Aortic dissection & aortic aneurysm information support group

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

Firstly it is good to find this site and share experiences, as the main feeling I have had since 'that day' is one of feeling alone, and not a little scared! My cardiac surgical team at Southampton General were brilliant, but although they have unprecedented skills and experience working with  AD, they have not, to the best of my knowledge, experienced AD at first hand, and nor would I wish it on them! 

Time for my story. Are you sitting comfortably? Then, I'll begin! (Anyone remember those words from the early BBC radio?!)

A friend wanted me to watch his Benny Goodman DVD, and since I have a home theatre sound system I invited him and another friend around to watch the film. I was quite enjoying the music and a glass of good red wine when IT happened.

How do I best remember it? A strange ripping tearing sensation in my upper chest followed by a blinding headache that seemed to start in my lower jaw. At first I tried to dismiss it, but then realised something was seriously wrong and notified my friends who were in the room that I wasn't feeling too good. They at first dismissed it as inconsequential, so I called the out of hours local NHS number ( It was by now early evening around 7pm) and discussed it with the duty GP at my local hospital in Salisbury. I had a history of high blood pressure, so she invited me to come in right away to be checked over.

My friends drove me in and I was seen quite quickly by the duty GP. By this time the headache had diminished slightly and after a few tests (BP, temp, sats, etc) she suggested I be admitted to the overnight observation ward for the night. I agreed and after some time settled down to quite a good night's sleep, apart from discovering that the chap in the neighbouring bed I had heard calling out in the night had in fact died! I was awoken by his widow calling friends and family on her mobile to notify them of the death. A doctor came quite early to examine me, and by now the headache had subsided, so after some discussion he discharged me saying he thought I had had a "little bit of sinusitis" to explain the head pain. I called my friends who collected me and took me home, where I rested.

I should perhaps explain at this stage that I have had quite a lot of hospital experience recently having spent a week in a north London hospital following a long bout of atrial fibrillation. They suspected I had had a heart attack which was subsequently disproved by an angiogram which showed no evidence of heart disease, apart from a leaky aortic valve and enlarged heart from prolonged high blood pressure. Only five days earlier, I had had a routine check-up with my local cardiology team where the doctor had suggested I was a likely candidate for a replacement aortic valve "in about two years." There was evidence of aortic enlargement that was not deemed serious enough to warrant earlier surgery.

Added to this, only 21 months earlier, I had lost my wife of over 30 years to lung cancer after successfully beating earlier breast cancer, which was only diagnosed after we had emigrated to Canada. That is another whole story in itself, but suffice it to say I had seen enough of hospitals for some time!

I spent the whole day (Saturday) resting quietly but not feeling very good, with some trouble breathing. The next day I drove one of my friends up to Heathrow to board a flight to Prague where she was due on business. I didn't let on then but was finding breathing increasingly difficult. With the benefit of hindsight, driving into one of the UK's busiest airports with a dissected aorta was not the safest option, but we were both blissfully unaware of the situation.

The next day, Sunday, I felt worse and decided to call the NHS advisory service yet again. The duty doctor listened to me and advised I saw my local doctor first thing next morning, but did not recognise the urgency of the situation. Realising I would not be able to work the next morning - I drive a school minibus for a local school for special needs kids - I called my boss and arranged to meet him to hand over my minibus so that it would be available for the next morning with a relief driver. Again I drove my minibus about 10 miles for a meeting with my boss who returned me home.

On Monday morning, I managed to persuade the doctors' receptionist that I was an urgent case, and walked the half mile or so to the surgery, where my GP again referred me back to the local hospital's A & E unit, but with a doctor's referral would not need to wait to be seen. I was having considerable trouble breathing by this time.

On arrival I was admitted to the same ward as before to await tests. I spent most of the day there having a variety of tests including chest X-ray, echocardiograph, and the like, with no conclusion or diagnosis. I kept insisting that as the pain had been in my head, perhaps a CAT scan would be helpful? The doctors were at first reluctant to agree to this, but as time went on without diagnosis, eventually at around 7pm I was referred to the CAT scanner unit. A cannula was put in my arm for the disclosing agent, and I was put in the scanner.

