Aortic Dissection at 30yo.

[Foxxy74]

Hi All,

Just thought I would share my experience of Ascending Aortic Dissection at 30yo due to a Bicuspid Aortic Valve. I knew nothing at all about this condition, nor the fact that I was a ticking time bomb, until it went off on the way home from work in August 2004. I have posted my story below as I havent really heard of any others my age experiencing an Aortic Dissection (I am sure they are out there). Hope this 'helps'.....anyone.

On the 03/08/04 I was on my way home from work on the train when I got a sharp stabbing pain in the centre of my chest / base of my sternum, which radiated to my jaw / base of my ears. At this point I started to feel very light-headed and thought I might be about to pass out. I got off at my stop and walked the 300/400 meters home where I sat down for 5 minutes to try and collect my thoughts. After deciding that something definitely wasn?t 'right' (a decision I now know actually saved my life) I jumped in my car and drove myself to the local Medical Centre, asked to see the doctor, sat down and patiently waited for my name to be called. The Doctor examined me, asked if I had ever been told I had a heart murmur (which I hadn?t), put me on an ECG machine and called an Ambulance. They then took me to The Royal Brisbane Hospital Emergency Dept arriving about 6pm. The next 12 hours was spent being examined by Doctors, blood tests, x-rays and then the CT scan, which showed the 'Aortic Dissection'.

I was then transported to The Prince Charles Hospital. I was rushed straight into 'Intensive Care' and this is where is all begins to get a bit blurry, although the Doctors have said that they are surprised at how much I actually do remember. They performed an Echo and were able to confirm that I needed Emergency Open Heart Surgery to repair the 'dissection' in the Aorta and replace my Aortic Valve which was 'Bicuspid' and leaking.

I was in surgery by 07.30am on the 04/08/04 for in excess of 6.5 hours where the surgeons replaced the damaged section of my Aorta with a Dacron Graft and my Aortic Valve with an ATS Mechanical Valve. I regained consciousness in Intensive Care on the Thursday morning (05/08/04). I had to have my lungs drained due to Pleural Effusion in which they drained about 900ml of fluid.

I was released from Hospital on the 13/08/2004 but had to return on the 19/08/2004 after the Doctors had some concerns with high temperatures I had had since the Surgery and wanted to conduct more tests to rule out any infection. I was released again on the 23/08/04.

Up until this time I had no idea I was suffering from any form of health issues, let alone aortic disease. I participated in Martial Arts, Gym%%, Scuba Diving and had always lead a full an active life.

I did suffer from a period of depression after it happening all so fast and being totally unexpected. I am feeling alot better these days and life is pretty much back to normal. Unfortunatley, I am going to have to find a few new hobbies as my doctor has advised against most of my previous hobbies.....I am still here.......and that is good enough for me.

Hope me telling my story, help someone else in someway.

Chris.

 

[Ross]

Hello Chris and welcome

I was 33 when mine popped. Things did not go as smoothly for me. I ended up in the hospital for around 45 days on this particular incident. I had had a stroke, pneumonia, and some other hospital infection along with the surgery. I had to relearn how to walk, how to write, etc. Long time in rehab and couldn't wait to get out of the place.

I was having my day off from work, tossing back some brewskis and taking it easy. Along about 10 at night, the pain started and by 130am it became unbearable. I passed out before the paramedics got there and the rest is a blur.

There are a couple of us that survived this. I think were real lucky! I know it's something I never ever want to go through again and I strive on here to stress to people that 5.0 in size is time for action, even though my own never made it to more then 4.7.

Well, there ya have it, you got me going! Welcome aboard and enjoy your stay.

 

[Karlynn]

Chris,
Welcome! You are one of our walking miracles. We have a few here, as Ross mentioned, but not many because not too many people make it through with their lives. My Mom did not.

Thanks so much for sharing your story!

 

[Cris N]

Hi, thanks for sharing your adventure. I am curious though, what activities did you used to do that you say you cannot now?

Cris

 

[geebee]

Chris,

Welcome. I am sure glad you made it to tell your story. Most people do not survive dissections. You seem to have made all the right decisions and I guess it just wasn't your time.

