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

Sunday 26th September 2010, a lot changed that day.

Here is my blog, I hope you make it to the end without being too bored!
 

A very nice hotel, close to Winchester in Hampshire, is the venue for my weeklong conference, checked in and before dinner the delegates meet for drinks in the bar, all is well with the world! The conference dinner was at 7.30 in the evening and I had been sitting down at the table chatting over the first course for about 10 minutes, when BANG I get a sharp pain in my upper left chest. I leave the table and walk around for a few minutes trying to understand what is going on. I returned to the table, as the pain is less intense, but now I can’t get my breath. Up again, trying to figure this out; I had a Haemo-pneumo thorax (collapsed lung with bleeding) about 15 years ago on my right lung, I was concerned that my left lung had just done the same. I know I have to do something, I have brief chat with my colleague and friend Mike who is attending the same event with me and both conclude I need to get some help.


The hotel has the number for NHS direct who I call and speak with a very nice nurse, who takes me through a series of questions that conclude with “ you need to speak to a Doctor”, she will arrange for the local out of hours Doctor to call me back. By now I am still having breathing problems, but less pain and this is what I tell the Doctor when she calls be back 15 minutes later. She is not sure what is going on but thinks it best I get it checked out and she will send an ambulance to take me to the local hospital A&E for a check over. The ambulance arrives about 20 minutes later and the crew connect me to an ECG and take my blood pressure, nothing untoward, but my blood pressure is a little high. So off we go to Winchester Hospital for a check over. My wife through all this is asking should she drive from my home in East Sussex and come over “no I’m fine, stay with the kids” is the answer, “nothing to worry about”.


At Winchester A&E they are not sure what’s going on, as I am still complaining of chest pains and breathing problems, but now I am getting some discomfort in my back. They check all the normal signs for a heart attack, as there is no clear evidence of a lung problem, they even give me the spray under the tongue, no effect. The conclusion is to keep me over night and take bloods in the morning to test for a heart attack. So at 2.30am I get to bed. The tests in the morning come back negative, the pain and breathing have eased and so I am discharged at lunch time. I return to the hotel, take a bath, relax and head down for dinner again in the evening, telling everyone I will be back in the conference the next day. Laying in bed at 11pm, I start to feel all the problems I had the previous evening, but this time a lot worse, especially the pain that stabs from my chest through to my back, the sweats have started and I have palpitations now. I grab some stuff together, call Mike and he comes to help me hobble to the hotel reception, ”let’s call 999” is the request to the man on the desk. When the paramedics arrive, I can tell by the look on their faces things don’t look good. So as the lift me into ambulance I call to Mike “call Jan and let her know that I’m OK and I will speak to her later”.



This time on arrival at Winchester I am non-stop through A&E and off to have a CT scan, this concerns me. Once the scan is finished I’m taken straight off to the ward and placed in bed, given some pain killers and told to get some rest. It’s 2.30 and I am exhausted. BAM, I am awoken by the curtains flying back, two Doctors pushing carts and trolleys, Sister and nurse in close attendance! “What’s going on?” I ask, “We need to do some tests urgently”. I lay there as they carryout and ECG and this time an ultra scan of my chest. Then the Doctor gives me the news, I have a dissection of my aorta. “So this is serious?”  His response is that the mortality rate is 2 to 3% per hour after the event. OMG! I have no time to ask why they did not find it last night, as I am being whisked away by another Paramedic team, along with a Sister and Doctor to be transferred to Southampton for emergency surgery. I do get a request to the Doctors to call my wife, “but try not to worry her” And so I disappear into the night with blue lights flashing and two tone horns for the 30 minute ride to Southampton General. I later learn from my wife that the Winchester Doctors method of answering the delicate question of is he all right is “well, when I saw the scan and looked at him, I am surprised he is still alive, you need to get to Southampton quick” Thanks. My wife and young kids leave at 3am with a friend to drive the 100 miles to Southampton.

 

 Arriving at Southampton I was taken directly to the Cardiac High Dependency Unit (HDU) where the duty Registrar and his team were waiting for me; leads in, drips on and monitors beeping in 5 minutes. OK now what? The Southampton Cardiac team had already reviewed the CT scan online from Winchester and agreed that it would be OK to take a few days to get me stabilised before they take the next step. The dissection is in the arch. It is time for both sides to take stock.  I am so relieved to see my family, they expect to find me at deaths door, not sitting up drinking tea!

