Aortic dissection & aortic aneurysm information support group

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

So how did I become part of this special community?

 

It all started last November. I had been to Houston on a business trip and then visited my parents the weekend I got back. As I was still fairly jet-lagged, my wife had driven us to and from Shropshire, and we returned home late Sunday afternoon. Late that evening while reading, I suddenly had a very sharp spasm in my stomach and lower chest. For a few moments I couldn't breathe, and after the pain passed, I was left with aching muscles across my stomach. I was thankful that it did not appear to be a heart attack, but I told my wife what happened just in case. Through the night my heart pounded, and I did not sleep a wink.

 

Next day, I visited our local surgery and the GP checked my BP, listened to my heart and took some blood tests. As nothing appeared seriously amiss other than a slight temperature, she diagnosed gastric flu and said to rest and take paracetamol. The blood tests came back later that week, indicating I had an infection, so the GP felt her initial diagnosis was correct. Although the temperature dropped as the week progressed, my heart continued to pound and I was feeling unusually cold. The following Saturday I visited the out of hours GP for a second opinion. He confirmed my temperature was now normal, but noticed a loud heart murmur and recommended I see my GP again. I saw a different GP the following Monday, and he noted the murmur was very loud and new (not mentioned in my records) and called Worthing Hospital to book me in for tests. At Worthing, I was feeling more optimistic when the ECG was fine, but with such a loud murmur, the duty consultant skipped the chest x-ray and sent me for an echocardiogram. The technicians immediately saw a large amount of regurgitation at the Aortic Valve, and a suspicious shadow (flap) in the Aorta beyond. After a review with the consultant cardiologist, he gave me the good and bad news… The good news was that I was a survivor and in a minority who had lived that long since having a Type A AD. The bad news was that I urgently needed open heart surgery, and this would be risky. After breaking the news to my wife, I was blue-lighted to the Royal Sussex in Brighton, where a CT confirmed the diagnosis. My wife and I spent a short time talking to the surgeon and then to each other before the nurse gave me a sedative to help me rest for the night.

 

The following morning, I was prepped and taken into surgery. 7 hours later I was resting in the high dependency unit, and a few hours later, they woke me up. My first thought was thank god I was awake, and amazingly, in no pain. It was uncomfortable breathing with the tube, but a short while later it was replaced with an oxygen mask. I realised they had replaced the Aortic Valve, as I could hear the tick tick of my new mechanical valve. Based on what the cardiologist had said the day before, I knew it had been a large job. A little while later I spoke to my wife and father on the phone, which was amazing.

 

After a sleepless night I was helped by the nurse to sit in a chair the next morning, and had some breakfast! I don’t remember too much of my wife and father’s first visit, but they tell me I looked much better than they expected. After another night in the HD unit, the wires were removed and I completed my walking test by walking to my new bed in the recovery ward. The next day, I did the stairs test, and by the following day was well enough to walk to the day room and watch some TV. Watching TV and talking to the other patients really helped me come to terms with the shock of what had happened and reconnect with life outside. The daily visits from my wife, children and parents, even more so. 6 days after surgery, I was discharged and my wife drove me home. I have to say that the whole team at the Royal Sussex were fantastic that week, and I really felt I was in good hands.

 

Sitting in the living room that first evening felt great. Being home brought new stresses however. Sleep was not a pleasant experience, and without the sleeping tablets the nurses gave me in hospital, it was short and disturbed. Not having the comfort of a medical team to hand to check your stats every 4 hours and ask about the strange new sensations in your body, was also distressing at first. The afternoon of my first full day at home, I suddenly became disoriented and could not remember what had happened over the past 7 days. Worried that I may be experiencing a stroke, my family called 999, but by the time the ambulance arrived, my memory and sense had returned. I was taken back to Worthing to be checked out, but was discharged a few hours later and told such sensations are quite common following cardiac surgery. Very relieved, once again my wife drove me home, this time just beating the falling snow (by the next morning, we were snowed in)!