Since your Aorta was repaired and your valve replaced, you should be able to do anything physical you feel able to do. Why do you feel you are restricted? I sure hope it isn't "that warfarin thing again".

I hope things continue to improve for you and you get back to your martial arts and scuba real soon (if you haven't already).

 

[Ross]

Martial Arts, depending on what form, could be one drawback. Scuba should be fine. What else are you into and like Gina said, I hope were not going to hear because your on Coumadin.......So many people are so misinformed on that one!

 

[Creed3]

I was 33!

I was 33!

Chris,
I was 33 when my ascending aortic dissection occurred. I was misdiagnosed and went about six months before I found out what had happened. I went right to Cleveland to have surgery. Those of us who survive this are extremely lucky. I had just had my second child 7 weeks prior to my dissection. The docs think that my pregnancies contributed to and sped up the dissection. I probably would have had the dissection at some point in my life but I would have been much older. All and all I look at my situation as a blessing in disguise. Much better for me to go through this at a younger age.
It sounds as though you are doing great. There may be some things such as the martial arts that you can't continue to do but most of us continue on with much the same lifestyle as before the surgery. We have many here who participate in competitive sports. Now that I think about it the martial arts may not even be out of the question. Ross is right, it depends on the type of martial arts you are doing. You will have some bruises but the main concern is a blow to the head.
I just wanted to let you know that there are some of us 30 somethings out there who have gone through the same thing you have. I even know of someone in their 20's who had an aortic dissection. It does happen.

Take Care!
Gail

 

[geebee]

It's interesting that 3 members all had dissections (and survived) in their thirties. I wonder if most of those that survive are younger? I would be interested in seeing if we have any members who survived dissections after, say, 50 or so. Age may be a factor in survival.

 

[PJmomrunner]

I was told that even after I have my aneurysmal aorta replaced with dacron I will be restricted to 20-30 pounds or pulling/pushing/lifting...forever. Cardio restrictions will be lifted at that time. Is this not the case for those of you who have survived dissections/had aorta's repaired?

 

[Foxxy74]

Hi Guys,

Wow, what a great response. I actually stumbled upon this site by accident, but I am glad I did.

Ok, I probably can go back to martial arts but I am in 2 minds about it. The style I participated in was quite full on, lots of full contact etc etc. My doctor advised that it is probably better not to get any heavy blows to the sternum due to the dacron graft? If anyone has any further info on this, I would appreciate it.

Scuba Diving :- I was told that having a Thoracotomy basically excluded me from being able to dive? (not sure about the fact I had the Plueral Effusion as well). I am going to consult a Dive Dr at the local private hospital, but havent as yet. It would be great if I could dive again, it is a whole new world down there

Also, has anyone else experienced the 'transient blindness / partial blindness'. I experience this on occasion, it can be either eye, but only one at a time, only lasts for a few minutes (3 minutes tops). Starts off being black splotches and then progresses to a grey / black curtain starting from the lower eye, and moving up. Sometimes it wont envelope the total field of vision, other times it will. I have mentioned this to my Cardiologist and GP and they sent me to Opthalmologists and also to have a Caratoid Duplex Scan and all checked out fine. It concerns me that it is still happening so long after surgery, but they have assured me that as long as I keep my INR at the correct level, I will be fine.

Although keeping the Warfarin at the correct level is a balancing act, it is certainly better than my option of being 6 foot under. So I am more than happy to endure the blood tests and take things carefully. It hasnt effected me too much yet.

Great to hear the replys and thanks for you advice and encouragment.

Take care,

Chris.

PS:- Does anyone know of others in Australia who have suffered an Aortic Dissection? It seems all of the web sites etc etc are American and I am flat out find any Aussies who have suffered the same.

 

[Ross]

We have some fellow Aussies here, but none to my knowledge with aneurysms, sorry.

 

[OldManEmu]

Chris I am in Australia however I haven't had an Aortic Dissection. I just had an AVR not however before some severe CHF.

 

[RobThatsMe]

I was told that even after I have my aneurysmal replaced with dacron I will be restricted to 20-30 pounds or pulling/pushing/lifting...forever. Cardio restrictions will be lifted at that time. Is this not the case for those of you who have survived dissections/had aorta's repaired?