 

 Due to the location of my dissection there is a lot of discussion as to whether it can be treated medically or needs surgery. Hypertension seems to be the basis of my problem, but more worrying issues come to the surface, but at this time the first thing is to get my blood pressure under control. One thing that keeps reoccurring is when I see a doctor, they all seem to say how lucky I am, when I finally ask why, I am told that where my dissection has occurred they would have expected it to have travelled all the way down the descending aorta, not just stopped. Something had prevent this and had limited its effect so far.

 

On the 11th October, Mr Livesey, my cardiac consultant arrives to see me and says that the team have reviewed my latest scan and my dissection is growing slowly down from the arch into and around the ascending aorta, they need to fix it now. OK, how big is the surgery I ask, as big as gets here comes the reply. The surgeon who will lead the team and fix the dissection will be Mr Markku Kaarne, a specialist in aortic surgery. So on 14th October I enter theatre at 7am.

 

At 3pm in the afternoon my wife calls to see if I have left theatre yet, no. 4pm, no. 5pm, no. finally at 7.30pm I came out of theatre and into cardiac ICU. When my wife arrives at 9pm she finds me surround by a number of worried doctors, I'm leaking 4 times the amount of blood they expect and there is real concern something is leaking inside. If they cannot control the bleeding soon I have to go back to theatre. The ICU team were fantastic with my very worried wife and family, with the nurses saying that “they would not see me gone to me on their shift, don't worry.” During the night the doctors get the bleeding to slow and I am spared the risk of second surgery. I now have a 26mm Dracon tube from just above left/right coronary arteries right over the arch to the top of the descending aorta. The Aorta around the Brachiocephalic, carotid and subclavian arteries was good so these could be attached to the Dracon tube as an “island”.

 Friday midday I start to come round, just as they are pulling the tube out of my nose, first thoughts are that's not nice, the second is, I'm still here, the third is Water! Give me water! I can suck those little sponge swaps dry in 5 nano seconds! My sister keeps dipping them in my mouth until the nurse catches her! I have no voice! The vocal cord nerve that sits behind the aorta has been damaged during the surgery, no one knows if this will come back or is permanently damaged. When I get some form of voice back I sound like Joe Pasquale!


2 days later the chest drains are out (isn't that painful) and I go back to HDU again. As someone who could always sleep anytime, anywhere, the long nights when sleep just does not come bordered on being a nightmare. No amount of sleeping tablets could bring relief. It took nearly 3 months to get back to something like a normal sleep pattern.  The towel "teddy"l helped, I guess we all had one of those, still use mine!

 
3 days after the op I am out of bed in HDU when the alarms on my monitors go off. My heart rate is climbing 80, 85 and still going. I'm put back to bed, rate now 100 and still increasing, now I'm worried. 120, 125 "am I dying nurse?" no I have Atrial Fibrillation. 140 beats a minute, 160 and my body feels if it is vibrating all over. Amiodarone is fed fast by drip as my rate nears 200...OK it's coming down. 6 hours later and I'm back to 70 beats steady. It seems 25% of heart op patients suffer this event shortly after they go through surgery, the hearts why of saying it does not like to be pushed around.


After being placed in the normal ward, on 21St October Mr Kaarne comes to see me and says all is well. I am not sure what they do in Finland to say thank you for saving my life, but my wife gives him a big hug from us. The look on his face was a picture!  I am discharged, 7 days after my op, so I go with my bag of medication and lots of thanks to the wonderful staff at Southampton General.

 

 22nd October I am back in hospital. We spent the night at a local hotel and from about 10pm I was in agony with a pain in my lower left side. So at 6am I went to A&E and by 8.30 I was back on the ward after a CT scan showed I had fluid trapped under my lung. Another 7 days in hospital on antibiotics cured the problem and I could finally go home to start the recovery process.

  

Post hospital, observations and thoughts.

  

It’s now 8 months post op for me. I have been back at work since mid January as a General Manager of an aerospace business unit of a large PLC. I went through a staged return to work programme, that help me deal with all the strains of coming back. The company was excellent in understanding my needs and support. I am now travelling into Europe by air with no problems.

