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Two weeks since myectomy

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progers Find out more about progers
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  • Perri Carol
    replied
    Hey Paul!

    Hi Paul, How are you feeling today? Everyday you will feel better and better.

    You asked why I had two myomectomies. I had the first ten years ago and was great for 9 years or so. However, I have IHSS and for some bizarre reason, the subaortic membrane/muscle grew back. My docs said it was very unusual. My septal wall was also thickening, but in and of itself did not require surgery. However, this subaortic obstruction ruined my aortic valve. I guess since they were in there to replace the aortic valve, they "fileted" (sp?) me, as well. I don't think this is common, so don't worry about it happening to you.

    Please work at keeping your spirits up and exercising. Please let us know of your progress.

    Perri

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  • progers
    replied
    Hi Eve,

    I have also run into goof ball cardiologists who know little about HOCM. Its actually scary how ill informed some of them are. But I would trust Dr Lever's judgement, as I believe he is well respected as a HOCM specialist. Your septal wall is also huge - just like mine was (mine was 29 cm). I don't know what it is now as I haven't discussed the details with my surgeon. You should benefit from having it reduced as it would open your outflow tract and relieve the SAM. I hope that is what has happened with me.......But this last day or so I think I have noticed some SOB - particularly last night. I can't tell if it is in my head or is still there after the surgery. It is quite scary to think I may still have SOB as this is the main reason I went ahead with the surgery.

    The good news is that my energy has really improved over the last day or so. Maybe I've turned that corner??? Plus, the depression has eased!

    Please keep us informed of your decision regarding the myectomy. Make sure you write up a list of questions to ask Dr Lever when you see him so your concerns can be addressed.

    Bye for now and take care.

    Paul

    Leave a comment:


  • Eileen2345
    replied
    Hi Paul,

    Eve, what have the experts said about the outcome of a myectomy for you? I know that there are some ways of being able to tell if you will be helped. I know you have concentric HCM, but it sounds like you must also be obstructed or else they would not be doing the myectomy, right? my surgeon seemed convinced that my symptoms were largely being caused by the obstruction, which was related to a severe case of SAM. Thus, he believed that I was a good candidate for surgery.
    I have not yet spoken with a HCM specialist. I have only seen the goof ball cardios here in Phoenix Arizona whom know little to nothing about HCM.

    It is because of this website that I knew to call Cleveland on my own. Dr. Lever has seen my echo films and has scheduled a tentative myectomy surgery date for May 3.

    Yes, I have obstruction. I will not know the full extent of my heart's conditon until I see Dr. Lever on April 27. I do know that I have SAM and that my septal wall is around 27 mm and my atrial measurement is 4.5 cm and my resting gradient is 107 mmHg.

    How are you feeling today? I hope much, much better.

    Surgery depresses me. Two years ago (like I mentioned earlier) I had a hysterectomy, a Radio Frequency Ablation and an ICD implant done in one week in the hospital and I was depressed for a while afterwards. And it took a good 3 months for me to feel back to myself again both physically and emotionally.

    During that stay in the hospital, they had to give me blood transfusions before I could have the hysterectomy done.... and to me, that was a weird feeling, to have someone else's blood mixed in with my own. It was a bit freaky, but it saved my life and I am very, very thankful and grateful. I just did not expect it, it caught me off guard.

    I am not looking forward to having this surgery done, (no one wants open heart, and if someone does, they should talk to a mental health counselor right away) .... but I hope it helps me to live longer with a better quality of life.

    When/If I have a myectomy done, I will not push myself too hard, I will do what I need to and not over do it. Perri mentioned that her doctor told her it takes a year for the heart to completely heal after open heart, I have heard that and read that many times.

    My neighbor who lives a few houses up the street from me had triple by-pass surgery and it took him 4 months to get back to excercising. Now he feels better than he did before the by-pass, but he took the time to heal and he slowly did his cardiac rehab. And he was a wreck for a while.

    Paul, I hope you are feeling better everyday. I'm glad to hear the blues have been lifted. I think there is usually some depression associated with heart surgery, I think it is partly due to the heart and lung machine.

    Sorry for the novel, this post is long and I am rambling.

    My best wishes to you.

    Hugs,
    Eve

    Leave a comment:


  • Reenie
    replied
    Paul, I'm really glad to hear that you are feeling a little better. I'm sure it will take a little while yet, but I truly believe you will be feeling pretty good in the next couople of months.