 

The following days and weeks passed slowly, but were helped by family visits. My birthday and Christmas were subdued, with my wife and I often in tears as we thought about what had happened, how our lives had changed, and wondered about what the future might bring. The Internet is a fantastic source of information, but it can also expose people with unusual conditions like this to fragmented knowledge that can be extremely worrying and stressful without knowledgeable doctors to provide context and assurance. Conversely, it can connect people with similar conditions who otherwise might never meet others going through the same experience.

 

As 2010 became 2011, my daily walks became longer and more enjoyable, and I began to reconnect with friends. The six week check went well, and I was given the green light to drive again and return to work when ready. I’m now walking 2-3 miles a day, and have my cardiac rehab workout once a week in Shoreham. I find that I feel much better in mind and body after some exercise, although I do get tired much more easily than I did before the event. I go back to work next week, initially part-time. My employer is a very large US energy company, and my Manager, Company Doctor and my colleagues have been very supportive. It will be good to get back to work, but I have no illusions that it will not be hard at first.

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Comment by David Wenzel on February 26, 2011 at 13:08
I agree with Kimerlee, Jodi. As I said in my "story", I did not trust the diagnosis from my first doctor, and if I hadn't saw another doctor, I almost certainly wouldn't be here today. However, to temper that slightly, once you know you have some problem inside, then you cannot help feeling every litte ache or pain is related, and this can make you a little paranoid. I've recently started back at work, and am going on regular geocaching hikes with my family, and this has really helped improve my fitness, both physically and mentally. Bottom line, if you feel something is not right, keep asking doctor(s) until you get an answer that makes sense to you. Hope things go well.
Comment by Kimberlee Jones on February 26, 2011 at 1:30

Jodi, trust your gut, if you body is telling you something..listen. If the doctor's won't listen, seek a 2nd opinion. *hugs* I hope things get better for you.

 

Kimberlee

Comment by jodi bevan on February 25, 2011 at 21:54
it is so amazing to hear all of the stories involved with this particular diagnosis and some peoples outlook so reassuring. i wish you luck. i have not had surgery for my dissection; found 1 yr ago. i have been to numerous dr.s visits complaining of fatigue and achiness in my back but tests are normal they say and make me feel crazy or like i am making this up. i am thankful for this site and wish to hear any info to keep myself sane
Comment by David Wenzel on February 10, 2011 at 20:40

Thanks David. It's strange but helpful to read the blogs and comments from those further down the line (post-op) and also those like yourself, just out of hospital. Hope you are enjoying being home again and have a speedy and bump free recovery.

 

It's also really interesting to read and compare people's experiences with one's own, as this provides a much greater level of granularity in assessing one's own situation (although at the expense of statistical significance and medical expertise). As a case in point, today trying to fold the mirror on my car in a tight parking space, I had a twinge in the my left waist which felt like a very mild and localised version of the pain I felt during my original AD. The pain passed quickly, and it was nowhere near the Aorta, but I'm still concerned that I just further damaged the lower part of my Aorta by the unexpected straining. This evening, I read Richard's comment last October where he had abdominal pain following some DIY, which sounds a bit similar. Assuming nothing goes amiss in the meantime, I'll mention it to the cardiologist when I see him next month.

Comment by David Vaughan on February 10, 2011 at 19:52
Glad to hear you are doing so well.  I am just two weeks post op and came home yesterday so I know exactly how you felt when you first came home. I find it quite difficult to adjust to life without being frequently monitored by the medical team.  Every ache and pain seems to take on much more significance when you are out of hospital.  The beating of the mechanical valve does become quite re-assuring after a while.  There is still a long way to go but hearing about your recovery is really encouraging.  I shall be watching with interest as I follow in your footsteps.
Comment by Cheryl Kerber on February 9, 2011 at 18:05

First off --- a walk outside sounds phenomenal right now (I think my 2 dogs would agree) --- it's been 0 here for a couple days with -0 temps when you factor in the wind -- not to mention the over 6 feet of snow I have to look at outside --- I've got major cabin fever and am looking forward to spring (at the rate we are going now - probably won't see that til June)  :(  But I can at least look forward to it???