The technician operating the scanner kept me lying for a bit whilst she checked with the duty doctor. When they eventually came to see me, I was advised not to move but to remain where I was. I cannot exactly remember what was said at the time, but I remember being told I was very lucky to be alive and that over 95% of patients presenting with my condition were already dead! I was told I was being transferred immediately to Southampton General Hospital for emergency surgery, and asked for my next of kin. My daughter lives in Toronto Canada, and she had the unfortunate experience of being phoned on her mobile whilst driving home from work by the duty nurse who informed her that her father was about to undergo emergency heart surgery, and could she arrange to fly over at the earliest opportunity! She lives about 20 minutes drive from Toronto airport, and flew out 3 hours later!

In the meantime, I was alone, scared, and facing a real emergency. I called an old friend and told her of the situation. Her reaction was "Would you like someone to come and hold your hand?" On being told I would be most grateful, she jumped into a taxi and arrived just in time to see me loaded into the ambulance for the 30 minute drive to the hospital. 

The rest of the evening was a confusion of sounds, smells and sensations - the ambulance siren wailing - running through a speed trap at speed and tripping the camera which flashed - reaching the hospital and cold outside air before being rushed into the ICU unit - being hastily shaved by a duty nurse, using my electric razor, which I found completely clogged up with hair a few weeks later - gowned and masked pre-op technicians and nurses, and finally the duty anaesthetist encouraging me to relax whilst he gently put me under.I can remember looking around the pre-op room wondering if that would be my last glimpse of life as I knew it before drifting into oblivion.

The next few days were a blur of sights and sounds and sensations again. A face kept floating into my vision calling my name - "Hi John! Are you awake?" before drifting off again. Eventually the face reappeared, asking the same question ..

I couldn't speak, he told me, as I had a ventilator down my throat, but nodded, then drifted off again.

People and faces came and went. My daughter arrived and squeezed my hand. Nurses and doctors came and went - drugs were administered and blood taken. The pain killing drugs I recall coloured my vision a soft pink, and I felt as though I was drifting up to the ceiling. When they took blood, the world turned a delicate blue and I drifted back down again.

Nearly ten months later, it is hard to recall everything that happened but memories remain. Junior doctors huddling together whispering. I wanted to shout that I was just a human and they should include me in their discussions! Having tubes removed from my chest and neck - sucking on a gas/air tube to reduce the pain when things were withdrawn from my body - the relief of being able to breathe again for myself only to have a chest infection force me back onto oxygen - being frustrated being unable to communicate properly. I was given a child's writing tablet device to enable me to communicate, and my daughter has a photo of this where I had written "Tell everyone that I love them and am well."

It's still a bit of a blur, and ten months on I am recovering. However things did not go smoothly ...

I was moved to High Dependency for a time then into the cardiac general ward, where I got out of bed for the first time after about 10 days and learned to walk again with two pretty physiotherapists. The agony of using the commode for the first time after two weeks, which needed the assistance and indignity of an enema.

Eventually I went home after three weeks, spent a strange night at home in my own bed, and got up for a shower the next morning - bliss! My happiness was short lived when the surgical patch on my aorta started leaking just as I walked downstairs for the first time, causing pain down my arms, breathlessness and a feeling of panic and doom. Friends had just arrived to wish me well, and my daughter had to cope with them and me, and eventually the ambulance team and paramedic.

I explained my situation and they thankfully immediately recognise the seriousness of the situation and got straight onto the cardiac team at Southampton General, who prepared themselves for immediate emergency surgery. However I was back on Warfarin at the time, since I had had an artificial aortic valve inserted at the previous operation, and had to be prepared for surgery. The cardiac team suggested taking me back to Salisbury first for an infusion of a drug to reverse the effects of Warfarin, and to stabilise me for the journey back to Southampton.

The nurse administering the drug was very nervous setting up the drip, which she said would take about an hour. When I enquired why, she said the drug she was using was extremely expensive and if she got it wrong, she would cost the hospital over £3000!

After an hour or so, the effects of the Warfarin were reversed, and I was able to set off for another high speed dash to Southampton, again tripping the radar speed trap. 

I spent another 5 weeks in hospital, and had two more operations; the first to repair the leak, and a second about four days later to remove further blood clots around the heart - all open heart surgery. I cannot remember much about this time except that I had a further chest infection and had to be intubated for some time, and then had a variety of devices to re-inflate a collapsed lung.  

