the rheumatologist up here agreed to rituximab treatment, funding was again a delaying issue, and when Nigel finally got rituximab in late summer, sadly proved of little benefit to him.

In November 2011 Nigel was rushed into hospital with pseudomonas infection, and then released early in December, but he seemed very low and poorly throughout Christmas and was readmitted to hospital on January 12th with raging infection in his bloodstream.  At this point, we were told his chances were less than 50-50.  He did get through the infection and picked up considerably, but on February 14th his condition suddenly underwent massive deterioration; he had suffered a pulmonary haemorrhage and died that afternoon.  My son and I made it to his bedside just in time.

All the many doctors we saw agreed Nigel’s case was unusual, maybe even unique, and was complicated by him having more than one serious condition.  This undoubtedly was a major factor in the delay in diagnosis.  Fortunately most Wegener’s sufferers will enjoy a better outcome than Nigel.  However, further research and publicity are both vital to early diagnosis and effective treatment; even more importantly, we hope that research will pinpoint what causes it and how it may be cured and even prevented.  All who knew Nigel and the remarkable courage he showed in the face of terrible adversity wish to support the Wegener’s Trust in any way we can.  Nigel himself wished that in studying his illness, doctors would learn more and disseminate that information so that his legacy would give hope to other sufferers.

Gary’s Story

My name is Gary, I am 57 years old and in 2010 after what seemed like a lifetime of illness I was diagnosed with Wegener’s granulomatosis.

It all started in October 2009 when I noticed my eye kept watering and my sinuses were constantly blocked, I made an appointment to see the doctor and was given nose and eye drops, the symptoms continued and got worse and by early December I started to get flu like symptoms which included aching joints and pains in my ears I was so tired all the time I could hardly do anything without feeling drained.

Christmas came and I tried my best to join in with the family celebration but by this time I was having difficulty with my breathing and had to give in and go back to bed.  I spent the rest of Christmas and New Year in bed and in early January I knew I had to go back to the doctors.  The doctor had me admitted to Medway maritime hospital where they treated me for pneumonia, after 5 days and still not feeling any better they sent me home with antibiotics.

The next 2 weeks I carried on getting worse, most days I couldn’t even get out of bed, I was suffering with nose bleeds, I was weak because I couldn’t eat and had lost so much weight and also I had started to lose my voice.

On January 30th I awoke with chest pains, my wife called an ambulance and whilst on route I suffered a heart attack, on arrival at Medway hospital I was stabilised but because they thought I also had pneumonia I was transferred to St Thomas’s hospital where I was taken into theatre and fitted with a stent.  They also tested me for swine flu but this came back clear.

A few days later I was starting to feel a bit better, I was hoping this would be it and I was going to be well again but no that didn’t happen the next day I had the same chest pains and was taken back into theatre to be fitted with yet another stent.

Due to my condition and because I was so ill my family requested I remained at St Thomas’s and not be returned to Medway hospital, thankfully they agreed as the next day I suffered internal bleeding and was rushed to intensive care and put on life support under the care of Dr Gibson, 2 days later my condition started to improve but I was still critical and remained in intensive care for a further 2 weeks where I was diagnosed with Wegener’s granulomatosis, which we later found out was the reason for my heart attack.

My treatment consisted of 8 courses of cyclophosphamide which was given every 2 weeks, after the first course of treatment I started to feel better straight away and was moved from intensive care to HDU where i started a course of physio to help me walk again as I was so weak and had lost so much weight, after my second session of cyclophosphamide I continued to do well and was allowed to go home.  After I had finished my 8 courses of cyclophosphamide I was put onto 25mg of methotrexate and steroids.

The Wegener’s did affect my airways and my breathing was slowly getting worse, a few weeks later I collapsed at home unable to get enough oxygen, my wife again called an ambulance and I was taken back to Medway hospital, I was assessed on arrival and transferred to charring cross hospital under the care of Dr Sandu, I underwent laser treatment on my airways, and was sent home 2 days later but had to return a further 4 times for laser treatment, until march 2011 where I underwent major surgery to rebuild my airway, they used cartilage from my ribs and a skin graft from my leg to reconstruct the airway, I was fitted with a trachea for 4 weeks and finally after 5 long weeks I was allowed home.

