NARRATIVES
TALK TO A
ADVICE
8 July 1998
My husband, Roger Burges, a 52 year old Pharmaceutical Industry scientist suffered his dissecting aortic aneurysm while practising his golf swing at 7.30pm on Saturday 30th July 1994. It was a sultry, summer evening on the practice ground of the Royal Cinque Ports Golf Course at Deal in East Kent and Roger had been hitting balls for about 15 minutes. Then, at the top of the backswing for the next shot, he felt a sharp pain in his upper chest and neck. Thinking, he had pulled a muscle, and feeling rather faint he lay down on the grass. The pain did not go away, so he walked back to the car to sit down to wait my return.
Providentially, I had accompanied Roger to walk our dog along the nearby beach but, with the clouds threatening rain, fortunately had not gone very far and arrived back only a few minutes later. Roger told me 'something had happened' and he thought he had pulled a muscle in his chest. He was pale and wobbly, so I took his pulse, which was surprisingly low at only 40bpm but he said he did not want to get a doctor or anyone from the clubhouse. He asked me to pick up the balls, (there were 26, because I counted them!), put his clubs in the car and drive him home.
The pain persisted as we got home to Staple 20 minutes later - still extending from his upper chest to his neck and jaw, but he said it wasn't a crushing sort of pain that might indicate a heart attack (Roger had worked in the field of cardiovascular research for over 20 years, and thought he knew a thing or two!). There was no pain in his arm and he didn't have any difficulty breathing. His pulse rate was still low. It was then I remembered reading a Reader's Digest article about people with symptoms whose cause was unusual or hard to diagnose - in particular a woman whose jaw ache was eventually diagnosed as coming from a heart problem. I am not normally a decisive person, but I took control and phoned the doctor, even though it was out of surgery hours and was told by a medic from the East Kent "Flying Doctor" Service that, from the symptoms I described, he thought an ECG was needed. If we had transport and I could drive, I should take him to the Kent & Canterbury Hospital. It was only 7 miles away, so at 8.30pm we walked into the A&E Department to ask for an ECG, wondering if we were making rather a fuss over nothing.
The ECG was normal, although chest X-ray showed a slightly enlarged heart and he was admitted to the cardiac ward overnight for observation in the belief that he had probably had a slight heart attack and further blood tests would confirm it. However, the tests did not confirm it! By Sunday morning Roger was still in pain, in spite of the administration of a nitrate drip. He was feeling weak and nauseous, and said he could feel each heart beat in his neck. At noon, the doctors were talking about it being unstable angina, though one doctor listening through his stethoscope said he thought he could hear some strange heart sounds. Eventually, 18 hours after the onset of the pain, an ultrasound examination showed abnormal retrograde blood flow in the ascending aorta, and a CT scan revealed the dissection: then it was panic stations!
There followed a two hour ambulance ride to St. Thomas's Hospital, London with a Canterbury doctor accompanying us and several stops to check blood pressure. On arrival, it was straight to the Cardiac Department, where Roger was sedated for a transoesophageal ultrasound scan. In the event, he was unable to tolerate swallowing the probe, but surgeon Mr Christopher Young said he could see enough from the ordinary ultra-sound pictures. So, at just after 8pm, Roger was taken to theatre for an operation that lasted 8 hours.
By the time of the operation, 24 hours after the initial event, the ascending aorta had stretched from a normal diameter of an inch to nearly three; the aortic valve was damaged irreparably and the dissection was reaching past the arch down the descending aorta. The coronary arteries were, in Mr Young's words later, "flapping in the breeze". During the operation, four inches of dacron mesh was grafted into the ascending aorta and with no more blood being forced between the intimal and medial layers, the dissected wall further along this main blood vessel was expected to knit itself together, although there would always be a weakness. A Gyros stainless steel valve was inserted and, because there was not enough length of healthy tissue for the right coronary artery to be reattached to the aorta, this was by-passed with a piece of saphenous vein from Roger's left leg.