When I was recovering several weeks later, I discovered lumps in my groin; the one on the right being about the size of half a grapefruit, whilst the other on my left side was much smaller. These were diagnosed as seromas, being where serum from the tissues in the area were damaged by the heart bypass tubes into my femoral arteries, allowing serum to leak into the cavities caused. In themselves they were not considered dangerous, but were prone to becoming infected and setting up further complications. They were both aspirated by cannula twice, but each time the liquid serum returned within a few hours, so it was decided to operate at a later date and I was discharged me for the time being to recover.

I returned a couple of months later to Southampton, and spent a further 7 weeks in hospital after three more operations, due to contracting a hospital infection in the wounds.

I have been forced to give up my job whilst I recovered, under my GP's advice to allow at least 6 months to recover, especially after over 15 weeks in bed. I am making a slow but sure recovery, taking each day as it comes, and walking to regain my strength.

I am still scared, especially at night where I lie listening to the thump! thump! in my chest with occasional clicking from the heart valve. At first I thought it was something wrong but realise from reading on this site that it is probably due to the lack of surrounding membranes or pericardium around the heart.

I apologise for the length of this article but could have written much more. I would welcome comments and suggestions, and most of all support from anyone who cares to comment.

Thank you. I am glad to be alive and proud to be one of The Few! 

Views: 474

Tags: General, Southampton

Add a Comment

You need to be a member of Aortic dissection & aortic aneurysm information support group to add comments!

Join Aortic dissection & aortic aneurysm information support group

Comment by Gregory Smith on March 26, 2013 at 15:45

John said, "Incidentally, has this group ever arranged a get together? I know such events could be seen as an exchange of ailments and symptoms (heaven forbid!), but I would like to propose a simple social such as a good dinner out someone close by for any who might be interested. I note that three of us are based in southern UK (Sorry Timo and Kimberlee!) so perhaps this might be of interest. At the very least, we could try to synchronise our ticking heart valves for the entertainment of the waiters! And, as an afterthought, I would like to invite some of the cardiac staff I came to know at Southampton General to join as my guest as a way of saying thank you. Any thoughts, people?"

I've not heard of any get-togethers but that's not surprising as survivors are few and far between. However, since there are at least 3 of us in the South it seems like a good idea. Incidentally, my local GP once told me he had 3 other patients who all had had ADs.

Comment by John Greenstreet on March 20, 2013 at 13:49

Hi Everyone,

Firstly I should like to add how much I appreciate what you have all written - Elaine, Gregory, Nicola, Graeme, Kimberlee, Patrick, Gary and Timo - so thanks to you all. It is really good to know there are people out there who know what I am going through and feeling because they too have been there, done that, and got the tee-shirt!

My GP listened very carefully to me when I expressed my fears about my heart thumping and keeping me awake at night, and my surgeon was excellent in his role but no one up to now actually 'knew' what I was feeling.

I can now lie at night listening to the thump thump, and feel quietly reassured that the ticker is only carrying on with its function, but without the 'shock absorber', which is the pericardium, I think!

Well-meaning friends and relatives think it is "time to get on" with my life, but after just a year from the initial emergency surgery, I do not yet feel strong enough to return to 'normal' life, much as I would like to. I have decided therefore to use the cold days of winter to basically lie low, eat sensibly, exercise regularly, and get my strength back in my own time. The motto here is "listen to your body", which I have been told by those that know.

It was a year ago last Friday that my aorta dissected, and a year ago last Monday that I had my first op. It is good to know that the chances are good for my surviving for at least another ten or more years.

Thank you all.

Incidentally, has this group ever arranged a get together? I know such events could be seen as an exchange of ailments and symptoms (heaven forbid!), but I would like to propose a simple social such as a good dinner out someone close by for any who might be interested. I note that three of us are based in southern UK (Sorry Timo and Kimberlee!) so perhaps this might be of interest. At the very least, we could try to synchronise our ticking heart valves for the entertainment of the waiters! And, as an afterthought, I would like to invite some of the cardiac staff I came to know at Southampton General to join as my guest as a way of saying thank you. Any thoughts, people?

