Aortic dissection & aortic aneurysm information support group

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! 

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Comment by Graeme on March 7, 2016 at 10:29

Hi Julie,

quite a story yet sadly familiar to many of us. As to getting your wills in order, yes..one does that in the first flush of recovery.. I also went out and purchased the most expensive car I could find, with the maximum airbags in it.. regretted that one later! Now, 13 years on next month I still live my life prepared for the inevitable but boy have I had some fun along the way!! My story is here:  So yes its a whole new world but do NOT let it stop you from doing what you want to do (within reason!) as resigning yourself to a rocking chair in the back garden is NOT the way to go. Happy recovery! Cheers Graeme :-)

 

Comment by Kimberlee Jones on February 29, 2016 at 17:11

I dissected over 10years ago and I am still learning new things all the time.  I understand your frustration completely. I had an emergency c-section prior to my dissection surgery(all emergent) and I'm being told that I a not even allowed to pick up my newborn, I would have to have someone place her on my lap!!!!! I was so frustrated that I was able to take care of her or my two toddlers. I still get frustrated when I get tired in the middle of my housework or when I take the kids to the museum and I tire out before we see it all. I have learned to quit blaming myself however. I guess that is progress. You are very lucky hubby is there and is understanding.  You will gain strength through the months/years and you will be able to do more. I don't exactly follow doctors orders(I pick up more than 5lbs but no too much more) like I said I listen to my body, if it says "ok girl you've done enough", I've done enough..lol

*hugs*

Kimberlee

Comment by Julie Lever on February 29, 2016 at 8:28
Wise words Kimberlee – we should listen to our bodies, even if we don’t always like what they say. My problem is that I feel guilty when I can’t do even the smallest tasks and have to leave everything to my husband. Not that he minds, he’s been great, but it just frustrates me when I can’t do things which I’ve always taken for granted. But I have to remind myself that my body’s been through an awful lot during the past few months so it’s not surprising that it’s still a bit fragile.
Of course it helps reading other members’ stories and realising that lots of other people have the same problems. In fact the more I read this site the more knowledge I’m gaining. For instance I read one of your comments that AD is often associated with scoliosis. The first examination I had when I first suffered the dissection was an x-ray, which revealed that I had mild scoliosis. It’s not something which ever bothered me or even knew about and it wasn’t something which concerned my doctor but it just adds a little bit to my knowledge about AD.
Julie
Comment by Kimberlee Jones on February 26, 2016 at 17:51

Oh my, it has been so long since my dissection I forgot how tired I got of hearing how lucky I was..lol sorry about that. Through the years I have learned what is my "normal" aches and pains. For awhile I was running to the hospital every time I felt a pain in my chest/back.(even though I had no pain when I dissected) You will also learn what is  your new normal. We learn to live one moment at a time and as survivors we learn to actually live, not just be alive. You are truly a warrior and your husband is your champion. Just know you are not alone, you will never be alone and we are always here for you.  Listen to your body, it won't steer you wrong and never ever forget to live.

*hugs*

Kimberlee

Comment by Julie Lever on February 26, 2016 at 10:31

Hi Kimberlee, thanks for the comment.  I think this is one of the times when it’s important to concentrate on the positives rather than the negatives.  I certainly didn’t feel lucky when the AD happened but I do feel lucky (a) that it was diagnosed, (b) that there was excellent medical help at hand and (c) that I’ve recovered quite quickly.  Physically I’m feeling pretty good.  This morning I went for a short walk with my husband and dog and then spent about an hour in the garden.  I felt a bit tired after but very little pain – although there’s a tendency to put every little twinge down to the AD and its after effects.  Mentally I’ve always been quite practical and pragmatic so I don’t dwell on the past.  I do feel that I’m a bit in the dark about the future.  The diagnosis of Horton’s is still uncertain and in any event the medical information available seems to be a bit contradictory.  I hope to get more information over time – my surgeon has asked me to take part in a research project to study the performance of my particular prosthesis, which means I will be examined every few months, so I intend to ask lots of questions when I go for these examinations.

 As far as my family is concerned, I think the whole thing hit my husband harder than me.  He was left at home alone while I was in hospital 150km away.  He doesn’t speak much French so he felt quite isolated and I think on occasion he really felt he was going to lose me.  He’s been really great though and is still taking care of me, doing most of the work round the house and until last week doing the shopping.  The rest of my family are in UK so my husband did a great job keeping them up to date with what was happening while I was in hospital.  They were very relieved when I was able to telephone them myself when I got home.  I had to cancel a visit in January for my mum’s 91st birthday but I’ve re-booked for a week at the beginning of April and I’m sure we’ll all have a good time then.  Generally – probably one of the worst experiences of my life and I doubt if I’ll ever know why it happened.  But it could have been a lot worse and I’m determined to make the most of my future.

Julie

Comment by Kimberlee Jones on February 25, 2016 at 22:39

Wow that was quite an adventure. You are so very lucky, so many deaths from AD are due to misdiagnosis. I am glad you are not part of those statistics and that you have found us here. I know for me, the mental healing did not begin until I found other survivors.  How are you feeling now?(Physically and mentally) How is your family handling it? Let me know if you have any questions and I will do my best to answer(not a doctor so always ask your doctor too)

*hugs*

Kimberlee

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