Second - there is never too long of a blog --- there is so much involved with the experience - I'm surprised you kept it as short as you did!

Third -- I find it very interesting that we all describe our AD's as ticking time bombs inside.  It does hit it right on the nose doesn't it.

I appreciate all of you and am thankful I have found you!

Cher

Comment by David Wenzel on February 8, 2011 at 13:38

Just back from a walk around the village and shopping trip in town on a lovely sunny February morning. All your comments are very much appreciated, and coming from survivors 5, 6 or 8 years after the event, provides a great perspective when it's all still a bit fresh for me. I generally take things in my stride and can handle the changes to my lifestyle this has brought, but it really is the future uncertainty around "the ticking bomb inside" that occassionally pops into my mind and can get me down. The doctors in Brighton were very reassuring about this at my 6 week check, and this helped both my wife and I to be a lot more positive since.

 

My apologies if I went on a bit in my original post, but my wife was watching something on TV and I felt in the mood to jot it all down last night! Now, time for a cup of tea I think! Take care all.

Comment by Graeme on February 8, 2011 at 9:56

Hi David

 

Good result - if there is one in this crazy post AD world of ours - but you seem to be right on top of it at this early stage and that is VERY good my friend. MY 8 year AD anniversary approaches next month (St Georges Day at St Georges Hospital) and not a day goes past when i thank the medical system in this country for my miraculous survival - and my wonderful wife too! Tiredness is a by product that will unfortunately stay with you but thats a thing you learn to pace yourself with and is not really an issue once you accept it... your new click. tick. thump! is also something that you come to an uneasy truce with and even eventually even get to miss if its is muffled in bed or in some other circumstances... all part of the bodies new 'getting to know you process'!

 

As Kimberlie said with a lot of us our issues were more psycological than physical and that was my 'bete noir'... took a long time to get over - but one does - and hey - our daffs are shooting up by our pond and spring is coming - i think (?)  - the sun is shining outside my study and life - is good..very good!

 

take care..

 

Graeme

Comment by Cheryl Kerber on February 8, 2011 at 4:26

Glad to hear how far you have come in really such a short period of time --- our bodies are truly amazing as to how they can undergo such a traumatic experience/extensive surgery, and still bounce back.

There isn't a day that goes by that I am not thankful for still being here, getting to see my children grow up.  I have been blessed with 6 extra years  - 7 years if counting when my original dissection took place that I didn't know I had had (you'd think the major chest pressure and slicing traveling pain would have given me a clue but we were on a much anticipated family vacation and well, we tend to push off stuff as nothing especially when we are in our 30's).

Kimberlee is so right on with the mental recovery part --- the physical we tend to be able to set goals for ourselves and we can work towards accomplishing them, but the psychological (the why me? the what if something else goes wrong? the is this pain normal or should I be concerned? and the "I survived, so what am I supposed to be doing?" ---- those kind of mental games can hit out of no where. 

But then I stand here, with my 11 year old daughter who is feeling very emotional about "death"  and pretty much every other issue that a 5th grader experiences, then I accept that that is why I'm still here and if I don't ever get to ski or water ski or skate or whatever else --- I'll accept it as long as I can be here to just give her a hug.

Congrats on being a survivor and nice to meet you.

 

Comment by Kimberlee Jones on February 8, 2011 at 2:44

Another incredible story, as you may guess all of the stories here are. It sounds like you have had an amazing recovering and are doing well. Are you finding like most of us here, that the mental recovery is much harder than the physical(that is where this site will come into play) Some of here are like you, recently had surgery, others like me are what we would call veterans. I'm past my 5yrs post op and working on number six. There are others whose surgery was even longer ago. So please remember we are all here to help and answer any questions that we can based on our own experiences. Though I will say the same thing to you that I do to everyone else, please remember that none of us here are doctors, just fellow survivors and in a way your new family, AD survivor family. Also let your wife and family know they are also welcome to join and ask any questions or voice any concerns they may have.

 

*hugs*

 

Kimberlee

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