Comment by Gregory Smith on February 27, 2013 at 16:47

John, I, too, was taken to Southampton General as I live close by. I remember absolutely nothing about my acute type A dissection until I woke up on the general ward some 4-5 days later, but my wife tells me that the consultant had advised her to gather the family around and say their last goodbyes. That was 2 years and 9 months ago. This week I went skiing in the Cairngorms and walking in the highlands of Scotland, and this year I'll be 67. Life goes on and if you can put your fears behind you and concentrate on regaining your fitness, then life can be good.

Comment by Nicola McMeekin on February 27, 2013 at 15:23

Hi John,

Wow,y ou have certainly been through the mill, congratulations on surviving and finding this site.  Yours is quite a story and it is great that you are recovering.

I am 18 months post type A dissection, it has been a long road with plenty of ups and downs on the way.  All that you describe feeling is familiar and 'normal', particularly with the amount of surgery and trauma you have been through.

Good luck with you recovery, stay in touch and let us all know how you are,

Nicola

 

Comment by Graeme on February 26, 2013 at 11:45

John

 

now THAT'S a story! Mine was pretty good but yours I think now takes the lead! Just to let you know that I had a train wreck as well but I am now (proudly!) approaching my ten year anniversary for my AD in 28 days time (St Georges Day - but whose counting! ;-) so for all us few ..there is a long and fruitful life ahead of us...

 

cheers

 

Graeme

Comment by Kimberlee Jones on February 24, 2013 at 19:17

wow, first I'm impressed about how much you do remember. I remember so little. Sounds like you had a long hard road to travel, one with many hill, twist and turns. The good news is that you made it! In a lot of ways the on the road to recovery the mental recovery(at least for me) was the hardest and the one after 7yrs I'm still traveling. The good news is that it does get easier. The best advice I can give is trust your instincts, if they tell you something is wrong, get it checked out. If nothing is wrong that is great but I would much rather be safe than sorry. Especially since my only symptom in the beginning was a tiny bit of pressure(what I thought was indigestion due to pregnancy) in the center of my chest. So listen to that little voice in your head(your instincts) most of the time its right.  One last thing, don't apologize here for the length of your post or for any other reason, we are here to help you and the only way to do that is for you to express yourself fully and completely.

*hugs*

Kimberlee

Comment by Patrick Gethin on February 24, 2013 at 13:50
Welcome. I ham sorry to hear that you had so many problems. But thanks for making me realise that I had it easy. I don't remember anything from the point someone said do you need an ambulance till the point I was waking up after the operation
Comment by Gary Davis on February 24, 2013 at 13:16

John

 

Welcome to our little band. A very good blog of your fight to beat the "silent killer". I too went through my type A and arch repair at Southampton. It is a long road to make a full recovery, both on the physical and mental asspects following an AD. After 2 1/2 years I am still on that journey, but everyday is one another step forward. This is a good place for advise or to just late off steam, always someone to help or support you.

 

Cheers

 

Gary

Comment by Timo Söderlund on February 24, 2013 at 5:01

Dear John. Reading your story makes me remember. I was though lucky to only have to go through one open chest surgery. I am now 5 months past my surgery (1 oct 2012). Having read all you have gone thorugh it is obvious that you are a very strong person with a positive view on life. I am also scared, not every day or night. Having met anonther AD patient a month ago (we have now met twice), and also joined a small "regional" facebookgroup for AD patients in Sweden and Denmark, has given my personally very much ease and comfort. Knowing that you are not alone, knowing that many of "us" share the same fears, and knowing that many of us are still doing quite well struggeling on in our daily lifes, with sports, jobs, families - all that gives strength and makes it possible to move focus away from my own body to more positive things. Also having got a puppy has helped me alot not to get to focused on my heart, but instead on someting else. John - i wish you all the best. A lot of hugs -  Timo Söderlund

LIFELONG MEMBERS

Our AD Facebook Page!

Visit Our Facebook Page/

OR - Post our Website Link to your Facebook Wall Profile
If you have the QR decode app in your smart camera phone - hold your camera phone over this QR CODE and it will automatically take your smart phone (*if you have the internet enabled on your phone) to our Facebook Page!

 OR - Use the QR Code above

What's a QR Code??
Download QR Reader App.

Our Twitter Feed!

Events

© 2019   Created by Graeme.   Powered by

Badges  |  Report an Issue  |  Terms of Service