Mended Hearts Open Forum

Expand all | Collapse all

AAA aortic dissection

  • 1.  AAA aortic dissection

    Posted 08-02-2021 12:52
    Hello everyone,

    I'm new here and I haven't quite figured out how to navigate the site yet. I'm actually looking for any group that can talk to me about aortic dissection.  I'm a 46 year old man and back in 2015 had a AAA aortic aneurysm resulting in immediate surgery. Luckily I survived by the grace of God.

    I just want to talk to people because since my surgery things in my life has changed. My strength isn't the same. Im tired all the time and I am on a load of medications that are responsiblefor the tiredness but the weakness I dont know. is there anything else I will experiencefrom this surgery. I have already had a blood clot issue that nearly took my life a month and a half ago that is now leading to me lose my right big toe because the residual clot got lodged in my toe vessel.

    I'm just wondering if I can expect my quality of life to get worse. I guess I'm worried about what I can expect.  it's already interfering on my work life and I don't know what to do.


    ------------------------------
    John Bittner
    Cicero NY
    ------------------------------


  • 2.  RE: AAA aortic dissection

    Posted 08-06-2021 17:46

    Hi John,
    I'm relatively new here too. I just wanted to say what you're going through sounds tough! And I empathize with you. I don't have any experience going through a dissection, but I do have a thoracic aortic aneurysm ascending (in the watchful waiting stage),  and my mom had a dissection on her descending TAA. She wassn't able to have a surgery even though it was an emergency because she was on blood thinners for something else. She was treated with meds in ICU / got her blood pressure down and she's doing okay12 years later. She only had one setback which was ischemic colitis which he believed was caused by Aortic insufficiency. 

    Praying for you to experience peace and health going forward ! 

    Bessings,
    Debi Ries 



    ------------------------------
    Debi Ries
    San Diego, Ca
    AVR / Open Surgery 2011/ TAAA 4.2 cm / Afib
    ------------------------------



  • 3.  RE: AAA aortic dissection

    Posted 08-07-2021 11:27
    Hello John Bittner
    Am celebrating 3 years Post Op this week, was going to do some
    bragging and complaining and then read your note to the Forum
    and had to reply to you...
    It is difficult to say what is normal for the post surgical complications
    you mention, I don't know what you had going on when you went in
    to have the surgery, and what the surgeon has told you and if your
    post surgical cardiologist is also aware of what you are going through

    I was 65 when I had my OHS 3 years ago this week.  I was in decent shape
    for an older woman, I do not drink, had given up the smoking and lost
    20 pounds before the surgery.  I love potato chips, its my only vice, 
    but now I buy the nearly 0 sodium ones.

    There are days I was dragging through, could not make a day without a nap,
    but I think I was dealing with depression or intense sadness instead of anything
    medical.  I joined an online counseling group, and am a happy and busy once
    again.  I paint every day and do Meditation and am thinking of taking up
    drums or guitar.

    All of our Heart Recovery takes time.  Time is different for everyone, some
    people go through it really fast, get on a program, learn new hobbies and put
    the Past to Sleep and come out on the other side of the Surgery.  I do hope that
    for you John.  Good Luck and Be Well Soon

    Mary H





  • 4.  RE: AAA aortic dissection

    Posted 08-07-2021 12:06
    Hi Mary. Thank you for the reply. To answer your question about my lifestyle. I WAS a smoker in fairly good shape, worked 60 hrs a week. I dont drink or do drugs. I am a homebody but turn wood in my spare time and I still do that.

    But, I feel physically weaker now, I can't lift what I use too and I've tried. Activities wear me out faster then they use too and I'm constantly tired. Sometimes I feel like my Grandfather, falling asleep in my chair when I sit to watch a movie. The Dr tested me for sleep apnea and I dont have that.

    They just CT scan me yearly and give me an EKG everytime I visit the Dr. No strange abnormalities have been revealed. So idk. I just know my employers aren't happy with my performance at all. I'm just trying to save my job its the only way I know how to make a living. This is the worst time for me right now, emoyment wise. Luckily I am working for now.