I have now improved considerably and have returned to work full time.  I am still under the care of Dr Gibson and the brilliant Wegener’s team at St Thomas’s hospital and I have regular check-ups every 6 months, I am happy to say after all that I am still living a full and happy life with my wonderful family.

Billy Newton’s story, by his son Paul

My Dad, William Newton,  was born in 1944 in Wallsend, a suburb of Newcastle.  He was a superb father to me and my brother Andrew, husband to my Mum, Beryl, and Granddad to my two kids, Thomas and Millie  who were 3 and 6 when he passed away.  He worked hard all of his life starting his adult life in the Rising Sun Pit in Wallsend before leaving to join the police force, where her served with great distinction until his retirement in the mid 1990’s.

He retired early on health grounds, having been diagnosed with Rheumatoid arthritis. Initially, I wouldn’t say it had a massive impact on his life.  He had to give up coaching the village football team, where he had been a stalwart for 10 years or so, and every so often he would have spells of fatigue and soreness.  But my Dad never complained, he never talked about how he felt and he certainly never shared he suffering with us, his family.

And so the story went on for the next 12 or more years.  My Dad had arthritis, he got tired easily, but he lived with it and his painkiller kept him able to function.   In fact, it was only about 3 months before he died that we ever heard the words Wegener’s Granulomatosis mentioned.  He kept it from us.  We have no idea when he was diagnosed, because he didn’t want us to worry, he didn’t want us to fuss and he certainly didn’t want us to share his pain.

I got a call one day to say that my Dad was going into hospital to have a few test run as he was getting very very tired and maybe needed a change of medication.  That was the Wednesday, I took him to the hospital and he was laughing and joking, as he always was, I never thought it would be the last time I would see him without a oxygen mask on.  I went on holiday with my family on the Saturday and returned the following week.  I had spoken to my Mum while I was away and she told me that there had been good news, the doctors had found a virus that was making him sick and they were working on him, so he would be fine.

So I turned up at the hospital on the Sunday to show him my holiday pictures and catch up.  When I got to his room, the bed had gone.  I asked where he was and the nurse told me he had just been taken to the HDU.  He had suffered a massive heart attack. Although it looked like he was pulling through,  two days later he had another heart attack and died.   His cause of death was given as pneumonia, brought on through difficulties derived from Wegener’s Granulomatosis.

There isn’t a day goes when I don’t wish that I had spoken to him more, helped him more and understood what he was going through, seemingly alone.  I wish I could have done more, but its too late, so I have to do the best I can.  I’m trying to help others understand this condition and Im trying to stop others going through what we have had to.

I love you Dad.
x

Derek’s Story

My name is Derek Anthony and I will be 63 years of age next Birthday (2010). I joined the Royal Navy in 1966 and qualified as a submarine Officer in 1970. I spent some twenty years in Submarines and then did other jobs on the Naval Staff, was Captain of a Frigate and finally retired from the Royal Navy as a Rear Admiral in 2003. I then took up a job as the Clerk to a Livery Company in London, the Worshipful Company of Shipwrights, and I retired from that job in November 2008. Apart from now enjoying the fruits of retirement I am currently the Chairman of a large Royal Navy Officers’ Charity (unpaid!), have been doing this for some six years, and intend to do it for about another two years or so. I married in 1970, and we have two grown up daughters and eight grandchildren.

The first obvious symptoms of me being ill portrayed themselves in October 2001. During that month I seemed to have a constant cold and flu like symptoms which whilst not incapacitating me made me feel pretty rotten. I had little appetite for food, slept poorly, and would wake in the night with heavy sweating. In early November I spent two weeks at home in bed (at that time we lived at Helensburgh in Scotland) but with little improvement in my cold and flu like symptoms I was eventually advised to go to the Accident and Emergency Department at the local hospital by the Base Naval Doctor. This was not a happy experience. Having waited in a corridor on a Porter’s Trolley for 6 hours, I was told by the very young Doctor that I should go home because there was no bed available in the hospital – at that stage I had not actually been examined! I was ready to go, but my wife insisted that I should be seen and that we were not going anywhere until I had been seen. Eventually after waiting in the Hospital A&E department all day I was admitted to a female Surgical Ward.

