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 Carol Buckley on October 26, 2016 at 16:25
Hi Julie
I am not surprised your shattered what a long day you had.
Sorry it was not the result you were hoping for, but how lucky you are that they are on the ball and that it is not urgent so as not to spoil your Christmas and holiday plans.

Yesterday was not a brilliant day for me, my blood test results showed I am anaemic, some others are raised.
My GP thinks I might have polymyelgia (not the right spelling) but I am not convinced and I hope not, she had a ECG done which thankfully was fine. But more blood tests and she is referring me to the chest pain clinic, and my CAT scan appointment has arrived.
But the good news is my blood pressure is fine.
I must admit I was a bit down yesterday but moving on.

Are you on Facebook ? I have joined a group called Aortic Dissection Buddies uk, there is a lady from Paris on there, quite a lively group, I also joined the Aortic Dissection awareness group.

One of the questions I asked was what is a normal recovery, and it appears there is no such thing!

I hope you take some R & R for the next few days
Take care xx
Comment by Julie Lever on October 26, 2016 at 10:13

HI Carol, I thought I'd wait till I'd had my next consultation before getting in touch.  Anyway  I had to go back to hospital in Toulouse yesterday, which was not exactly an unqualified success.  I left home at 9am for my first appointment with my surgeon at 11.  That lasted 20 minutes then I was supposed to wait till 2.30 for an appointment with the anaesthetist.  Unfortunately she was an hour late so I didn't get out of the hospital till 4pm.  To add insult to injury the ambulance broke down on the way home and we had to be picked up by a breakdown truck.  Didn't get home till 6.30 pm, by which time I was slightly knackered.

Anyway the upshot is that I have to have another operation to mend a leak between my prosthetic aorta and the outer wall of the real one.  Apparently these leaks aren't uncommon after surgery and often mend themselves but in my case that hasn't happened.  The aorta (the real one) is still expanding so the leak has to be plugged.  It's keyhole surgery once more and I'll be in hospital for about five days. The operation isn't desperately urgent so it's being scheduled for early January.  That way I can still visit my family in December and enjoy a nice Christmas at home, which we missed last year.  I mentioned the pain in my back once more but nobody seems particularly interested, so I'm thinking of going back to my GP to ask him to refer me for a bone scintigraphy.  I had one at Carcassonne hospital when I was first admitted but was told the results were "inconclusive" then the day after they found the dissection and seemed to forget about everything else.  But the pain in my chest and back seems to be getting worse so I really want to get to the bottom of it.

As you can imagine, I'm feeling quite tired today so I'm taking it easy - no housekeeping for the time being!

TTFN

Julie xx

Comment by Carol Buckley on October 17, 2016 at 17:40
Hi Julie
Those windows sound like a mammoth task, so well done!

I do hope this Christmas turns out better for you, but you do seem to have the most amazing cardio team.

Interesting that you still have pain in the back too, I have been very tempted to go back to the hospital about mine. December seems a long wait for some answers!

Went a bit further a field and visited friends( dh hip replacement restricts us ) and today we went to a larger garden centre so a little more walking for us. Made a start on Christmas presents.

I love Dad's Army but a pain having no internet!

I hope all goes well next week

Take care xx
Comment by Julie Lever on October 17, 2016 at 10:17

Hi again Carol

We were without internet for a few days last week, which also meant we were without phone or television.  We ended up playing dominoes and watching the boxed set of Dad's Army!

Did you manage any window cleaning?  I think we must have a lot in common because I spent more than four days cleaning my windows inside and out.  It took so long because we have three very large picture windows, each of which took around two hours to clean including the pvc double glazing.  I can't complain though because the windows give us a lovely view over the vineyards and all the way to the Pyrenees.  They lead on to a large balcony where it's nice to sit in summer just for a drink or a meal.  I think that's finished for this year though - the weather's turned quite cold now, so no more sitting outside.

