Mended Hearts Open Forum

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  • 1.  Aortic aneurysm

    Posted 12-20-2021 12:08
    Hi all my first time posting, I had a heart attack type event last February and during my stay I was  also diagnosed with an aortic root aneurysm that measured 4.9 on an echo. Here we are 10 months later after numerous echo's, ct's and mri's I am now at 5.1 and with a genetic test that came back with a form of Marfans syndrome my cardiologist has refered me a heart surgeon here in Portland, Maine. I would anyone's input on specific questions I should be asking the heart surgeon on this initial consult, TY in advance, Dave

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    David Adell
    Raymond ME
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  • 2.  RE: Aortic aneurysm

    Posted 01-25-2022 17:01
    Hi David,
    My name is Shannon about 6 years ago I was told I may look like I have Marfan's Syndrome and at the time I was in the ER for not being able to walk or breath as I was diagnosed with having DVT, and Bilateral pulmonary Embolisms. That is when they noticed my heart condition I never knew I was born with I have a Bicuspid aortic Valve and a ascending aortic aneurysm, currently at 4.6 CM. I have had several CT Scans and MRI and Echocardiograms to monitor my heart now. I have a genetic condition called Digeorge Syndrom which is why I have this heart condition. It also affects me in a lot of other ways. I'm 42 and have struggled a lot the last 7 years. I thought I would share my story and maybe we can ask each other some questions in regards to our doctors and what to ask to  help each other out.

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    Shannon L
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  • 3.  RE: Aortic aneurysm

    Posted 01-26-2022 06:36
    Good morning Shannon, I have had breathing issues under excertionfor many decades. I'm 63 now and am just founding from mymother who is 87 that when I was born that the doctor told her and my Dad that I will have heart problems and now it is being disclosed and not a thing was checked because I didn't know. I have had gentic testing done and it is an unidentified variant of Marfan's . I have an aortic root and thoriac  aneursym . THe aortic root is now 5.1 cm and the size makesit very difficult for the aortic valve to work properly and causes a modereate to severve level of reguritation. I have had to use more than one cardiologist and heart surgeon to get this far. Iamscheduled for an an aortic root  and valve replacement in 48 hours.The valve itselfand surrounding tissue are not healthyenough for repair therefore it will be replaced. Please ask away if I can be of service I will, bear in mind that my response may be delayed getting readyto go intosurgery and after butI will reply. Wishing you the best and hopefully I was of some assistance. Sincerely, Dave

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    David Adell
    Raymond ME
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  • 4.  RE: Aortic aneurysm

    Posted 01-26-2022 12:51
    Please take care and I will pray for you and your strength in your surgery. Are you apart of support groups on Facebook? They are also great way to get support and talk to others as well. I will be here if you would like to talk or share your experience from surgery. May I ask what has been causing the Breathing issues is this related to heart? Are you very tall with having Marfan syndrome? Don't worry respond when you can as I do understand your getting ready for surgey.

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    Shannon L
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  • 5.  RE: Aortic aneurysm

    Posted 01-28-2022 06:42
    Good morning shannon,I found out  yesterday mysurgery is postponed until 2/2/22no realexplanation, frustrating yet outta my control.No i am not part of any supportgroups on facebook. I actually have a group of people who have been thruogh similar procedures which I can talk to directly of their personal experiences.My breathing issues are from the poor performance of the aortic valve especially when the surround area is distorted from the aneurysm.My height is above average,my arms and legsare not proportional and I was born with webbed fingers and toes and had surgery on my left hand as a baby as I was born with 2 fingers together. I thought  a response now would help from the frustration and,anxiety and depression of waiting a little bit longer!

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    David Adell
    Raymond ME
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  • 6.  RE: Aortic aneurysm

    Posted 01-28-2022 21:58
    I can only imagine how difficult that would be to have a set date and it gets changed on you and all the emotions that follow after that. Did you have the breathing issues as a kid as well? Do you know about when it really started to affect you and at what age? I noticed that I walked up a hill now I get more out of breath a lot easier now. I'm 42 years old and my aneurysm is 4.6 cm with the BAV. I have two of my toes that are slightly webbed myself. I suffer a lot not days with osteoarthritis through out my whole body. I have had spine surgery where they replaced disc in my spine as they deteriorated at age 32 did have surgery until years later. I have some nerve damage from before surgery that never got better in my right hand. Its challenging to have my dominate hand not work like normal. I do see a lot of specialist to monitor all my health problems. But I keep my spirits up and take each day being thankful. The one hardest thing for me is my heart issues. I do wish I knew people in person who  I could get to know and learn from them and share stories to each other as well. Glad to hear you have that in person people support.

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    Shannon L
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  • 7.  RE: Aortic aneurysm

    Posted 01-29-2022 21:13
    It was rteset the day before and emotionally Im stillprocessing it.As I reflect back on my childhood it was only under duress that I ran out of breath even running cross country and track.Hindsight is truly 20/20! High school on, I'm 63 now and it has gotten progressively worse over the last 3 years carrying bags of groceries in and climbing stairs ascending small inclines and hills.I have ra and have had for years and also degenerative joint disease and Raynauds phenomenom since a teenager. I have worked as a heavy truck technician since 1985 and not sure if that work will be inmy future after,although I am hopeful for a few more years. Every day I wake up I realize my work here on thisplanet is not done, not sure who is charge of that but I know it's not me! Wishing you well through you journey you are in my thoughts and prayers.

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    David Adell
    Raymond ME
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  • 8.  RE: Aortic aneurysm

    Posted 01-30-2022 16:39
    Thank you for sharing in your email. I hope all goes well when you do have your surgery and prayers for fast healing. I get my heart tested once a year to check my valve and my aneurysm. Each year I do get more nervous about my heart check up as this is scary for me. I do understand the degenerative joint disease as I suffer from that as well. Going through spine surgery was a bit tough on me. Now dealing with so much joint pain its difficult for me to lift or do much of anything. Take care and I hope after surgery your breathing becomes much better. Keep in touch and take care.

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    Shannon L
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