For the next two weeks I remained in this hospital with a high temperature and feeling thoroughly rotten. A bevy of Doctors came to examine me at different times. I was under the care of a consultant gastro-enterologist rather than a respiratory consultant. My wife was told that this was because my condition was considered chronic rather than acute. No diagnosis was given, but when my wife asked the specialist what he thought was wrong, he blurted out in an open passage way “It is probably lung cancer”.

Two weeks after admittance to this hospital I had a cardiac infarction. It occurred on a Sunday night in the toilet attached to the Ward. I do not know how I was found, but my heart had stopped when I was found and by good fortune the on duty doctor was an anaesthetist. After some three days in an ICU in that hospital I was transferred to Gartnavel Hospital in Glasgow. Here I was put under the care of respiratory consultant and had a series of tests to try to make a diagnosis. By mid December no diagnosis had been made but my condition had improved at a snail’s pace. I was allowed home from Hospital for my wife’s birthday but a few hours before I was due back to hospital I developed an erratic heart beat. My wife took me back to Gartnavel Hospital immediately and on arrival I was transferred to the Cardiac Care Unit at Glasgow Royal Infirmary. Again I made steady progress and on the morning of Christmas Eve the Respiratory Consultant came to see me and said that he thought that there was a 70% chance that I had Wegener’s granulomatosis. He explained what this was and what the treatment was and asked whether I would be content to start the treatment. I said that I would (70% was good enough for me!) and was discharged from hospital for Christmas with a very big bag full of medicaments. I was placed on a high dose of steroids, warfarin, methotrexate, and ramipril (an ace inhibitor). These medicines were the driving drugs to deal with the Wegener’s and also my immediate past heart history, but I also was given other medicaments to off-set the side effects of some of these drugs.

I spent a very happy Christmas at home in 2001 with all my family and from then on I got better and better. The dose rate of steroids was steadily reduced (now 5mg per day) and that of methotrexate adjusted for optimum effect (it has been at 17.5 mg per week for some seven years). I worked from home in the early months of 2002, and went back to work fully in April 2002.

Since that time I have had one recurrence of the Wegener’s in April 2004, but because I knew the symptoms and what to look for, a high dose of steroids with steady reduction over a week or so solved the problem.

Since retiring from the Royal Navy (and this had nothing to do with the Wegener’s), I have been under the care of Doctor David D’Cruz and his wonderful team in the Lupus Unit of St Thomas’ Hospital. I go for six monthly check-ups there. In between times I attend my local Surgery in Wye for two monthly blood tests for Liver Function (because of the drugs prescribed) and as required (about monthly) to check that the warfarin dose is giving the required blood consistency.

I hope that I am not tempting providence when I say that I enjoy a ‘normal’ life. I do all of the things that any other person of my age and circumstances would do, and enjoy my home life and my family to the full. I might add that the huge quantity of tests of all kinds that I had revealed some other medical defects. I had had gastric erosions in the past (1992) and so take medicaments to keep that under control, and I also have antiphospholipid syndrome (thickening of the blood) which is treated by warfarin. Finally I have Alpha-1 antitrypsin deficiency which personifies itself in ‘genetic’ emphysema. I take medicaments to help control that, and whilst my days of running 100 metres are well past, I can play golf and swim, and walk with ease.

As you will have seen, I had a very difficult start at the beginning of all this, but thanks to the wonderful skill of the consultants and doctors that have looked after me since December 2001 I have had the best possible chance that anyone could have given me. I am living proof of that, and long may it continue!

James’ Story

I was diagnosed with Wegener’s Granulomatosis over a decade ago, after many months of a persistent smokers’ cough (having never smoked in my life) and profuse bleeding after a sinusitis operation. By the time Wegener’s had been identified, the condition had already progressed to my kidneys, where the unchecked condition can wreak its worst damage. The difficulty in discerning Wegener’s from a plethora of equally plausible diagnoses was clear from the outset.

Even after diagnosis, Wegener’s is an elusive syndrome; for me, a persistent cough marks its arrival, but then again like everyone else I have periods of coughing totally unrelated to Wegener’s. If the condition weren’t complicated enough in itself, my immuno-suppressing medication has made me highly vulnerable and has led to many chest infections, which a few times have triggered off a flare-up of the condition. Wegener’s can flare up on a whim and so I am always conscious of its power over me. As with an opponent one can never defeat outright, the hope always has been for a truce. My Wegener’s is currently in remission, and I believe that after a couple of difficult years, I have earned a reprieve. I am under no illusions that it will rear its ugly head once more.