Hi PJ,

I had my dissection and emergency surgery when I was 49. 5 1/2 years later I am still around, and very active. My cadiologist recommend that I not lift anything heavier than 50 lbs. My vascular surgeon told me to just lift with-in reason. He said.. " You know when you are doing too much" stop and don't do it. I have lived by this rule and NOT the "Don't lift more than the 50 lb limit", and I still enjoy all the activies I used to do beforre surgery. I just temper some of the intensity of certain activities back alittle. I don't lift weights like I used to for example. But, I do hunt fish, boat, waterski, snowmobile, travel, and enjoy life.

As for Coumadin, it's now become a non-issue for me. My rules is that as long as I keep my INR range between 2 and 4, although trying to maintain a 2.5. to 3.5 range -- I will be fine. Self testing has helped me to keep my levels within this range. I keep all my results on a spreadsheet, sef-adjust my meds, and provide my results to my doctors during my appointments.

I believe the only remaining fear about being on Coumadin is "worrying about what will happen if I am a severe accident, or require surgery". Guess I will deal with that when the time comes. I do carry a medical card on my person, in my car, and provided one to my wife, and work associate. Additionally, I have a Medical ID that I wear. I figure if I need medical assistance, the first thing they do is open your shirt to listen to your heart, and perhaps hook up an EKG, My scar should be enough of a single to let them know I had open heart surgery, and to look in my wallet or see my medical ID.

Hope you have many long happy lifetime experiences ahead..

Rob

 

[Dan W]

Foxxy74, I am 29 and I went through the same exact situation as you. Experienced mine the same and had the same feelings after. I had mine on January 20, 2005. I was at home when I felt a pop in my chest, I stood up, sat down and it went away. I stood up again and flet a bigger pop but this time it was followed by the chest, jaw and lower back pain. They told me the pop was my aorta ripping. I lost vision in my right eye and had terrible lower back pain from bleeding internally. I knew without a doubt that something major was wrong. It was weird, I felt like my body was telling me something major was wrong. I never felt that way before in my life. I went to the Hospital and luckily they took me right in. They did a chest xray and catscan. The results of the xray came back and the doctor said I was fine and that I would probobally be going home. I kept insisting that something was wrong. About 10 minutes later he came back and he looked like he saw a ghost. All he said was that it was serious, I needed surgery immediatley, there was a team on the way to get me and not to move at all. That was all he would tell me. I was later told that if I was sent home, they were 100% sure I would have died on the way home or when I got home.

I got to Union Memorial Hospital where I was greeted by the Surgeon and his team. I was told I had a dissecting aortic anyurism with a biscuspid valve. My aorta was 8.4cm with a 3 cm rip. My parents and my pregnant wife luckily arrived as they were wheeling me into surgery. If they wouldn't have gotten there, I would have not been able to see them before surgery because I had no time to wait. I remember going into the OR, seeing about 15-18 people and being told they were going to give me something to feel better. It was about a 6hr time period from when I got to the first chest pain to when I went into surgery. I woke up 3 days later. Did you have any weird dreams or remember anything from when you were out? I did.

I was very active before the surgery and I also have had to change some of my hobbies. I have sold my atv, am selling one of my motorcycles and I couldn't surf or do too many other activities this past summer. I also had the problem with the depression. At first after the surgery, all I felt was the happiness to be alive. At about 6 months post surgery, it got bad. I felt worthless and I felt like a burden to everyone around me and I was trying to figure out the easiest way to end it all. Those feelings have passed and everything is great. I get bummed sometimes when I think of some of the stuff I once did but it really does beat being dead.

I also had no clue that any of this was wrong with me. I was diagnosed with mitrovalveprolapse several years ago but I was told I would never need surgery and I could live a normal life with no restrictions. After my surgery, I was told that was misdiagnosed and what they really heard was not the prolapse but the bicuspid valve. I could write about this all night. If you have any questions or want to share anything please respond. I check this site pretty regularly since it was a big help to me.

 

[Abbanabba]

....Does anyone know of others in Australia who have suffered an Aortic Dissection? It seems all of the web sites etc etc are American and I am flat out find any Aussies who have suffered the same.

