Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

I am glad to have found this site/forum because I realise that aortic dissection is quite rare, so to find some fellow survivors is quite reassuring. I am now 3 months (13 wks to be exact) post op repair of a Type A aortic dissection. Before this happened to me I considered myself a fit 62 year old with no medical problems except mild asthma!

My dissection happened on 27th June 2014 at 3pm and was completely out of the blue like many other people. I was having a day off from work (nurse at the local Health Centre )and was vacuuming the sitting room. I stopped to have a conversation with my husband who was just about to leave to do the grocery shopping, he asked me if I wanted to go with him but I decided not to. Just as I had said this I suddenly had a terrific pain in my right jaw which then moved to my chest and then my back. I felt very unwell. My husband suggested I might like to lie on the bed (we live in a bungalow so the bedroom was close) which I did. I then passed out very briefly according to my husband but came round to hear my son on the 'phone to the emergency services. We live in a very rural part of Devon so ambulances can take up to 20-30 minutes to reach us- fortunately on this occasion they were with us in 20 minutes. I actually walked out to the ambulance where the paramedics checked my vital signs- a rather alarmingly low blood pressure and low pulse but good oxygen saturation. The journey to the hospital was another 35 mins and I was still in pain across my upper back in spite of being given intravenous paracetamol.

I was taken to the Royal Devon & Exeter Hospital and straight into A&E with no waiting. I was seen very promptly and eventually was sent for a CT scan and chest X-ray. The Doctor then informed me that I had a tear in my aorta. This rang alarm bells as my Father had died of a burst aortic aneurysm at the age of 68 and I was only 62!I had told the Doctors this when they were taking a history and my husband told me later that he thought it might be a burst aneurysm. They then arranged for me to transfer to Cardio-thoracics at Derriford hospital in Plymouth for surgery that evening. This meant another ambulance journey of about one hour plus. By now it was getting on for 9.30pm. I had already called my sister to let her know so she could inform the family and sent my team leader a text who replied using choice expletives which I cannot print here- she was so shocked! My husband let our 3 sons know who were equally shocked. I was remarkably calm throughout which in retrospect seems a rather strange reaction!!

I was taken straight into the High Dependency Unit (HDU) and after a few preliminaries went  straight to theatre. I had a Dacron graft repair and re-suspension of the aortic valve. After 6 hours of surgery I spent the next 2 days/nights in HDU then to the Cardio ward for 3 days. Home on day 5 as I could walk and manage stairs! Since then I have had a few setbacks and had to be admitted with an unexplained raised temperature which was put down to a virus. This has occurred a couple of times since so is rather puzzling, although I feel it is less troubling than the first time I had it. I have also had ongoing pain in my right hip and buttock when I walk very short distances which the Consultant surgeon thinks is intermittent claudication affecting the internal iliac artery due to the dissection. I have to have a CT angiogram next month to ascertain what's going on.

All I can say is that I know how fortunate I am to be here and how lucky we all are to be living in the 21st century when surgical techniques are so advanced. Living in the UK I am grateful for the excellent NHS who provide fantastic care. I am also very  grateful to my husband and son who acted so quickly on that awful day. I know I have to live with  the consequences of the dissection repair such as a double lumen, taking medication for the rest of my life and a weary tiredness like nothing I have ever experienced  but I am coming to terms with these things although at times it is quite hard.

Look forward to reading other blog posts and comments!

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Comment by Kimberlee Jones on November 27, 2014 at 16:04

GERD is Gastroesophageal reflux disease, and OHS is Open Heart Surgery. All this makes me wonder how much is due to AD, how much to other issues and how much is just age..lol

Comment by Brenda Grunwell on November 27, 2014 at 15:33

Hi Angela thanks for dogee concern. My husband does get home most days to walk her and I am doing more off lead work, Started agility which is great because mostly I just point and direct. Just odd times when on lead that when not expecting it she suddenly jolts or pulls. She is better on a halti. Long lead just means she runs faster and jolts harder I am afraid !! I used to walk her an hour everyday before AD now I find it very difficult and cannot do any inclines.

I try to walk a bit most days to help lower limb circulation but still find it difficult. Just don't have any stamina - its very odd - like having been drained - very strange feeling. I still haven't found a way to get ongoing cardiac rehab support. Like you we are not near to any local hospitals - 25 miles + is average to the nearest. BHF report that some rehab research trials are starting with patients with AAA but will be some time before reports are published. So just struggle on I'm afraid. Its a balance between health problems that went before and adjusting life after. I used to really push myself through problems before but will not do so anymore. Also take on comments from Gregory and I really should commit to something.

Yes Angela the loud heart beat and feeling a strong beat in my upper sternum - very odd but not noticed recently. After I have bloods taken I can take a strong pulse from the site in inner arm bend. I think we are all a little 'science fiction' material haha.

I still think you are doing amazingly well - is it 5 months now Angela ?

It will probably be new year now before I try to get serious with the  BHF. I did send an editorial letter but never heard back. One thing for sure is that time flies still. Never enough and promised myself to take more.