I have certainly had my share of serious flare-ups. I experienced my most severe flare-up about nine years ago, when for the only time in my life I simply didn’t have the strength in me to stand up and had to be taken in a wheelchair to a hospital bed. That sense of utter helplessness was terrifying, particularly for one who has lived by the mantra of “standing on my own two feet” all my life. The phrase took on a totally new meaning, its literal one.

I have been fortunate through Dr D’Cruz’s expert care and his full appreciation of the long-term tenure of this condition to be able to follow a relatively normal life. I am very proud to have founded the Wegener’s Trust with him. The need for it has become evident almost immediately. With so many people investing so much of their time and energy into it, I strongly believe this Trust is going to make a real difference in the understanding of this elusive condition and in funding meaningful targeted research. We desperately need to get more timely diagnosis of Wegener’s and a more effective treatment. The rare nature of the condition has meant this research is long overdue and your donations will matter greatly.

I would like to conclude by thanking my greatest support throughout all of this, my darling wife Antonia.

James Hancocks

David’s Story

It started at the beginning of September last year, 2008, two days before we went on a week’s holiday with four very good friends. My husband, David, announced he had a bad earache and he obtained some antibiotic eardrops before we flew out to Majorca. Whilst there, however, the pain increased and a local pharmacy gave him a course of antibiotic tablets.

On returning home, he was prescribed a further two courses of antibiotics by our doctor but still the pain continued and he was referred to an ENT Consultant in London. After several tests and scans, the consultant booked him into the King Edward VII’s Hospital for what should have been a straightforward 20 minute procedure to drain the infection, but which in fact lasted over an hour. We were told afterwards that the infection was like nothing the doctors had ever seen before. Although the extreme earache, from which David had now suffered for over ten weeks, calmed down, his eardrum was still inflamed and he began to suffer from cold symptoms followed by acute sinusitis.

Worsening Symptoms

The symptoms continued for several weeks. The sinusitis persisted and the pain worsened. He also began to feel unwell generally, with increasing weight loss – about 2.5stones in three months – and lethargy. He was aware of profound tiredness, increasing weakness and being less steady on his feet. He also complained of constant nausea and consequently had little appetite.

In mid December, he was referred to a Consultant Physician at St Thomas’ Hospital. After examining David, the physician suggested he could be suffering from pneumonia and referred him to a Consultant Chest Physician at our local hospital – Mayday in Croydon. An appointment was made for the end of December.

Last Christmas – one of David’s favourite times of the year – was a quieter affair than usual. We still had 12 round the dinner table and David did his best to join in with the fun but it was a struggle and he had to return to bed every couple of hours to rest.

Eventual Diagnosis

David spent most of the following three days in bed and on the 29th December he attended his first appointment with Dr Loke, the consultant at Mayday, who arranged for a CT scan to be taken and a bronchoscopy to be performed. On 21st January, by which time David was also showing signs of Reynaud’s Phenomenon, Dr Loke diagnosed David as having Vasculitis, probable Wegener’s Granulomatosis, but he needed to take an ANCA blood test and a nasal biopsy to be 100% sure. The blood test was positive and David was booked in for the biopsy on Monday 2nd February.

Signs of Improvement

On that Monday morning we awoke to two feet of thick snow! David’s procedure was one of only a few able to be carried out that day after which he was admitted on to a ward and in the evening was given the first of three IV infusions of methylprednisolone. I sat with him on the following day for the second infusion, and it was almost as if he was getting better in front of my eyes. He said he felt euphoric! He was discharged that day and went back as an outpatient on the Wednesday for the final infusion.

David attended Dr Loke’s clinic the following week and, although the results of the nasal biopsy had not proved conclusive, we were told that the diagnosis of Wegener’s remained solid and he was prescribed with 50mg Cyclophosphamide and 50mg Prednisolone daily with the instruction to have weekly blood samples taken at our surgery.