  

The recovery period was tough, but with help of my great GP, we got through it. My GP saw me every week, doing bloods, sorting out side effects and answering any questions or concerns I had. We set up a blood pressure monitoring system, which was very useful as after my first follow up at Southampton they took me of some of my medication. Wrong. BP went up and up. This was spotted in my monitoring and my GP got this rebalanced again. I still monitor everyday; there is some comfort in knowing my BP is under control.

  

The big thing for me was I never expected my emotions to be thrown so far off balance. I would burst into tears for any little reason. I had really black days, like so many here. As my GP said, we go through Post Traumatic Stress and we need to understand that. But, as time goes by you deal with it and the black days get fewer and fewer. We had a real test when my wife’s mother died in January this year from a rupture of the aortic root. We went off to Florida for 3 weeks at Easter to spend time as a family and get back to levels of normality, this really did help.

  

What does the future hold? After my AD I started to look into the subject far more and piece parts of my family medical history together and now know that I was always at risk. My father at 85 had died from a rupture of the abdominal aorta, while in hospital for day surgery for what he was told was a suspected hernia. They missed his AD too. When he was younger he also had a collapsed lung, like me. He was being treated for hypertension as well. All the signs were there for me to see that I was at risk of a potential problem, but like many I took no real notice. Life changes have to be made now.

  

I have not suffered any real side effects. I have odd pains, aches, oh and of course the neck aches some others have after this. I find I get tired more often than before and I have weak pulse on the right side of my right arm, but no real issue with this. I now find it more difficult to sit and concentrate on reading a book, when before the op I could read for hours and hours, maybe the HCA has caused this. Slowly my concentration is getting better. BP is under control, on good days sitting chilled out I go to 95/45, but normal is 110/65. After working with an ENT consultant in Eastbourne and a speech therapist I have some of my old voice back, but may still need surgery for any further improvement, but I can live with what I have.

  

There are days when I wonder about my own mortality and how long do I have? You just have to deal with that, and in fact this does not seem to worry me as much anymore, what will be will be!

  

To end, I am so grateful to the skills and dedication of the medical team at Southampton and in particular Mr Markku Kaarne, who got me through this ordeal. My wonderful wife, no words can say what I am feeling for you.

  

So, what about a campaign that places a poster in every A&E department and doctors practice that says “WHAT ABOUT THE AORTA DOC?”

  

Thanks for reading.

  

Gary Davis (54 at AD event)

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Comment by Cheryl Kerber on June 23, 2011 at 22:12

Bored --- No ---- Wowwed --- YES!

I agree -- not sure why the medical field hasn't figured out that massive or unusual chest pain and such could be anything but a heart attack?  I would think they would have learned about the aorta?  and it's not like people haven't had aneurysms and dissections before --- maybe they didn't survive --- buttttt -- it existed.  And if you pass the heart attack tests and the catscan --- then fine - send us home -- but it still floors me they don't even consider it sooner.

Congrats for surviving --- it's definitely an experience to write about -- so no boredom from me!!

Cher

Comment by Tim Manning on June 22, 2011 at 18:49

Gary,

I'd like to echo Kimberlee's comment - your post is a great read.  I'm just over three and a half months post-op, and recognise much of what you say in terms of the emotional impact and the worries about mortality. But all that is easing.

One thing the Spanish surgical team drummed into me was the need for BP monitoring, and I do mine twice a day. I'm pleased to say that our figures aren't that different, and recent research suggests controlling it successfully really has a positive effect on preventing further problems and survival rates.

Incidentally, I deal with some of the worries about mortality by reminding myself that I'm now monitored much more closely than most people I know, and that given all my medication, I'm now less likely (at 56) to be affected by many of the cardiac events which hit men of my age group.

I think we all recover at different rates, and there is a point - for me it's really been most evident in this fourth month - when there's a shift between being trapped inside an uncomfortable body which doesn't feel quite like your own, and suddenly finding it's back to being you, but with some symptoms you'd like to be rid of.

Best wishes,

Tim

Comment by Kimberlee Jones on June 22, 2011 at 15:08

Gary,

 

A great read, I still get upset that a ct scan hasn't become the norm when someone comes in with heart attack like symptoms and the test show there is no heart attack.