Two hours after returning to ICU, there was an emergency as Roger's blood pressure suddenly dropped and his heart stopped beating, but the surgical team managed to get it going again without opening him up again and he stabilized. He was kept sedated, paralysed and unconscious, on a breathing machine in ICU for 3 days. During this time I gave permission for him to take part in a trial designed to show that infections caused by the tubal feeding were minimised if the feed was administered at certain times of the day rather than continuously. Doctors said the prospect was good for his complete recovery because of his age, and the consultant surgeon told me there did not seem to be any evidence of brain damage, but he could not be sure until Roger regained consciousness. I had not even thought of such a complication, although reading the medical literature later in the following weeks we came to realise the extreme conditions demanded by the heart surgery he had needed, particularly the several hours on cardiopulmonary bypass.
Roger came off the ventilator on Thursday morning. One of the first things he whispered to me was that he was worried he wouldn't make it through the operation and would I pray for him. I told him he had had his operation and that I had done a lot of praying for him already! It was some while before he realised it was Thursday and that he had 'lost' 3 days. He stayed in ICU until Saturday, and was allowed home from hospital on the following Saturday, 12th August, exactly 2 weeks after the pain had first struck. He was off work for 2 months, returning, part time at first, at the beginning of October 1994. He continued in his job as Director of Project Management for Pfizer Central Research, Sandwich for another 3 years, but retired at the end of 1997.
Today, four years since his operation, he feels fitter than ever (though he has put on a little weight!) and plays at least 18 holes of golf every week and we both lead an active life enjoying music, food, wine and travel. The operation scars are fading and the initial frightening occasional twinges in his chest as nerves and muscles reconnected are a thing of the past. He has become used to hearing the continuous ticking of the valve, though we still go to sleep to the music of Classic FM, so as not to hear it in bed!
He is on anticoagulants (presently warfarin) to prevent clots forming on the valve, which involves regular, monthly checks, and drugs to reduce his blood pressure. Initially this was 3 times a day Sotalol, a beta-blocker, which also protects the heart from overexertion, but 8 months after the operation he asked to be switched to Istin (amlodipine besylate), called Norvasc in the USA, which is the once-a-day calcium antagonist drug made by Pfizer. Roger was actually leader of the team at Pfizer Central Research, Sandwich that discovered and developed this top selling drug for the treatment of high blood pressure and angina. He never envisioned relying on it himself!
The only symptom of possible high blood pressure before the dissection had been frequent headaches, but 10mg of Istin a day and not smoking keep the levels normal today (previously he had smoked 20 a day for nearly 30 years). He also takes a 75mg dose of aspirin daily, to prevent platelet clumping in the optic vessels, something which gave him several frightening attacks of double vision in the first few weeks after the operation.
We shall both be eternally grateful to the diagnostic abilities of the doctors at Canterbury, the incredible surgical skills of Mr Young and his theatre team at St Thomas's, the care of the nurses in ICU and of course to a merciful God, who answers prayer. We have read the medical literature and appreciate how fortunate Roger was to have survived both the dissection and the demanding surgery involved in rectifying it. Life is more precious now.
We think this support page is very worthwhile. Information and reassurance from those who have themselves undergone aortic repair and heart surgery is invaluable to patients and relatives and the more doctors understand about both the symptoms and the underlying causes of aortic dissections and aneurysms the more lives will be saved in the future. We had not realised how differently the symptoms of aortic dissections could manifest themselves in individuals, and as a result why diagnosis often takes time, when speed can be essential for survival.