    I work in the Asbestos removal field. A totaly safe job.

    ------------------------------
    John Bittner
    Cicero NY
    ------------------------------



  • 5.  RE: AAA aortic dissection

    Posted 08-07-2021 12:56
    Oh yes John....I had a boyfriend in the Asbestos Removal Field too...

    I would imagine that if they are giving you a updated EKG check every year, that
    blood tests also are given ....I know this is only  a support Forum, but have
    you had a CBC including thyroid levels and markers for possibly high inflammation
    levels or Chronic Fatigue Syndrome that might be throwing you off.  

    My mind was different after my OHS John.  The surgery brought home to me that
    my days are numbered.  No matter how long those days are, I had never looked into
    the abyss and realized that I would not be here forever.  As a child and a person
    who never had a life saving surgery before, if it doesn't change you, then you are
    not looking at what might be making you so tired.  My father always told me that
    when you fight the sadness so hard because you don't want to feel or deal with 
    it, it darn well will make you tired.  

    I am sorry John, I am not implying anything, just letting you know that I am
    pulling for you and you get to the root of the tired problems soon

    Mary H







  • 6.  RE: AAA aortic dissection

    Posted 13 days ago
    yes John I would say the med's are taking away your energy that will do that and they are doing it to me. But you need to try to get out and walk more and get active as well. I had to my feet were feeling like pins and needles stabbing me. And my scar on my stomach giving me pain as well. I'm doing sit ups for my stomach and longer walks. And the sexual side affects as well dose it ever stop I think once in a while. I'm taking it day by day.

    ------------------------------
    jon klingler
    Roseberg OR
    ------------------------------



  • 7.  RE: AAA aortic dissection

    Posted 10 days ago
    Dear Jon and John
    I am so sorry for your health issues. It is sp frustrating!!
    My suggestion:
    call/ see the doctor : find out if your heart condition is causing your symptoms , your medicine might need changing , or see your internist in case you are having ( i hope not) another condition .

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




  • 8.  RE: AAA aortic dissection

    Posted 08-07-2021 17:51

    Hi, John
    i just had another thought about you feeling so tired all the time. Have you looked into the meds you're taking? So many of them cause fatigue… just a thought 



    ------------------------------
    Debi Ries
    San Diego, Ca
    AVR / Open Surgery 2011/ TAAA 4.2 cm / Afib
    ------------------------------



  • 9.  RE: AAA aortic dissection

    Posted 08-07-2021 17:58

    John,

    Oops, I'm embarrassed that you already said you know it's the meds you take that make you tired…only other thought is about your aortic valve. Is it functioning at full capacity? 



    ------------------------------
    Debi Ries
    San Diego, Ca
    AVR / Open Surgery 2011/ TAAA 4.2 cm / Afib
    ------------------------------



  • 10.  RE: AAA aortic dissection

    Posted 21 days ago
    Apologies, but I don't see any way to post a new message, without replying to an old one.  I'm new and confused.  :-)

    I am now six months out from a AAA with (what I'm told is) a massive dissection.  I was in extremely good shape when the emergency occurred, luckily, and my recovery has been relatively uneventful.  One by one, I've dropped medications, and I now take only metoprolol for blood pressure regulation.  No more arrhythmia medication, no more lasix, no more warfarin, etc.  I had a miserable side effect (neurotoxicity, tremors and an irregular gait) on the arrhythmia med (amiodarone), but am slowly returning to normal.  I'm 72 and now have a mechanical aortic valve from Edwards LifeSciences.

    I've adapted to an extremely low sodium diet and returned to running (intervals in my daily walks) and weight training with light weights.  But I was a competitive track and field athlete before the emergency, and I'd love to do more.  My question is.....    are there any experimental procedures for CORRECTING the dissection?  When I ask my cardiologist if a dissection heals, his answer has been "not really, no".  And he advises me not to run or lift heavier weights.  So.....    is anyone aware of a route to go even further, to actually repair the dissection?  Thanks, in advance, for any pointers.  Rick


    ------------------------------
    Rick H.
    CA
    ------------------------------



  • 11.  RE: AAA aortic dissection

    Posted 10 days ago
    Rick,

    I do not think you get it. You should be "DEAD!".

