Aortic dissection & aortic aneurysm information support group

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

It was 8pm on 7th June 2006 and in preparation for doing a charity walk at the weekend, I decided to go on a bike ride to prepare the legs a bit (I like cycling to keep fit). 8 or 9 miles in to a 20 mile ride and I felt this incredible pain in what I thought was my lower throat. I pulled up on a country lane and got off my bike, thinking it will go in a minute. It didn't and the acute pain worsened. I ended up on the floor with my bike in the middle of the coutry lane.

  

I was found luckily by an off duty A&E nurse who was also out cycling and she called an ambulance. I ended up in Preston hospital and suffered an awful time - not the hospitals fault. I thought I had over done it, the paramedics thought I was dehidrated (it was a hot day) and nobody knew what was really wrong. Family arrived (wife & mum). After a few hours my body started to take action - sickness which was horrendous (I've been sick before but not like that) and also problems from the other end. My body was getting rid of everything. 

  

I ended up eventually on a high dependency unit, where I was more comfortable, but still no-one knew what was wrong. In the morning my wife was informed that they still did not know anything, apart from the fact I was seriously ill and my blood count was very low. THEN someone had an idea and I was sent for an ECHO. This showed a problem with the aorta and a CT scan confirmed a 5cm dissection of the ascending aorta. After appx 15 hours I had been diagnosed and it felt like I was practically thrown in to an ambulance for a blue lighter 18 miles down the road to the specialist Blackpool Cardiac unit.

  

No lie  -  we had to come off the motorway due to an accident and find another route. As we passed the accident on the hard shoulder, I suggested the paramedic should stop and check casualties. The doctor riding with us said "if any of them are in a worse position than you, they are dead  -  carry on!!".

  


Two major operations later over the 8th & 9th June (repair of aortic valve and dacron graft), including a blood transfusion and my life had been saved by the cardiac surgeon and his team; they were all superb. After 10 days in hospital I was allowed home to recover. This was helped massively by the North West Cardiac Charity - HEARTBEAT where I attended twice weekly cardiac rehabilitation sessions. I still attend the gym to use the cardio vascular equipment now.

 

Exactly one year after the surgery, on the anniversay, I completed a 110 mile bike ride over 2 days to raise money for Heartbeat (I had never ridden more than 30 mile before the op!!). They deserved it as they had helped get me back on my feet.

 

Since then I have been diagnosed with Loeys-Dietz syndrome, after initially being suspected of Marfan syndrome !!!

 

Anybody else got a connective tissue disorder and how does your doctor / consultant deal with it apart from an annual echocardiogram?

 

Does anybody know how long a dacron graft lasts or if further surgery is likely ?

 

I hope you are all keeping well. Dealing with the aftermath was hard. For the first two or so years I thought about it everyday. After 4/5 years I now only think about it occassionally and more often than not when somebody else mentions it. I hope no-one is dreading life post op, as things definitely get better, well they have in my case.

 

Happy New Year and stay positive.

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Comment by Cheryl Kerber on January 17, 2011 at 2:35

Paul, I figured some of my oddities that I developed after my surgery (like your drinking tea) came from the bags and bags of blood I had transfused during the surgery (I know that is highly unlikely - kind of like one of those crappy horror movies like invasion of the body snatchers or something like that - I got blood from someone that obviously loved fajita fries :)  ) but I'm glad their are those who can and are willing to donate blood exactly for circumstances like mine.  My husband donates as they won't let me :(  except I'm not all that fond of needles and being poked - too many for too many years I guess and I have such a high sensitivity to pain now.

I also found it interesting you went back to church.  I had just started going to a new church just prior to finding my dissection as I wanted some base for my kids.  After my surgery, I couldn't even get to church, so my time was spent from 1 - 4 in the morning while I was recooping watching some very different television preachers.

I was frustrated with how empty it all felt -- all the years of my Lutheran upbringing, even though my parents were fairly open minded (and my husband is Catholic, my brother-in-law is Jewish, and my sister-in-law says she is an Atheist) so I consider my self pretty open to others beliefs as we've had plenty of family discussions over the years.  Yet after my surgery, it just kept getting worse.  I finally started watching Joyce Meyers and Joel Olsteen and even though I always found some benefit from watching them, it still wasn't enough - I just needed to grow more inside. 

