Ascending Aortic Aneurism - LIFE BEFORE AND AFTER SURGERY

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It would be great to hear your stories of how you got to the point of TAA surgery, how your experience was with it (and rehab) and how you are now. Did your doctor discuss mortality rates with you?

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  • Posted

    HI Life IS Good 999!

    Having my ravaged aortic valve replaced in 1999 due to a near fatal case of bacterial endocarditis, at 34 years old, was the beginning of my life as a "real" heart patient. Having been born with bav, i know a valve replacement was likely in my future, but more in my 5th or 6th decade. The infection had to be gone before they could operate, so i was in the hospital for 8 weeks on IV antibiotics, and then got my aortic and pulmonic valves replaced with tissue valves. Two years later my aortic prosthesis "blew out". It couldnt handle the high aortic pressures, neither could my ascending aorta. SO I needed another new aortic valve plus a repair for my very dilated aortic root and TAA. i was very symptomatic with chf, chest pain, shortness of breath and huge swollen ankles. Since I was operated on urgently, i really didnt have time to get the low down on risks, etc. I would have to have a mechanical aortic valve and a bental procedure which is the graft repair of the aneurysm. BOTH OF MY OPEN heart surgeries were pretty uneventful, thankfully. I never wanted tobtake coumadin, so that was the worst part of my AVR and TAA repair. MORE LATER... sorry!

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    • Posted

      WOW! Lyntee You have been through a lot! Hearing these stories is so helpful to me and others. You are brave 😃 Thank you for sharing in such great detail.

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  • Posted

    I had open heart surgery for an aneursym in my ascending thoracic aorta 2 years ago. the aneursym was not previously known but was discovered when I had an aortic dissection - aneursym had dissected (torn) and I had to have emergency surgery. the surgeon cut away part of damaged aorta and replace it with Dacron substitute and tied up the valve of the aorta. after I woke up from surgery, I had no chest pain even though they had just cracked my chest and fixed my aorta. they have me walking up and down the hospital corridors everyday within a few days.

    a month or two after being released from the hospital, they finally started me in cardiac rehab where they had me doing light weights and about 25 minutes of mild aerobic exercise. they checked my blood pressure numerous times during each session to make sure I wasn't overdoing it.

    my surgeon gave me a list of limitations exercise that I should follow - mostly because of the aortic dissection. my surgeon never discussed mortality with me.

    2 years later I've had numerous CT scans to verify that my aorta repair is holding together and that my dissection is stable. I walk a lot but am forbidden from lifting heavy weights, running, weight lifting at the gym, and even sprinting to catch a bus. i have been told not to mow the lawn unless I use a mower with power driven wheels.

    I'm taking beta blocker and two blood pressure medicines which keep my blood pressure down around 105 / 65 or slightly less and are supposed to help prevent a reccurrance of the problem.

    I have taken some genetic tests to see if I have any identifiable genetic diseases that could have caused my aneurysm and dissection. the tests came back negative.

    before surgery I was working a 9-5 sort of office job and thinking about retirement the next couple years. - after I recovered from my surgery I told my boss I wouldn't be back - that I was retiring. I wasn't sure how long I had to live undecided that working was not one of my priorities for however much life I had left.

    I used to walk several miles a day or 2 half an hour of fast walking on the treadmill at the gym, I used to lift heavy weights hard at the gym regularly, and I would often run up flights of stairs

    2 years after my surgery, I walk about a mile a couple times a week for exercise, I travel, I've flown overseas several times for two week vacations where we do a lot of walking. so far, so good. no more gym, though, no more fast walking, no more running up stairs. when I fly I have my spouse lift my carry on bag up into the overhead bin for me. I really miss lifting weights at the gym but I much prefer living to lifting weights. we were in Rome two years ago and walked 6+ miles from the edge or the old city down the Appian Way and out to a sight we wanted to see. that way before surgery. walking that kind of distance is out of the question now.

    if you had a straightforward surgery to repair your ascending thoracic aorta I think your life expectancy is probably as good as anyone else's, especially if you're on beta blockers and/or blood pressure meds.

    for myself, I don't know what sort of life expectancy I have and try to keep that in mind every day.