Hi Chris, I also found trying to find Aussie support sites pretty hard. I suffer from a complex congentital heart defect (so I'm afraid my issues are quite different from your own) but I could only find support for parents of children with heart issues...... or support for those with acquired heart disease. I guess we don't fit into either of those! There's a few Aussies here (and the number seems to be increasing) but I don't remember any of them having had an aortic dissection.

Still, I don't suppose nationality makes a big difference to our internal workings, and I'm sure there will be others here who can add their stories to those you've heard already.

Cheers
Anna : )

 

[PJmomrunner]

Thanks, Chris, for starting this powerful thread. It offers a lot of information, much of which is difficult to absorb. Your stories of dissection bring tears to my eyes and cause immediate gooseflesh.

That we have at least five of you who have lived to tell about your experiences is amazing from the standpoint that most people who dissect don't ever get to tell the story. I wonder how many more valvers have survived dissections. Chris, are you surprised at how many had their own dissection stories?

As helpful as this website is in supporting people who face or have been through valve surgery, it is doubly helpful for one living with an aneurysm to know there is also a significant population out there that is living a normal life with a prosthetic ascending aorta...after surviving a dissection, even. I'm certainly not planning a dissection ( ) but I am no longer certain I won't survive one if I do go that route. I would be interested to know how far you all were from the hospital that saved your life. Also, were all of your aortic valves bicuspid?

Thanks, Rob, for the detail on restrictions. Ross and the vast coumadin crew on VR have long since convinced me that coumadin can be managed around just about anything one chooses to do.

 

[Dan W]

PJ, I live about 15 minutes from the first hospital and it was 30 minutes from the hospital where I was operated on. Every time I go to a doctor, they tell me they have no idea how I went that long without it exploding once it tore. They just tell me that someone was looking out for me. I did have a bicuspiud valve but it wasn't diagnosed until the day of my surgery.

 

[RobThatsMe]

Hi PJ,

I was 20 min from the first hospital, spent way too much time there, (my posted story gets into that), and then another 25 min to the next hospital.

Like Dan, they didn't know how I made it. They told my wife that I only had a 3 to 6% chance of surviving the emergency surgery.

Also, I was informed that my aortic valve didn't look normal. I really do need to obtain a copy of my surgery records to find more out about that.

Rob

 

[Foxxy74]

Hi PJ,

After the initial onset of the pain, which I now know was my Aorta Dissecting, there was about 20 minutes before I arrived at the local Medical Centre. Then there was probably another 30 minutes waiting for an Ambulance and being transported to the Hospital. Once there, it was another 11 hours before being transferred to the hostipal where the surgery was performed.

I had no idea that the chance of me surviving the surgery was so low until a few weeks later talking to my friends and family. I have no family living in the same state and a nurse from Royal Brisbane who transported me to the Prince Charles actually returned to the Prince Charles after her shift and sat with me until I was wheeled into surgery. When I woke in ICU the next day, all of my family were there.

I have obtained a copy of my medical file regarding the event and I find it fascinating. My Aorta was approx 5.3 cm at the time of dissection and it extended to the arch. There were concerns post surgery as I did lose alot of blood and they were concerned they may have to go back in, which, thank god, never happened. I continue to research my condition and have even downloaded a book that in quite indepth regarding surgery, and post operative and ongoing management.

I would be interested to know if anyone else has experienced the post operative embolic events that bug me with a total / partial loss of vision in either eye at times. These events last no longer than a few minutes and can be either eye, they can totally black out an eye or just partially. I have also experienced bouts of extreme dizziness at times, but this has only happened a few times and only lasts seconds. My INR has been well controlled and is usually around the 3.1 - 3.4.

Keep the thread going, I think we are all getting alot out of this discussion

Chris.

 

[Lynlw]

lifting

lifting

Justin has different heart issues, but the rule of thumb he was alwasy given , was don't lift any weight whre you have to grunt, that would be too heavy for him, since he was growing, the actually amount of weight didn't matter as much as had to strain or not, So I guess the pounds would be different depending on how large/small or strong you are. Lyn www.caringbridge.org/nj/justinw