Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
Three months ago I had never heard the words “aortic dissection”. Then, after it happened to me, I did a bit of research on the internet but all I could find were medical articles describing the symptoms, diagnosis and treatment of dissections, nothing which was written from the point of view of people who had suffered from this horrible illness. So I was really pleased to find this site and to read the stories of those who have experienced and survived AD. This is my story – please bear with me ‘cos it’s quite long:
I live in a tiny village in the Languedoc region of the South of France. Our house is in the middle of the vineyards of the Minervois wine region, we’re a 10-minute drive from the beautiful Canal du Midi and we can see the white peaks of the Pyrenees from our window. Sounds idyllic doesn’t it? And it was. We moved here from Cyprus about 18 months with the intention of enjoying a relaxing retirement. We spent 2015 working in our garden, taking long walks with our dog and exploring the neighbouring towns and villages including the beautiful city of Carcassonne.
I’d always considered myself pretty healthy. I hadn’t had any serious illnesses for years and rarely had even a cold or a headache. I did consult a doctor in Cyprus a couple of years ago because I was concerned that my blood pressure might be a bit high, but he told me not to worry. So I didn’t. Then in November 2015 things suddenly changed. I was just getting into my car after a Pilates class when I experienced an excruciating pain in my chest and back. I suppose I should have sought help there and then but I could only think about getting home. It took me ages to drive the 5km, crying in pain all the way. When I got there my husband offered to drive me to the doctor’s but I just took some pain killers and crawled into bed. I had no idea what had happened but thought I’d suffered some sort of muscle spasm, which would soon wear off. Of course it didn’t, so two days later I went to my GP. He examined me but could find nothing obviously wrong, so he arranged for x-rays, an ultrasound and some blood tests. The only abnormal result was that the blood test showed a high level of inflammation somewhere in my body. By this time two weeks had passed, I was still in terrible pain and we were getting nowhere, so my doctor arranged for me to be admitted into the rheumatology department of the local hospital.
I was admitted on a Thursday and the nurses carried out all the usual tests – blood pressure, electrocardiogram etc. – and they also gave me strong pain killers and blood pressure medication but they didn’t seem overly concerned about the underlying problem and I was told that no specific examinations would be carried out until the following week. So when I asked if I could go home for the weekend they were happy to agree. Apparently when my condition was diagnosed the head of the rheumatology department phoned my own doctor to confess his mistake. Still the weekend went reasonably well, although by Sunday night I was in a lot of pain again. I returned to hospital on the Monday morning and finally on the Wednesday – almost three weeks after the problem started – I had a CT scan.
Within about an hour I had a visit from the vascular surgeon and for the first time I heard the words “une dissection aortique”. He was very sympathetic but his words and body language suggested that I wasn’t long for this world. He explained that I would need an emergency operation but this couldn’t be done in Carcassonne, so I would be transferred to the cardiac unit in Toulouse. Fortunately I speak pretty good French, so I understood his words but I couldn’t really take in what he was saying. I wanted to ring my husband to explain what was happening but wanted to get a bit more information about aortic dissection before I spoke to him, so I went on to the internet. Unfortunately the first site I saw was Wikipaedia, which, like the doctor, suggested my chances of survival were slim. Before I could ring my husband, my bed was surrounded by doctors, nurses and paramedics and I was trussed up like a chicken ready to be transferred to Toulouse via helicopter. The last thing I remember about Carcassonne hospital was all the staff together with my room-mate (a little old Muslim lady) and her family standing in the corridor and waving me goodbye.
The helicopter ride was only 20 minutes but incredibly uncomfortable, especially because all I could think of was how much I wanted a wee! Luckily we arrived in Toulouse without incident and I was transferred to the cardiac ICU, where I was prepped for surgery. Then, a bit of good news, I was told that, because the dissection was in the descending aorta, there wasn’t quite so much urgency so the operation would take place the following day. I met my surgeon, who explained the procedure and I was relieved to hear that I would be fitted with a prosthetic artery inserted through the groin, rather than having open chest surgery. The operation seemed to go well and post-surgery I spent four days in cardiac ICU before being transferred to the vascular unit. A week later I went home and appeared to be making a good recovery. Not so!
We had a pleasant Christmas and I even helped to cook guinea fowl for Christmas dinner. Then three days later, whilst watching Manchester United play Chelsea, I felt a familiar pain. At least this time I realized what was happening so I rang emergency services. 30 minutes later I was on my way back to Carcassonne hospital. We don’t have emergency ambulances out here in the country – that service is provided by the firemen (sapeurs-pompiers) - so my “ambulance” was the same Land Rover used to patrol forest fires. Extremely uncomfortable but it did the job. They were expecting me at the hospital and immediately sent me for a CT scan. The results showed that I had had another dissection just below the first prosthesis and also that two abdominal aortic aneurisms, both of which had shown up on the previous scan but which had been left because they were under 5.5cm, had grown to over 13cm in three weeks. So another helicopter ride to Toulouse and another operation the following day.
This time, after a stint in ICU, I was transferred to the vascular unit to try to find out why all this had happened. Apparently I “didn’t fit the profile” so tests were carried out to establish the cause of the dissections. The working hypothesis was Horton’s Disease, an inflammatory disease of the vascular system. I had a PET scan and a temporal artery biopsy, which involved drilling a hole in the side of my head, but the results were negative. Apparently this couldn’t rule out Horton’s however because there’s a 40% chance of a false negative. So this remains the most likely cause of my illness. Fortunately the treatment is quite simple, a long-term course of corticosteroids, so that’s what was prescribed and what I’m still taking now that I’m home.
What now? Well I’ve been home for about six weeks and am feeling much better. Last week I had a further CT scan and a consult at the hospital. The grafts are working well and there is no sign of the pleurisy which I suffered immediately after the operation. I have very little pain and am sleeping well. There’s still no definitive evidence of Horton’s Disease but the steroids seem to be doing their job and the inflammation (measured by CRP) is down to a respectable 7.1mg/l from a whopping 191.3mg/l three months ago. So I’ll be continuing the medication for the next three months at least. There are a few minor problems such as a small endoleak and a small dissection, which will require continued monitoring. I still have very little energy but I’m trying to build myself up and have put back the four kilos I lost when I was ill. I’m grateful to the French health system for the care I have received and indeed for the fact that I’m still alive. There is a tendency of course to think “Why me?” but if there’s any upside for me it’s that it happened in 2015 and not 10 or 12 years ago. The experiences of those members who had to undergo open chest surgery are horrendous and I’m just glad that medical knowledge has advanced quite a lot over the last years so that after three months I’m more or less pain-free, able to take short walks and get back to a fairly normal life, cooking, shopping, going out for lunch etc.
The whole experience has given me a bit of a wake up call and caused me to re-think my priorities. I was a solicitor before I retired so had always ensured that my wills were up to date and my affairs were in order. But when I thought I might die, I realised that I would still be leaving a lot for my family to sort out, if the worst should happen. So now I’m gradually streamlining my life to make sure that the family can deal with everything easily if I’m not around. That’s the worst case scenario though and not one which I’m contemplating. . My main priority now is for my husband and me to do what we intended to do when we came here and enjoy ourselves in this lovely little corner of France. Spring is coming, the almond blossom is out, the migrating birds are returning and the vineyards are filled with workers pruning the vines ready for this year’s wine making. I’m really looking forward to it!
Add a Comment