    I have have had an aortic dissection and thankful I am alive. Is there a procedure to correct a aortic dissection...yes there is another aortic dissection. I have 4 open heart surgeries. I listen to my doctor. If you are taking yourself off your own medications? Then I wish you " good luck"! You are going to need it.

    RIP!

    ------------------------------
    Michael Hinderlie
    Port Charlotte FL
    (941) 421-0482
    ------------------------------



  • 12.  RE: AAA aortic dissection

    Posted 9 days ago
    I have NOT stopped taking medications without the approval of my cardiologist.  And thanks for the rude "RIP" greeting, but I'll continue to seek out experimental procedures (clinical trials).

    I "shouldn't" be dead.  Yes, I benefited from great teams in emergency medicine and cardiovascular surgery, and give plenty of thanks on a daily basis.  But I was in great shape heading into the dissection, and I'm in great shape recovering from it.  Enjoy your life, and please don't respond to my messages in the future.  Thanks!

    ------------------------------
    Rick H.
    CA
    ------------------------------



  • 13.  RE: AAA aortic dissection

    Posted 9 days ago
    Hi Rick, congratulations on reducing your meds. I have been able to do that as well. I'm not sure about optional treatment, but I read about a surgical procedure for heart surgery by entering in the under arm area which makes for recovery much quicker and easier. It sounds like you're on the right track as far as taking care of yourself. There are many people who were in excellent health before we became aware of our heart condition. Heart disease doesn't care about that lol. I hope you just keep following your doctors advice and everything else you can to keep on being healthy. You have a long prosperous life yet to be lived. God Bless your journey.

    ------------------------------
    [Carrie] [Kashani]
    Parapro
    ISD
    [White Bear Lake [MN]
    Carrie
    ------------------------------



  • 14.  RE: AAA aortic dissection

    Posted 8 days ago
    Thank you, Carrie!  I have a two year old grandson, and am working hard to stick around.  Best!  Rick

    ------------------------------
    Rick H.
    CA
    ------------------------------



  • 15.  RE: AAA aortic dissection

    Posted 9 days ago
    Rick,

    I never had an aortic dissection, but I have driven my body to its physical limits athletically in the past before nearly dying 4 years ago, and I 100% agree with Michael re medication management.  Anything you do medically should be authorized by your cardiologist!  If you think that more is possible than what your cardiologist is now telling you, then find another cardiologist, preferably with a subspecialty in sports medicine. Do not be your own doctor if that is in fact what you have been doing.

    Good luck,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 16.  RE: AAA aortic dissection

    Posted 8 days ago
    Thank you Ira. I have a strong medical background, particularly with regard to blood cells and vascular endothelium.  My cardiologist and I have made decisions TOGETHER, I have great respect for him, and, again, each elimination of a medication has gotten his (preemptive) stamp of approval. Good luck back at you!  Rick

    ------------------------------
    Rick H.
    CA
    ------------------------------



  • 17.  RE: AAA aortic dissection

    Posted 7 days ago
    Good to hear that, Rick.  Although I'm not a doctor, I tend to read and understand the various scholarly  medical studies I read about the medical including heart conditions that affect me.  I always talk to my doctors about what I read before engaging in a new course of action, though, because I realize I don't have their broader context or experience.  It Sounds like you do something similar.

    Best,

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 18.  RE: AAA aortic dissection

    Posted 13 hours ago
    Got results from my first CT scan, post hospitalization.  Note from my surgeon....   "Stable repair; no evidence of pseudoaneurysm formation; arch not dilated. Repeat CT in 1 year."

    :-)

    However, I got a full report of the damage for the first time.  Massive dissection, including a continuation in right renal artery.  It's more of an issue of what didn't dissect, rather than what did.


    ------------------------------
    Rick H.
    CA
    ------------------------------