Once I was off the pain meds and found I could actually read (focusing was a huge issue on the meds), I started searching alot through the library - asking for the "perfect" book to jump out at me.  Over the last few years, I have read some wonderful books like Change your Thoughts, Change your Life: Living the Wisdom of the Tao by Wayne Dyer and several books by Sonia Choquette including her latest "Traveling at the Speed of Love" (I love how she uses flying as her analogy basis) and in the beginning I read Deepak Chopra, Dan Millman, Florence Scovel Shinn and the list goes on and on and on.  I was pleased that they all tie into a higher power (as I still have my foundational upbringing - it's just still morphing and probably will forever), but it allowed me some new insights into myself and into others as souls. 

We do all have a purpose. 

I do get frustrated watching people waste their lives though as they don't know what they are missing.  My taste in television shows, movies, and books has changed as I can quickly determine whether it's worth my time.  I'm not a snob, I just don't want to waste the time I have here.  I try to treat others better - like at the stores - not that I don't get impatient in line too, but I look at it differently.  I wasn't like horrible to people before my surgery, I think it's just made me more aware of others - you can read so much by their body language and facial expressions -- something I was too busy to notice before my surgery.

Ironically I had asked to have "higher souls" enter my life just prior to finding this site, and then one google search - and here you all are!

I don't really know any of you and yet, I do.

Thanks for being there for me, and I will do my best to be there for you.

 

Comment by Carol Pont on January 17, 2011 at 1:54
Hi Paul. I found out more from the internet than from the cardiologist. The genetics doctor is very good. I know its still early days. My sleep pattern is crazy at the moment. Mixture of pills. Sometimes i wake up just pleased i am alive. Some nights i go too sleep frightened i will not wake up. The missing ribs hurt as does the scar the most. Thank you. Carol.
Comment by Paul Finley on January 16, 2011 at 23:05

Hi Carol,

Wow 6 in the family. That is some family history. Remember you are still here and although August 2010 is only a few months ago, the anxiety will go in time. How is your rehabilitation going?

I look at the Loeys Dietz / connective tissue disorder thing, as if I now have an answer as to why me!

The only concern is that it is a syndrome in it's infancy of knowledge and if you research it yourself you may well end up knowing more than your Doctor. I have been diagnosed, but have never been examined or had any specific tests / scans undertaken to check for other problems associated with it, by either my Doctor or consultant. I just get the annual echocardiagram, but I will have to look in to it more myself as I am sure we should be having full body scans to check all are main arteries.

28/08/10 is recent - after only 5 months the whole emergency surgery / life saving / life changing event was still very much the dominant thoughts in my life. I thought about it all the time and continued to do so for at least 2 years. At the same time you are unaware that everyone else in the world is just going about their business. It is part of the recovery process. You nearly died - so many in your family history have done - and few people genuinely experience that. Lots will say they nearly died, many go in to hospital for planned surgical interventions, but few are actually saved on the operating table in an emergency situation. You have been so count yourself - if not lucky - but special, as someone who is part of a small and fairly unique band of brothers and sisters.

I have changed in different ways. You know I never ever drank tea before, but was an 8 cups of coffee a day man. I came out of hospital a tea drinker - how strange.

I now go to Church every week having not been there for two decades. Not because my life was saved but because I want to go and feel good about going. I have still never read the Bible, couldn't quote any gospels or verses etc... but it feels good to be back with my Catholic roots. Ask anyone who knows me and they would say Paul, Church ?  I don't think so. It has been so good for me.

Look at the Loeys-Dietz.org website. I think it is .org anyway. The Marfans websites are also useful as they are related conditions being of the connective tissue disorder family.

Don't worry about the emotions, accept them and don't let anyone tell you to grow up and get over it. They won't say that hopefully, well they never did with me, but just in case ignore them.

I have had this website on my PC favourites for ages and it is only recently I have written anything. It is great that you have found people who have some understanding of what you have gone through, so early in your experience, and have had the courage to make contact.

Sorry I cannot tell you too much about the Loeys-Dietz, but no medical person I have ever spoken with knows much about it.