I was thinking about you Kimberlee and how difficult with a baby. Also love your personal tag - the incredibles - I think?

xx Brenda

Comment by Angela Kirkham on November 26, 2014 at 20:49

Hi Brenda and Kimberlee- I also have had more visual migraines since my repair op. I had them before my dissection for many years and just put them down to tiredness. They usually last 30mins. I also have tinnitus which I had intermittently before but now seems to be there all the time. I can also hear my heart beating loudly all the time - the physician didn't seem to think I need worry about it but I find it a bit disconcerting!! My feet  get very cold and my toes also feel "odd", a sort of numbness. Again I had the numbness before the op. The cold feet I think are partly due to taking beta-blockers. I am able to walk up to 3 miles now and the intermittent claudication in my R hip/buttock has improved hopefully due to taking the regular exercise.

I agree with you Brenda that we need to put pressure on the BHF to provide more information on this condition as more people survive. Also about your dog - I let my husband or son take of charge ours but if you are the only one who takes her/him out maybe an extendable lead is the answer ???!

Angela x

Comment by Brenda Grunwell on November 26, 2014 at 13:56

Hi Kimberlee I did have ocular migraines more frequently up to Dec last year after surgery Oct13 and they became very infrequent and less duration - just occasional visual disturbance now. Yes my eyesight has deteriorated but still manage with the lenses in my glasses from before but do need a new sight test. My tinnitus from before is much much worse- in post -op recovery it was dreadful but lessened now. What is OHS and GERDS ?

I do have issues with my left leg from dissection - poor circulation - dreadful night restlessness and pain. I get dreadful night cramps in both legs and my toes go blue or very pink with cold. I take meds for night cramps and restlessness now and not so bad.

I get lost of strange feelings / pains to worry about. I tend to dismiss them now and usually come and go on and off. Last time I went to my GP he sent me for a gastroscopy because I had mid region pain and my blood tests show me slightly anaemic and I have a hiatus hernia. Absolutely horrible procedure which certainly tested out my resilience. Tend to not go to docs now unless absolutely necessary - always come out with more prescriptions or hospital referrals and never seem to get to root of problems.

I think the worry comes with the uncertainty and this is why these support lines are so helpful in hearing others experiences. x Brenda

Comment by Kimberlee Jones on November 25, 2014 at 16:10

I'm curious ladies, do you still have the ocular migraines? I have had them since my dissection and my eyesight is blurrier at times. I also have had ear pain that comes for a min or two then goes(also since the dissection) I have had migraines all my life but the frequency of them has increased(but that wasn't until my 2nd OHS when they replaced the aortic valve and root) I have also had severe GERDS every since my initial dissection/repair. Curious who else is having a similar experience. Thanks.

*hugs*

Kimberlee(Admin)

Comment by Brenda Grunwell on November 25, 2014 at 12:11

Hi again Angela I have just come back on line to the group and read your story. Strange how events so similar. My experience was mainly on left side - I wrongly put right on part of my history. The jaw pain is uncanny - I had a strange pain down left temple to jaw 2 days before I dissected / raised temperature / pain across top of chest. As I was still getting over shingles this was all put down to another virus on top ! My buddy who I found at cardiac rehab class lives just 8 miles away and had a Type A just 3 days later than mine also had this jaw phenomenon and occular migraines increased - as I did too.

Good to share

So pleased to have made it back xx Brenda

Comment by Kimberlee Jones on September 24, 2014 at 13:25

I never did cardiac rehab, but I wish I would have taken the doctor's up on their offer. I wonder if it would have made a difference in my recovery.  I would stress the importance of genetic testing to your sons, it is very very important. Also stress to them in any emergency room situation even if it just feels like a pulled muscle in the back let the doctors know the family history. All to often death from AD is due to misdiagnosis. Not trying to scare you, I just want your sons to understand the importance of genetic testing and family history is to not only them but any children they may have also.

*hugs*

Kimberlee

Comment by Angela Kirkham on September 22, 2014 at 13:44

Thanks for the welcome. I have to say Kimberlee, I was surprised that I was not taken by helicopter to the second hospital however it may not have made much difference to my condition. As to the cause it is probably genetic as my Father had an aneurysm. I have told my sons to discuss with their G.P.'s with a view to testing. 

I am hoping to be offered Cardiac rehab locally when I see the Cardiologists in the next month or so but will check out the website.  I may try Tai Chi as I have heard many people say that it is beneficial with or without medical problems. 

Comment by Gregory Smith on September 21, 2014 at 17:48

The feeling of utter exhaustion, weariness, tiredness, is normal and wears off after a while. It was at least 2 years before I began to feel somewhere near normal again. Now after 4 years, I feel fitter than I ever was but that it partly due to cardiac rehabilitation. If you haven't been offered cardiac rehab, ask your hospital cardiac department about it. There should be a course in your area. Or visit cardiac-rehabilitation.net and enter your postcode. Also, I have found Tai Chi to be very beneficial.

Comment by Kimberlee Jones on September 20, 2014 at 11:40

Thank you for sharing your story with us Angela.  I am surprised once they discovered the dissection they didn't transfer you by helicopter(life flight) I am almost 9yrs post op now.  In the beginning I was in and out of the hospital with complications for months, so you are doing extremely well for 13weeks. Just take it easy, don't push your recovery any faster than  your body allows.  Listening to your body is so important and my 2nd rule is if in doubt go get it checked out. I do have one question, did they tell you what caused your dissection. Since you have a family history it could very well be genetic and I would say genetic testing would be a good idea(if not already done) especially since you have children. Lot of hugs and welcome to your 2nd family(that is pretty much what us survivors are, we truly become a family even though we have never met and in some cases are even oceans apart)

*hugs*

Kimberlee

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