    Reenie

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  • progers
    replied
    Thanks Jim! I hope you are right.

    Perri, why did you have two myectomies? Was the first not successful or did they not remove enough muscle? I can't even imagine going through this again! How do you feel now?

    Best wishes,

    Paul

    Leave a comment:


  • Perri Carol
    replied
    you can do it!

    Dear Paul,
    DON"T BE SO HARD ON YOURSELF! No one is going to jump up out of bed after major surgery and feel peppy--particularly with the complications you have encountered. I remember everyone kept telling me to walk. My husband said, let's go in the backyard and just walk to the fence. It looked like it was ten miles away. He went with me, and boy was I tired, but I did it. Then the next day I did it again, then the next day we went further, etc. Before I knew it, I was clocking in miles and miles on my treadmill! It doesn't happen overnight. It took a few months. My doc told me that the heart isn't completely healed for almost a year, sometimes.
    My advice to you is not to put so much pressure on yourself. Just listen to your body. If you are tired, then rest. Sounds simple, but it works. If the docs or rehab people tell you to walk, then do it.
    If you need someone to talk to, I am here, as is everyone else at this site.
    Depression is common after open heart surgery. Don't think you are abnormal or crazy. What we have experienced is scarey, no doubt about it. Our minds can do us in, we keep thinking of what happened or what could happen. If it gets too much for you, perhaps you should consult someone professionally to talk and/or consider some mild antidepressants for a period of time. There is no reason to suffer needlessly.
    You are on the road to recovery, and we are all cheering you on!
    Perri

    Leave a comment:


  • mtlieb
    replied
    Originally posted by progers
    The blues seem to be lifting a bit this last day or two, which is a big relief as I just didn't know what to do with myself I was so miserable. I am still very tired though. I have cardiac rehab today and just don't know how I will cope, but I will do it anyway. I don't think I've turned that "corner" yet but I'll definatetly give a report when I do.
    Paul, that's good news to hear. I think you'll find the changes are often so slight and gradual that you will often not notice them until one day you wake up and find "Hey... wow... i feel great today!" That day will come, and believe it or not it's going to come a lot sooner than you think.

    Take care,

    Jim

    Leave a comment:


  • progers
    replied
    Hi Reenie, Eve and everyone,

    The blues seem to be lifting a bit this last day or two, which is a big relief as I just didn't know what to do with myself I was so miserable. I am still very tired though. I have cardiac rehab today and just don't know how I will cope, but I will do it anyway. I don't think I've turned that "corner" yet but I'll definatetly give a report when I do.

    Eve, what have the experts said about the outcome of a myectomy for you? I know that there are some ways of being able to tell if you will be helped. I know you have concentric HCM, but it sounds like you must also be obstructed or else they would not be doing the myectomy, right? my surgeon seemed convinced that my symptoms were largely being caused by the obstruction, which was related to a severe case of SAM. Thus, he believed that I was a good candidate for surgery.

    I also found out that the surgeon told my wife that my surgery took twice as long as usual because of the large amount of tissue that had to be removed. Apparently my surgeon had never had to remove so much before.

    Take care guys,

    Paul

    Leave a comment:


  • Reenie
    replied
    Paul, how are you today?

    Reenie

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  • Eileen2345
    replied
    Hi Paul,

    I hope you are feeling better today.

    It was nice of you to be so thoughtful, but your experience did not put me off from doing the myectomy, but thank you for mentioning it. My 2 biggest concerns for me are 1. the concentric part of my left ventricle and 2. the stiffness of my heart.

    I hope you are geting better everyday.

    Healing thoughts and wishes to you dear.

    Eve

    Leave a comment:


  • progers
    replied
    Pam,

    I can so identify with what you are saying about the A-fib. I had it for 5 days, night and day and it would make me SOB and feel out of control and helpless. I could not sleep for more than 20 minutes before waking up. It took them 5 days to do my cardioversion and boy was I relieved when they did it.

    Meanwhile the recovery continues and at times I feel the same sense of helplessness I did when I was in hospital with the A-fib. I am trying to stay positive and hope the days fly by.

