Aortic dissection & aortic aneurysm information support group

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

Where to start... I had no warning or symptoms, and was swimming 2-3 miles a day up until my acute Type A dissection on November 5, 2012.  My sister and I were visiting our terminally ill mother in Chicago and were packing to fly home (she to Idaho, I to Philadelphia) when I felt a ripping sensation in my chest.  I had time to call out to her to "call 911," which she did, thank God (I'm glad we were on good terms!!!).  I remember thinking I should sit down, then lie down, and the next few things I remember are spotty.  The EMS techs kept telling me I was having a stroke, and I remember being very angry because I knew that wasn't the problem, and trying to tell them so.

The Emergency Room personnel were a little more astute, and after a Chest x-ray and CT, they figured out the problem and called in the heart team.  I was very fortunate that the cardiac surgeon on call was a specialist in aortic disease.  I had dissected from root to bifurcation, also affecting the left carotid, right iliac and both mesenteric arteries.  Also ripped the aortic valve.  Apparently, there had been an undiagnosed aneurysm of approx. 9cm in my ascending aorta.  Surgery lasted 9 hours, 21 units of blood, replacing the valve and repairing part of the dissection with a graft.  Several complications followed, including ischemic colitis, which nearly led to a temporary colostomy, but I was spared that, thank goodness.  I was in the hospital about 2 weeks, at which time my son, who had flown in from New York, rented a car and drove me 12 hours home to Philadelphia.

Then things got dicey again.  It was difficult to find a cardiologist who wanted to take me on, and I was still in what seemed to be more than the usual amount of pain.  A couple of weeks later, they decided to do a CT scan, and diagnosed sternal dehiscence.  So on January 4, 2013 it was back to the OR for sternal reconstruction.  Wires and plates and screws (oh my).

Even after all this, I really thought I would "get better" and then just maintain.  Once I was told I could start exercising I was back in the pool and back up to swimming three miles a day by July, 2013.  I was also back at pilates class twice a week. Then it was time for my 6 month CT scan.  I was shocked and devastated to be told that I am now developing an aneurysm in my descending aorta, below the repair.  It has grown .5 cm in 6 mos.  Now I'm not allowed any exercise except "light cardio" (e.g., walking).  But of course the worst thing I can do is gain weight!  So.  I've started consulting a dietician who is really very helpful in managing my food consumption, but this is really HARD.  I'm struggling, but working at maintaining a positive attitude. 

I'm so glad I found you all!!!  I didn't think I would find anyone who really "gets it," but as I read your stories I feel so much less alone.  Thanks for being here!!!

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Comment by pam elis on October 30, 2013 at 0:56
Hello judy, I have a descending aneurysm, that has been doing some strange this..I may be going to the Cleveland clinic as well....I believe in god, I believe he's a healer and I believe we have all met for a reason...We've all been through a lot, and still here to talk about it. I wish you well and let me know how the Cleveland clinic goes and if I go first ill do the same...ill keep you in my prayers!!!
Comment by Marcela Nunez on October 22, 2013 at 5:21

Hi Judy. I have a passion for swimming too. As of today I am swimming a mile 4 times a week. To be honest, I am always afraid that I'll get another aneurysm or have to go thru surgery again. I try to live my life as normal as possible. It is hard, but thank God we found this site that helps us go thru this and most important..we are not alone. You'll be in my prayers. Blessings

Comment by Nicola McMeekin on October 14, 2013 at 10:31

Hi Judy, welcome to our group.  You have certainly been through a lot, and it must be very frustrating after getting back to swimming again to have such a set back after you were recovering so well.  

I am thinking of you,

Nicola

Comment by Judy Johnson Roth on October 4, 2013 at 12:28

Thanks for your prayers and kind words, Pam.

Comment by pam elis on October 4, 2013 at 10:34
Wow! God bless you! I thought I was going through a lot! Ill be praying for you.
Comment by Kimberlee Jones on September 23, 2013 at 11:27

This even changes you, it changes us all.  I was wondering if they did any genetic testing or what did they say  was the cause of your dissection? Time to focus on what you can do and not what you can't.  I know it's hard, but it does get easier.

*hugs* I'm just happy you're here.

Kimberlee

Comment by John Greenstreet on September 22, 2013 at 20:27

Hallo Judy,

Thanks for your email.

You think I'm an inspiration! Welcome to the site, and welcome to a new life! I hope you can now put your AD behind you, although you never forget.

Yes, I got the job, and on Wednesday I start with my first tour. My first trip is 6 days in Germany on the Rhine, and then after a short break I have almost two weeks exploring the highlands and islands of Scotland!

It's a dream job but quite demanding. The only thing that worries me is my stamina and strength are not as they were, and although I declared "Type A aortic dissection with new artificial aortic valve" on my application under 'Medical conditions we should know about', as I guessed someone didn't want to admit they knew nothing about AD and so ignored it. At the interview I was prepared for awkward questions but none came. So I guess I will be economic with the information I give them! I also have a hip replacement which is often painful, so can blame my slow limping gait on that!

I have to start on the local short haul trips before they let me loose on the USA, but I do travel over to see my daughter in Toronto from time to time. Why not visit the 'old country' over here? You'll love it!

Stay well and positive,

John xx

Comment by John Greenstreet on September 22, 2013 at 20:21

Welcome to the site, Judy, and welcome to our rare group of survivors!

Comment by Patrick Gethin on September 20, 2013 at 22:03
Welcome to the site. We all have a story to tell. I am more fortunate in that after my 9hour surgery I had no complications. But if you read my blog you will see there was more to come from other health problems. It must be difficult to watch your weight after doing so much swimming. I was swimming but not as much as you and when I stopped due to moving house and not getting easy access to a pool I have found the my weight has increased. There are a lot of people here who can empathise with you.

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