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  • Posted

    I had surgery for a dissected aortic aneurysm six months ago (August 2018). I was sitting in bed reading when I had a severe sharp pain in the middle of my chest. I was airlifted to a hospital in St Louis Missouri and had surgery where they replaced the ascending aorta and aortic valve. I also had a right coronary artery bypass since the dissection caused a heart attack. I was on a ventilator for several days and don't remember this time. I was fortunate and did not have any chest pain following the surgery. I did develope pneumonia and was in the hospital for 1 month. After returning home I began cardiac rehab two months postop. I have done well during the recovery period and gotten most of my stamina back. I am 64 yr old and retired so I have been fortunate that I do not have to worry about returning back to work. I am interested in timothy 406's response that he was advised to avoid long distance walking, running or lifting weights. I was not told this and wonder if I should check into this. I currently walk at an incline on a treadmill 30 min a day, use an elliptical and lift 5 lb weights.

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  • Posted

    I had apparently had moderately high blood pressure for a few years that had been written off as white coat syndrome when I saw the doctor. I had recently sold my business of 25 years and I was painting my house, readying it for sale so we could retire to a small town in another state. I was up on a ladder and noticed that I felt strange. I stepped down and realized my heart was beating rapidly. I sat down, took deep breaths, took a shower and it continued so we went to the ER. Unfortunately, the ER nurse told me to bear down before doing an EKG, and it immediately ceased. Without any reading to see what had been occurring, I was admitted for testing. The next day I had an echo and I was told nothing was wrong and I could go home. Fifteen minutes later, the cardiologist returned and said that I wouldn't be going home after all because my aorta was enlarged. The next day, I had a CT scan and the aneurysm was diagnosed at 5.2cm. I immediately began researching, even while still in the hospital. I read that women are now operated upon at 5.0cm. I learned that the hospital where my sister works, one hour away, had better survival rates than the one I was in. The cardiologist came in to tell me he wanted to see me again in 4 months. I did make an appointment, but I also got a second opinion at my sister's hospital. That doctor wanted me to return in 3 months, but I had already read enough about my risks (40% risk of rupture over 5.0cm) and I was not happy with waiting, especially with driving 450 miles back and forth many times moving our possessions to our new town. (My husband doesn't believe in moving vans!). Crossing the desert on lonely highways, and thinking about how I would certainly die if I needed helicopter transport, I made the decision to book my surgery ASAP and my surgeon reluctantly agreed. I woke up with very little pain and I was sitting up in a chair at 5 am the following morning, and walking the next day. I had my surgery on Monday and went home on Friday. Breathlessness was my main symptom and I was under strict instructions to walk three times daily, and have high protein hearty meals. I started cardiac rehab after 6 weeks and I did fine on a treadmill, elliptical, etc. I have no limitations now, at 16 months out. However, we are stuck in a small rental house currently, waiting for the home we are having built to be completed. My exercise equipment is in storage and a decent gym is 30 minutes away, so I am not in good condition right now. I need to get going and build up my strength. We moved from sea level to 5100 feet altitude, so I do get out of breath easily. I'm so grateful to be alive! I do take Atorvastatin (my good cholesterol is low), Atenolol and Lisinopril, which I am sure I will be able to discontinue once I lose weight and get into good condition.

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  • Posted

    I have a question for anyone wanting to share their information. Following my aortic dissection and surgical repair my cardiologist put me on Atorvastatin 80 mg once daily. I had a heart attack as a result of the dissection but did not have high cholesterol before or now. I questioned the high dosage and was told this was protocol. Has anyone else been prescribed this amount? I have been tolerating it well so have continued to take. Thanks.

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