The window cleaning coupled with a few longish walks has made me quite tired so I must admit I've had one or two naps over the last few days.  This morning we took our dog for a walk but I had to go back to bed for an hour or so when we got back home.  Fine now so I'm thinking of making chilli for dinner.  I still don't quite figure why I get so tired or why I still get pain in my back.  After all it's nearly a year since my first operation.  Anyway I've got another appointment next week with my surgeon in Toulouse so I'm going to ask him a few questions.  I also have to see the anaesthetist for some reason - I asked the secretary whether this meant I was going to have another operation but she just said in France it was "la loi".  Unfortunately there's 2 1/2 hours between appointments so it looks like I'll be at the hospital for most of the day.  Interestingly I read about my surgeon last week - he was the first in France to do these operations by keyhole surgery and that was only three years ago, so I guess I was quite lucky that he was the one who treated me.  I'm taking part in a research project to see how well these new-type grafts work, so I'll be seeing him regularly for the next five years.

As far as flights are concerned, we fly from Carcassonne (about 35 minutes away) to Manchester, where my family still lives and where we still have a house.  The flight's less than two hours so it's not a problem.  I'm now trying to decide whether to look for Christmas presents here in France or whether to do my shopping in UK.  Last Christmas was pretty horrible because I came out of hospital on 18 December and went back in again on 28 December.  I'm going to make sure we have a good time this year xx

Comment by Carol Buckley on October 10, 2016 at 17:37
Hi Julie
My housework efforts are like everything else a little and not too often, although I am keeping up with thw washing and ironing.
I think the reason I have not had surgery in because I am in England and your in France, I did mention it to my GP and she pretty much said that is the reason, your health care is so much better.
Most of our friends and our son don't bother with health insurance when travelling to the U.K., as most of them have a U.K. address, but we don't have private health care in France,
£29 pounds is a bargain price, Ryanair ? Where do you fly to, we use East Midlands, a M & S shop will be good. I suppose as you have had a repair that is why you had no restrictions in flying!

I would also know why this happened, and even more so a little scary that it happened to you twice! I still get a dull ache across my back when I do too much, but would straight to A & E if it got worse!

Went without my afternoon nap today and spent a couple hours round local garden centre. Hoping to have a night away in the near future.
I have a gynaecology appointment at the end of the month, not sure why I can't have a hysterectomy well according to cardio, but will see what they say.

My next challenge is cleaning windows lol!

Hope the dust fairies keep at bay
Take care xx
Comment by Julie Lever on October 10, 2016 at 11:02

Hi Carol

I've taken a leaf from your book this week and started to do some house work.  It's nearly a year since I gave it a good clean and decided I could no longer just take off my glasses and ignore the dirt.  So I figure if I do about two hours a day I should be finished in about three weeks!

It's interesting that you haven't had surgery yet.  I've read that Type B dissections aren't always treated surgically but in a way I'm glad that I've had mine.  On both occasions I had surgery immediately plus treatment for two AAAs which were found at the same time.  I had keyhole surgery so the after effects weren't as bad as they were for some of the members on this site and I sort of feel that I've now got a bit more protection from possible future dissections.  I was told I could fly as soon as I felt well enough and I've been back to UK twice since to see my 91 year old mother.  To be honest I haven't worried too much about insurance because I figure, if anything major happened, it would be treated as an emergency and I'd be covered anyway.  In fact I've just booked another trip in December (£29 return) so I can pick up some nice things from M&S for Christmas.

I'd still like to know why this happened though.  I wasn't an obvious candidate for dissection and am not convinced by the doctors' diagnosis of Horton's disease.  In fact I've just been reading the story of another member, who had a dissection some time after suffering chest trauma in a car accident.  I suffered an injury in 2011, when my (rather large) son picked me up and hugged me while we were dancing at his wedding.  He broke two of my ribs which I don't think ever really healed.  I had pain for over two years which was never properly treated.  I was living in Cyprus at the time and the doctors there were not exactly helpful.  One told me to inhale the steam from boiled eucalyptus leaves and the other just said I should be glad to be alive!  So I'm wondering whether this was the start of the problem, which eventually led to my dissections.  Not that it really matters I guess - I am just glad to be alive now.

Anyway, don't do too much house work will you - a bit of dust never hurt anyone.

