Mended Hearts Open Forum

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  • 1.  Pulmonary Artery Anuerysm

    Posted 01-26-2019 10:24
    Hi All,

    This is my first Post and my first time reaching out re my issue. I have been diagnosed with a very rare condition, caused by a pulmonary stenosis and pulmonary valve regurgitation. The Mayo Clinic has been tracking me since this was discovered via a chest X-ray for a physical.

    I am 61, female, in great health (well the rest of me is) no high blood pressure, don't t smoke, etc. I have been told this is found in .003% of the population, and generally post mortem since there are no symptoms. Aortic aneurysms are found in about 7% of the population, per my cardiologist. 

    So I am now looking at open heart surgery repair and wondering if anyone here has had a similar repair? I am also looking for the "community" that discusses open heart surgery for support.

    Thanks to all of you for being here - 


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    Austin Dunham Weidner
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  • 2.  RE: Pulmonary Artery Anuerysm

    Posted 01-29-2019 12:18
    ​Hi Austin,

    Welcome -- while my situation was slightly different than yours, I can relate to having open heart surgery.  I was born with a bicuspid aortic valve (2 flaps instead of 3) and I had my valve replaced through an open heart surgery procedure in 2016.  While my surgeon was replacing my valve, an enlarged aorta was discovered and so "my bonus" in my surgery was a reduction in the size of my aorta - it is apparently common for vessels to enlarge or for aneurysms to form when you have a valve issue.  I am very grateful that mine was discovered and thankful it was repaired while I was already in surgery. 

    Open heart surgery is a daunting prospect for most of us -- and it is common to feel unsure, frightened, anxious, even depressed.  I remember the roller coaster of emotion preparing for my "surgery day".  I scheduled it right away because I knew if I didn't, I would put it off -- I mean is there ever a good time to have OHS?  But, I look back now and recognize that I am here today because of this life saving surgery. There is a reason you have been made aware of your condition and while it is a rare condition, imagine if it had not been found? 

    I am glad you reached out as Mended Hearts is a place where heart patients support other heart patients.  And while we are not medically trained, we have the unique experience of knowing what it is like to have a major heart event.  I know what it is like to be in a hospital bed with tubes everywhere clutching a heart pillow-- and I know what it is like to be apprehensive about my health and my future.  If I can help in anyway, please do not hesitate to let me know. 

    Blessings,

    Lea Parker
    Mended Hearts Chapter 362
    Accredited Visitor


  • 3.  RE: Pulmonary Artery Anuerysm

    Posted 01-30-2019 16:51
    I read Lea Parker's reply to Austin.  Her surgery and recovery seemed so easy but I know it wasn't a piece of cake.  As an accredited visitor, I hear the stories of patients who have procedures ranging from heart caths to multiple by-passes, repaired valves, repaired aortic dissections, etc.  Each person is concerned with recovery, anxious if surgery is pending, and worried about life after surgery.  I am fortunate to have a visiting partner who has had by-pass surgery complicated with CHF and a blood clot that nearly took his leg so he now must walk with a cane and take breaks between patients.  He is a joy to work with because he has a sense of humor, a feeling of gratitude for the care and concern of his wife and daughter, and filled with the joy of living.  I am proud to visit with him.  It is one of the benefits of being an accredited visitor share heart histories and stories and realizing life is a rich experience.

    George Hess
    Accredited Visitor
    Chapter 81

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    George Hess
    Accredited Visitor
    Chapter 81
    (404) 452-8464
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  • 4.  RE: Pulmonary Artery Anuerysm

    Posted 02-03-2019 19:56
    Hello Austin,
    I have not had the type of procedure you are talking about. I do know that you are looking in the right spot for support and assistance. Please keep looking at this site as not everybody logs in every day. You do want to google Mended hearts in your area and look for a chapter near you. It will be of assistance knowing you have people around you who only want you to get better.
    Also be aware that you may be the first in a chapter with that type of condition. That can lead to either a depressing lonely feeling or a feeling of being there to help educate others. I highly suggest the latter. It will help you with your healing process and it will also help those around you. 
    Members of the family often feel left out and fearful because they may not know what is going on, or have no one to ask questions. That is where a Mended Hearts chapter and or cardiac rehab program can help everyone recover faster from these conditions.
    Do not give up on reaching out and let your family know they can also use this site to seek help as well. We are all here to assist each other. You already have the right attitude about your situation, seeking assistance shows that. Keep us all informed of your progress and God bless.

    Richard Short 
    Chapter 395