The next three weeks were great!  For the first time in months, David felt well, regained his appetite and energy and visibly put on weight.  Life seemed to be back on track!  He was able to work in the garden, visit friends, restart his duties as a churchwarden and continue with the charity work in which he had been so involved.

A Difficult Time

Sadly, however, this improvement was short lived and at the beginning of March David began to suffer from nausea and severe headaches running down behind his left ear.  He was given a variety of different painkillers and struggled through a difficult month which happily did include one wonderful weekend at the end of the month when our daughter returned home from Dubai as a surprise for my birthday.  We celebrated by lunching with the family and then dined at a local restaurant in the evening.  This later proved to be our last meal out together.

David then began to experience numbness on the left side of his tongue and, after a desperate letter to Dr Loke asking for help, he was admitted into Mayday on 15th April for various tests including an MRI and CT scan of the brain, a lumber puncture and an ANCA blood test.  The tests, however, revealed nothing significant and David was discharged a week later with instructions to take an increased dose of steroids for five days.

I kept a chart of David’s progress during this period.  The headaches were certainly less severe and the numbness in his tongue less obvious, but he spent a lot of the time in bed, experiencing hot sweats during the night and suffering from nausea and vomiting.  He was eating very little and was again losing weight.

I felt at this point that Mayday Hospital did not have the necessary expertise to control whatever was happening in David’s body and I therefore researched the internet and asked several friends and contacts if they knew of anyone who could help.  I was recommended Dr D’Cruz at St Thomas’ and asked David’s doctor to write a referral letter whilst keeping my fingers crossed.  I also informed Dr Loke of what we wished to do and he was supportive of our decision.

Then, early on the morning of Saturday 2nd May, after a very confused and restless night at home, David collapsed.  I called an ambulance which rushed him back into Mayday and he was re-admitted on to Dr Loke’s ward.  It was a bank holiday weekend and so he was not seen until the following Tuesday by Dr Loke who noted his confusion, increased weight loss and also that he was losing his voice and having difficulty in swallowing.  He had palsy in several of his cranial nerves, most notably nerves 7, 8, 9 and 12, which the doctors believe was caused by pressure from the inflamed dura at the base of his brain.

Transferred to St Thomas’

That Friday evening we were given the news that Dr D’Cruz had accepted David as a patient and he was transferred up to St Thomas’ by ambulance on Saturday morning, 9th May.  Dr D’Cruz actually came into the hospital that afternoon to examine David himself and confirmed that the diagnosis of Wegener’s Granulomatosis was correct.

The first week in St Thomas’ was very difficult for David as he was confused and distressed and it was agreed that I should be allowed to come into the hospital in the mornings – visiting hours were usually only during the afternoon – in order to be with him for the full day which was a great help.  Since David was unable to eat, an NG feeding tube was fitted and later replaced with a PEG directly into his stomach.  He was also prescribed with insulin to control the sugar levels in his blood.

The days passed and in the middle of the second week David was given the first of six fortnightly infusions of cyclophosphamide and was told he would be discharged at the end of the following week.

However, that weekend, Spring Bank Holiday, David caught pneumonia.  He was very poorly for the next ten to twelve days and could not be discharged.  His second infusion of cyclophosphamide was delayed until Friday 5th June, when the pneumonia had cleared, and his discharge was rescheduled for the next Monday.  However, on the day after the infusion and with his immune system at nil, David once again came down with pneumonia and, once again, could not be discharged.

Intensive Care

At the beginning of the following week, David was very tired, with high blood pressure and a very high heart rate.  The doctors were concerned enough to transfer him to intensive care where they managed to control his heart rate and he soon again began to show signs of improvement.  My daughter, son and two stepsons all came to the hospital and were able to spend precious time by his bedside.

Then, early on Friday 12th June, David’s health suddenly deteriorated and he could not breathe.  Attempts to resuscitate him failed.  Although David was very ill, his unexpected death came as a great shock not only to his family but also to Dr D’Cruz and his team, who later carried out a post mortem examination in order to learn just what had happened.

David died from severe Wegener’s Granulomatosis.

The St Thomas’ Wegener’s Trust has been formed to raise awareness of the disease and to raise funds for desperately needed research.  Perhaps, if there was more known about this illness, David would still be here with us today.

Back to top