 

I have little to no memory of any events after my 2 surgeries. My first memory I was already out of ICU and in my own room. All I can remember is wanting to know about my daughter(I had c-section day before my AD surgery).  Someone was kind enough to leave a picture of her on the table beside my bed, she was so tiny and all my thoughts, concerns and questions were about her. Funny thing is when I woke up(my first memory of it) there was one person sitting in a chair in my room, the ER resident that I saw when I first showed up at ER.

 

I also developed Atrial Fibrillation, but my heart decided to wait until 2 weeks after I got home to show it's dislike of being messed around with. Luckily for me when I arrived at ER the same doc was there and even though I wasn't his patient this time around, quickly informed the doc that had my case about me.  This same doc was there when I went back yet a third time, for a leak that developed on the other side of my aorta. What is even funnier is that this time I actually called 911 and had an ambulance pick me up(the other times I was driven) The EMT's quickly stated after I told my story briefly, that yeah they heard of me.

The recovery process is a slow one and for many it's the mental recovery that takes the longest. Here I am 5 yrs later and even though I will say I'm recovered mentally, I still have my "days". Thanks to Graeme and this wonderfully site the mental recovery began. I found talking with others who "understand" is the best medicine for the mind.

 

You sound like your doing great and are just where you need to be. Graeme is right though, take care, take it easy, listen to your body and you will get better.

 

*hugs*

Kimberlee

Comment by Graeme on June 22, 2011 at 8:39

Gary,

 

yeah...I'm for that..what about an even better poster..."AD is real and it's not Anno Domini"? Yes, like many of us so much of lady or mr  ( :-) ) luck plays their part in whether we live or die. Gr8 read mate. Funny bout the water eh.. I also remember it as one of the most vivid memories i have as did Kev in his blog.. I still to this day now treat a glass of water as a huge treat and not just a glass of water (you can imagine what I think of a pint !)
asian_smiley.gif - (1K)

take care, take it easy, lisaten to your body, and you will gradually get better.

 

cheers

 

Graeme       

Comment by Kev A on June 21, 2011 at 18:42

Cracking read Gary 

Great Blog (Loved it - so to speak)

 

Give me WATER! I hear you on that buddy. God I'm still not over that thirst - in fact, just the thought of that period makes me thirsty right now!

 

I find it strange how a lot of us totally underestimate how serious our condition is despite that 'BANG' pain and the tag along breathing issues.  Right up to blacking out I never thought it was anything to really worry about.    

 

As you alluded to, it's also somewhat worrying that there's something seriously lacking within some A&E depts.  Not sure how things are 'darn sarf' but around these parts all Cardiothoracic operations have been farmed out to a purpose built unit.  This is all well and good (esp in my case being so close) but it has to leave a bit of a 'knowledge gap' at some A&E hospitals, were staff have now been transferred away from.  I was diagnosed in a flash once I finally got carted off to Castle Hill Hospital.  Whilst the A&E ‘Acute Assessment’ team were stumped, once I convinced them I hadn’t taken any drugs! (Top Gear Top Tip – don’t get dressed in the dark!)  

 

As our 'Aussie Chief' posted the other day stating that AD is the 15th biggest killer in the US – you have to imagine it’s a similar stat in the UK and other western countries.  I’m all for the ‘What about the Aorta Doc?’ or any campaign for that matter.

 

Hope you never went on any those rides in Florida! 

Thinking out loud for a moment – can we ‘AD people’ go on a rollercoasters and such? 

Comment by Richard Deal on June 21, 2011 at 17:53

blimey! what a great read! another amazing story where lady luck played her cameo role once more... i related to the swabs bit, as the only nurse i was convinced wasn't trying to kill me in intensive care was the one swabbing my lips whenever she thought she could get away with it... it is also amazing just how much all of us owe to a very few people - in your case Mr Kaarne and the team of nurses and staff at Southampton Royal.

i am almost 3 years post-op and have resumed "normal" working activities. i do not travel anywhere near as much as i used to, but at least i still travel when the tedium in the office gets too much!

thanks for the share - if you need anything don't hesitate to get in touch!

take care,

r

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