Julie

Comment by Carol Buckley on October 4, 2016 at 11:15
Hi Julie
I hope you enjoyed your holiday.
I think despite being so far away your hospital sounds amazing.
We do sound very alike I never walked when I could run, but that has all changed now.
I am lucky in as much as I have not needed surgery, but it is early days for me and my first check up is not till December?
At the moment I am not allowed to fly, and my husband had a hip relplacement 6 weeks ago so thinks are quite restricting for us.
I am just so grateful I can still drive.
I have to tackle the job of finding travel insurance before I can visit France again too!
I too have pain in my back, where the original pain started.
I find the lack of information on recovery infuriating but I am gleaming helpful information from this site, thank goodness I found it.
I hope your on going recovery is trouble free, and I guess all we can do is listen to our bodies, mine needs a rest now as I have done a little house work!
Take care
Carol
Comment by Julie Lever on October 4, 2016 at 9:33

Hi Carol, lovely to hear from you.  I read your message after I got home from a short holiday in Argelès-sur-mer (66).  I read your story too and it does seem that there are a number of similarities, particularly in the delay in diagnosis.  It's very worrying isn't it, when you know something serious is wrong but other people don't seem too bothered?   Luckily in my case, as soon as the diagnosis was made, everything moved very quickly and my first operation took place the day after my CT scan showed the dissection.  Since then I have to say my medical care has been excellent.

It's now nearly a year since my first dissection (20 November 2015) and I'll be having my next check-up on 21 November this year. This will be my sixth consultation and fifth scan this year.  I have to travel to the hospital in Toulouse each time - about 150km - but that's a small price to pay.  The hospital has just been voted second best in France, so that's encouraging.

The thing I find most difficult is learning to understand and accept the long-term effects of this illness.  This time last year I was doing 10-20km walks on a regular basis, gardening almost every day and doing Pilates twice a week.  Now, if I walk 3km I'm tired out.  I still suffer from some unexplained pain in my chest and I often have aching arms, legs and back.  I'm still on high-dose steroids plus another 7 types of medication, most of which seem to be there to counteract the side-effects of the steroids.  There are also still some problems with the graft including an "endoleak" at the graft site, which has to be monitored and may eventually require an operation.  Recovery is very very slow, which is annoying but of course we also have to remember that we're not getting any younger - you and I are of a similar age - so our powers of recovery aren't as good as they once were.  Still, we live to fight another day and living in this part of the world has a lot going for it.  I hope you still manage to get to your cottage in Haute-Vienne occasionally.  It's a lovely area and very relaxing.

Good luck for the future.

Julie

Comment by Carol Buckley on October 1, 2016 at 5:24

Hi Julie

I am so glad I found this group, it raised my spirits immediately to know there were people out there with the same condition!

Your story in part is so close to mine, I just wish I had been in France when my AD happened, we have a little cottage in dept 87!

How are you now?

Carol

Comment by Julie Lever on March 8, 2016 at 10:48

Hi Graeme, thanks for your post.  After reading it I read your own story.  I was impressed by the way you've managed to stay so positive despite all that life has thrown at you.  I think the love of a good woman must have helped.  I also found it inspiring the way you were able to report your feelings - both physical and mental - so honestly.  I've had a tendency to make light of what I went through, mainly because I didn't want to cause any more worry for my husband and family.  My husband is here in France on his own and was finding it difficult enough to cope when he couldn't speak the language.  My family are in England so could only imagine what I was going through.  So (for instance) I didn't bother telling them about the temporal artery biopsy done under local anaesthetic when, having drilled into my head, the doctors spent one and a half hours trying to find the artery.  It didn't really hurt but it didn't inspire much confidence (and the results were negative anyway).

As to why these things happen, I don't know whether or not our lives are pre-ordained, it just seems that whatever we do certain things are unavoidable.  I can see no reason why my first husband died of cancer, why my second husband (and you of course)  survived prostate cancer or why my mum is still going strong at 91 while my dad died aged 50.  No reason - just shit happens!  So I agree, no rocking chairs for me.  Thanks again, Julie

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