Update: 21 September 2005
I am sorry to inform you of the unexpected death on 29th June this year of my husband Roger Burges, whose successful emergency surgery for a Dissecting Aortic Aneurism to the heart in July 1994 was reported to your website. (An English Aortic Aneurism)
At that time he had an artificial metal heart valve inserted and a 4inch Dacron prosthesis graft in the aorta, (plus the right coronary artery was replaced with a femoral vein!). Roger had lived an active and full life for the last 11 years since that operation, having annual checkups with his cardiologist and coping well with the regular warfarin regimen (in recent years he was a self tester with his own personal Coaguchek machine). He had had no heart related problems at all, except for the gradual onset over the last few months of some early- morning breathlessness, which slowed him down when taking the dog for her morning walk or on the first 2 or 3 holes of an early round of golf. He was going to mention it to the doctor when he next saw him, but he had not got round to it. He just thought he was just getting old and anyway it always got better during the day. This was the only indication that something might be wrong.
That something was indeed wrong with his graft came to light in June, when he had a sudden high temperature with violent shivering or rigor on Saturday 11th June. However, his condition was initially diagnosed by the on-call medic as possibly pneumonia and he was prescribed antibiotics. But opinions differed and when his own GP saw him on 13th , knowing his medical history, immediately sent him to our local hospital for tests and to identify and treat the infectious agent causing the fever.
The hospital tests - heart ultrasound and a CT scan showed what appeared to be a blood filled 'peri-aorta' round the dacron prosthesis, and apparently the source of the infection in his bloodstream. The old dissected aorta had been wrapped round the graft for stability in the first operation but had somehow become detatched and blood had leaked and was leaking into the gap ballooning it out. Surgeons at King College Hospital, to where he was then referred, said he needed another operation to replace the valve and graft as soon as the infection was under control.
A cocktail of antibiotics gradually reduced the violent temperature fluctuations of the fever, but Roger's breathlessness worsened over the next few days with his blood oxygen levels only being maintained by the administration of extra oxygen. Strangely, his breathing suddenly improved temporarily, when he was transferred to ITU the day before his operation and his position was changed.
He had the high risk surgery on Wednesday 22nd June - we were told by the experienced cardiac surgeon that there was a 15% failure rate, higher than the first emergency operation - but there was really no choice, his breathing was getting worse. We had seen the hospital chaplain in the days before, who had prayed with us for Roger and for me and the family and for the skill of the surgeon and medical teams. Roger and I prayed together for peace and strength to face whatever might be.
Initially the surgery was thought to have been successful. Roger returned to the care of the nurses in ITU on Wednesday evening in a stable condition and the healing process began . And then we waited... as we had done 11 years earlier, for the 3½ days until he was expected to wake up. But he didn't wake up, not on the Saturday, 'well, he did have a lot of sedation', or on the Sunday. On Monday he went for a brain scan and then they told us he had had a massive stroke to the brain stem area of the brain and was never going to wake up. In fact, he could stop breathing and die any time, probably within the next 2 days.
Three of our children were at the hospital, our eldest son, living in St Kitts was waiting for news. He and his wife to flew back immediately and Roger died peacefully at 11.30pm on the night of 29th June 2005, twelve hours after they arrived, a week after the surgery and just 2½ weeks after he had become ill with a high temperature.
The surgeon told us afterwards that the reason Roger had been having difficulty breathing was because the 'peri-aorta' was constricting the pulmonary artery, inhibiting the flow of oxygenated blood from the lungs. He also told us there was always a risk of a stroke following this particular surgery, when there is infected tissue round the aorta and heart valve. He thought he had got rid of all the clots and bits, but in effect it is like sifting out grains of sand... He also said that about 2% of artificial heart-valves and grafts get infected each year and have to be re-operated on.
Roger had always taken prophylactic antibiotics before dental treatment, but we had not really understood the implications. Because he had been so well for so long, we tended to take his artificial bits for granted and had expected the valve and graft to last for ever or at least until other parts of the body wore out naturally, but it seems this not always the case.
I am thankful for the 11 years of good life we had together after the first operation, but I did not expect it to end suddenly like this.
Has any one else had a similar experience? Should he have had regular CT scans as well as the annual ultrasound exams, so the condition could have been identified earlier? Would it have made any difference?
Discussion, comments, or questions: Diana Burges
© Copyright 1998 Diana Burges
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