Keep in touch, take each day as it comes, get some cardiac rehabilitation (health permitting) and thank God that you are still here. It is good to be alive!!!

Comment by Carol Pont on January 15, 2011 at 21:47
Hi Paul. I been diagnosis. In my dads family i am number 6 too have a type a dissection. I am the only one too be still alive. My emergence surgery was on 28.08.10 i am going through so many emotions at the moment. The surgery and the Loeys Dietz diagnosis. Can you tell me more.
Comment by Paul Finley on January 15, 2011 at 16:26

Hi Cheryl again!!, sorry, I haven't got the hang of this blogging yet.

 

Whilst I understand ascending aortic dissection is the most immediately life threatening condition, we seem to be lucky in that our valves can be repaired (sometimes) and the dissection replaced by a new section (out of life saving necessity). I often hear that descending abdominal dissections are not treated with surgery. Therefore we get the problem sorted (if acted upon in time) whereas you get the problem managed !!

 

I am the first in my family to have a connective tissue disorder. Unfortunately it is genetic and I have passed on to my two children, who are now on medication and have 6 monthly heart scans, as they already have dilated aorta's. At least mine went first and we found out about them. Any surgical intervention for the kids will hopefully be planned i.e. if the dilation expands,  rather than being a major shock event like mine.

 

I was very short sighted (prior to laser surgery), have very flexible joints (fingers, knees etc...), arm span slightly longer than height, slightly raised arch to roof of mouth, fairly translucent skin (can see veins etc...), scar slightly differently to others, stretchy skin (check elbows, cheeks), double jointed thumbs etc....  Oh and a dilated aorta (even after surgery) with some regurgitation (within acceptable limits). All can be part of connective tissue disorders. Othere issues that I don't have can be checked from any of a few Marfans websites (easily found on internet). There is even a Loeys-Dietz site.

 

I was sent to the genetics clinic at Manhester for screening and blood tests - searching for Marfan syndrome. This was around 9/2007. Loeys-Dietz was only discovered in 2005. Marfans came back negative however when I asked for my children to be checked, they double checked mine against the new Loeys-Dietz and it came up positive.

 

I am only 5ft 10 which is not tall for a bloke and visually most medical people immediately said no to Marfans, as I do not typically resemble the usual characteristics. However there are numerous charateristics and no two people will exhibit all the same ones.

 

You should be checked out and I do hope that your children have all had echocardiagrams done.

 

Thanks for the comments about the bike ride. Cardiac rehabilitation is essential. When I came out of hospital I could barely walk 200 yards. I then started walking every day building it up, then started at Heartbeat Charity for twice weekly cardiac rehabilitation sessions and by the time I went back to work after 3 months I was walking 5-7 miles per day and feeling great, if still a little sore and still psychological tender.

 

I also never had high blood pressure, never smoked, lived a very active sporting life etc... and to find at 39 that you had a ticking bomb was a major shock. As I said earlier at least my kids will hopefully not have to go through that, although they have to live with the knowledge and have had to make adjustments / restrictions, which I never had to !!

 

Very nice to hear from you.

 

 

Comment by Paul Finley on January 15, 2011 at 15:51
Hi cheryl
Comment by Cheryl Kerber on January 14, 2011 at 23:55

First off - you amaze me that you finished a 110 mile bike ride only a year after your surgery.  Our family cabin is 100 miles away and it takes us bare minimum 2 hours driving at 55 - 70 mph on average.  I know you said it was over 2 days, but I admire your physical tenacity.

They replaced my descending thoracic aorta and I still have a dissected abdominal aortic aneurysm (in the 4.something range) that runs from the end of the graft to just before my kidneys so biking is not one of the most comfortable of activities for me even today.  I can't imagine 2 days of biking to say the least (even though I miss it)  --- again Wow!

So far the blogs I have read have been ascending aortic events and all of you amaze me as my surgeon had told me that that is the most life threatening as the leak can fill the heart chamber and choke off the heart - basically suffocating you and you might not know it until obviously it would be too late. 

They asked me about Marfans too, as to whether it runs in the family, or if anyone had died from an aneurysm.  And since I'm only 5 foot 4 - and don't have lengthy arms - I don't fit the criteria.  Several family members had scans as was strongly suggested by the surgeon after my surgery, and so far no one has any signs of one.  I do have 4 kids and after reading Kimberlee's story - it makes me very aware of how lucky I am that none of this took place while I was pregnant.