    Eve, I hope that my experience has not put you off doing your myectomy. If the experts agree it would help you then you should do it. My case seems to be unusually difficult due to all the complications and so you shouldn't think of it as normal. There are numerous stories on the Board of smooth surgeries with a positive outcome. Hopefully in a few weeks or months I can report back with positive news.

    Best wishes to you guys.

    Paul

    Leave a comment:


  • Eileen2345
    replied
    Paul,

    I know that I need a lot of time to heal. When I had my hysterectomy, I could not do anything for 3 weeks. Heck for the first 3 days after the surgery, I did not even know my name, and that was just a hysterectomy not open heart surgery.

    I am not looking forward to having a myectomy, (if indeed they do the surgery).
    There are so many times when I want to chicken out.

    Please give yourself some more time, your surgery had complications.

    Well wishes,

    Eve

    Leave a comment:


  • Pam Alexson
    replied
    Yes Paul,

    My a-fib started on the 5th day, the day they were thinking of sending me home and I was fortunate the loading doses of amiodorone( 1200 mgs) converted me just as they were about to wheel me down to the lab. I stayed 7 days and then 4 the next time and 3 for the lung drainage. The second time was when they had to convert me. I stayed on the amio for 3 months and it did not come back. They told me my aicd did record some small 1-2 second intervals as well ,but that was all. They did tell me that about 40% of people who have open heart get a-fib post op. I guess we were the not so lucky ones.

    I will share with you that when it happened it started with a bang and it was a very high rate. I had not factored this in as I had prepared myself for surgery. It started at 2 in the afternoon. I had trouble sleeping and I felt on fire. I managed to fall asleep for a short time and awakened at 3 AM nearly hysterical. It took a nurse well over an hour to calm me down and for me to stop sobbing. I told her to release me and that I had not signed up for all of this and this was not part of the plan. I wanted out and I wanted it to stop and that meant now. I had never felt so out of control of my life ever and it was shattering for me and very scary. The nurse was very good at what she did , cause she managed to help me regain control without major tranquilizers. I will tell you that 5 days is a lot on a recently operated heart and you have gone through a lot. My surgeon came in the next morning and comensed to demand info and explanation and to tell them they were to convert me ASAP. He said loudly ," you will not stress this newly operated on heart any longer, get it and get it done now , do you understand? no discussion!" Wow I was quite taken with his attitude.

    There is so much to the whole myectomy and things can vary immensely from person to person. Also sometimes I think we know too much and we can easilly become overwhelmed if we do not progress the same as others. This is why I say take your pace and try to just be day by day. It will get better.

    Thoughts for feeling better.

    Pam

    Leave a comment:


  • progers
    replied
    Hi Pam,

    Yep I know exactly what you are saying about feeling like I am dragging myself from wet cement when I get out of bed. Did you also have a-fib after your surgery while still in hospital? I did and it lasted for 5 days.

    I don't have a visiting nurse, but will have access to a cardiologist when I go to my local hospital for cardiac rehab tomorrow. They will do some repeat blood tests tomorrow to make sure nothing is abnormal. As for my diet, I am not always hungry, but do try to eat something. I know that this is important to rebuild strength.

    Steward and Lyn, thanks for your posts. Lyn, I'm not at that stage where I wake up energized and then feel my energy fade throughout the day. I wake up ok for a few minutes, then I am just exhausted. Its getting frustrating......

    I'll update on how things progress with my recovery.

    Many thanks,

    Paul

    Leave a comment:


  • Pam Alexson
    replied
    Paul, I commented in your other post about feeling likewaking from the dead after sleeping. I too did not feel energized after waking and in fact it was so difficult to do the walking due to the fatigue , I kept getting presyncope episodes. I had to stop and wait on the walking. I did go back into a-fib and believe my heart was just not on the expected schedule as I had projected it to be. It was a slower process. They had considered tranfusing me post surgery and then waited. Even with all the transfusions you have had it will take your body some time to return to it's normal.

    Additionally for me , due to all the problems , the visiting nurse visited 2 times a week for 11 weeks. Do you have such services available to you? They could bring in a physical therapist to assist you . Another thing, are you taking in high protein? It is very important to increase the protein during this bone rebuilding time. Try supplemental high protein drinks . You can have your wife add dry milk to whole milk and add flavoring . This will fortify your milk. I was told to do this for several weeks post surgery. High energy foods are important at this time.

    Feel better soon.

    Pam

    Leave a comment:

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