I don't have high blood pressure and never did.  I don't smoke (which is one repeating question I get with any new doctor I see) but after trying a cigarette in 4th grade with my older sister behind our shed, I swallowed instead of exhaling (she kind of forgot to tell me to do that) - let's just say I never wanted to smoke again; but with the cost of cigarettes these days I should be happy.  The doctors don't have any answers for me as like most here on this site. 

As for you, how did they determine that you have Loeys-dietz syndrome?

Since I'm hoping this isn't a hereditary situation that I could have passed on to my kids, was there a blood test or scan info that led them to labeling your situation?

We do have hyper-flexibility throughout our family on my side (which we found out in other ways not tied to my surgery) and I know it can be amongst the signs of connective tissue disorder, but none of my doctors have been interested in figuring it out.  They just chalk it up to the unknown.

I definetly don't dread life post op, but my aneurysm lets me know it's there every day - sometimes louder than other days, but instead of dreading it, it reminds me to enjoy and appreciate life and for that I'm thankful - until I cough of course, but that fades thank goodness!

Nice to meet you and again WOW!

Comment by Kimberlee Jones on January 14, 2011 at 15:24
Incredibly story. My AD the docs say was due to my pregnancy(I'm one of the lucky 2%) I was never tested for anything, they basically took my history and my family history and said due to pregnancy. When my AD happened I'm on one of the rarities. I had no pain, no sickness, just a bit of pressure that felt like indigestion in the middle of my rib cage. It was only because it didn't go away after 24hrs and only because I was pregnant and worried about my baby that I even went to ER. Now when I developed my 2nd AD about 7 or 8 weeks after they repaired the first did I feel any pain and oh boy what pain. That dissection has no been repaired and the do a yearly CT scan to monitor it. I also get an echo every 6 months to monitor my leaky aortic valve(my repair of my valve didn't hold up too well) Since Richard and Graeme answered your questions about the graph, I will just leave with the thought...so many of our stories have the word lucky in them, the worse of the psych issues after my surgery were the if..then thoughts. If I went to a different hospital, if a different ER doc say me, if the doc never did the echo(which was just an afterthought) It took me a few years to deal with the majority of the psych issues but in a way I still deal with it just not as oftern.
Comment by Richard Deal on January 14, 2011 at 10:29

wikipedia took me to polyethylene tetraphthalate (comically named PETE) when i searched there. so assuming dacron is made of a PE derivative, it will still be around when all of our nuclear waste is no longer radioactive.

i just hope it doesn't strangle a poor mole to death in a graveyard somewhere in 20,000 years...

have fun,

r

Comment by Graeme on January 14, 2011 at 10:27

Hey Paul,

 

good blog post! Re your question on how long a dacron graft lasts..I asked my cardio specialist that last week at my now 8th yearly set of checks at the fabulous Medway Hospital cardio department.. his answer - same as others- a lifetime... no reason why it will ever break down..it' stronger than the original! Ditto for my MHV ticking and clicking away... So im a very happy camper..all my tests including an extensive ultrasound were spot on:  weight, blood pressure, treadmill fitness, oxygen saturation, and all measurments of the aorta excellent with an aortic root measurement of 2.8cm..  

 

I (and Iwould say most of us!) know exactly what you mean about dealing with the aftermath of the surgery and recovery - and as i have often said - dealing with the psycological aftermath was the hardest thing of all. It took me probably 2 years or so to get my head back together..and my life back on track.. so can assure you that you were not alone there!

 

Yes - being sick after you intially dissected - I was so sick that i ended up vomiting blood continously.. my stomach muscles were in the end totally cramped with the continual throwing up and only morphine got rid of the pain in the end.. it (stomach muscles) was also the first pain i felt when i woke up in intensive care..my chest hurt - but they hurt more! 

 

Interesting about  Loeys-Dietz syndrome - I had not heard of this before but now have read up on it - seems to be a derative of Marfans - at least you are aware of it now so that is a plus..

 

Take care, HEALTHY New Year to u 2!

 

cheers

Graeme Archer

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