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My complex issues that all they can do is make me comfortable

  • 1.  My complex issues that all they can do is make me comfortable

    Posted 05-06-2020 15:41
    Hello,

    My name is William j Platten (aka) Bill,  I have Chronic diastolic heart failure (HCC), Coronary artery disease involving native coronary artery of native heart with angina pectoris (HCC), LVH (left ventricular hypertrophy) SOB.  I am unable to walk much without having chronic chest pains and shortness of breath.  There is no pills or surgery that will help cure my situation.  I am a patient at the Cleveland Clinic and all they are able to do for me as of now is to keep me comfortable.  50% of patients who have Chronic diastolic heart failure only make it to 5 years.  I am having a difficult time knowing that I have no future and I have been diagnosed over three (3) years ago.  I am trying to live for today not the past or my future and it is difficult because I had so many plans for the future and I always thought the brilliant physicians and surgeons there would always be something they could do for me.

    I have a beautiful daughter and two Grandchildren and it breaks my heart knowing that I am not going to be around for them.  If anyone is experiencing the same kind journey that I am on it would be nice to hear from you to see how you deal.

    Respectfully,
    Bill j Platten

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    William Platten
    Retired
    N/A
    Alliance OH
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  • 2.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 03:44

    Hi Bill,

    I don't have your exact diagnosis--mine is chronic combined systolic and diastolic end stage heart failure, as a result of idiopathic, non-ischemic, dilated cardiomyopathy with reduced EF--but I have likewise been advised there is nothing more that can be done for me, and that my time will be up much sooner than I wanted. Six to twelve months, I'm told I have left. It knocked the wind out of my sails right quick, lemme tell you.

    The way I have "dealt" so far--keeping in mind it's been about 2 1/2 weeks since I found out a transplant was not in my future, nor an LVAD, and was given the news of my impending demise--has been largely by ignoring any actual feelings I have on the issue. Otherwise, I fear I'd be unable to carry out the plans and get through the ToDo lists I have to complete before I die.

    I also deal by talking about it, a lot. Not shying away from the topic. Some people in your life may be uncomfortable around the topic of death and dying, so i wouldn't force it on them, but if you have friends and family--or a therapist--who are willing and able to have the conversations? Excellent! Having at least one person you can share your fears and regrets with can be very helpful.

    I don't know if this helps. Feel free to ask me for clarification.
    Cheers,
    Rachel



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    Rachel McGonagill
    Oregon
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  • 3.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 16:30
    Rachel,
    Thank you for sharing your diagnosis with me.  I don"t want to believe everything the Dr's say I will do as they ask of me to prolong every day that I have left on this precious planet they call earth.  I believe GOD truly is the only one that knows when he will call us home.  Everything is really surreal I keep searching for any spec of hope and need to realize its all in GODS hands.  I appreciate your telling me how your dealing with your diagnosis it seems I am doing most everything you'r doing as well.  It is difficult for my Daughter to talk about any part of this I feel so bad  I am trying to do a TO DO list and a bucket list with 10 items but I guess I am not ready because I just sit here trying to figure out where to start LOL ....

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    William Platten
    Retired
    N/A
    Alliance OH
    ------------------------------



  • 4.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-08-2020 05:45
    I'm told that, much as we go through stages of grief after someone we love has died, we go through similar stages whilst coming to terms with a terminal diagnosis. The first stage is denial.

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    Rachel McGonagill
    Oregon
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  • 5.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 09:59
    Dear Bill
    I had to reply to your note to our forum, and want to tell
    you how brave you are to share your story with us here..

    I have no perfect words for you about your future.  You have explained it all to us and now I am just digesting what it is like in your life today

    Living for Today is very important in many religions and 
    philosophies and can help us when faced with serious 
    issues like heart surgery or end of life.

    Adopting the motto of "Make Today Count" in your life
    does not mean you should forget about the past.
    Nor does it mean you should do whatever you like
    without regard for what your actions might mean
    for tomorrow, for you and for others.
    But, try to get the most out of the precious time
    available to you right now, today, this minute.

    Namaste William

    Mary H





  • 6.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 16:33
    Mary,

    Thank you for your kind words.

    ------------------------------
    William Platten
    Retired
    N/A
    Alliance OH
    ------------------------------



  • 7.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 10:15
    ​Hi Bill,

    My name is Ira.  I do not have any of your conditions at this time, but I am a two plus year survivor of emergency quintuple bypass surgery after a heart attack, with a family history of left descending anterior artery disease.  It sounds from your post that you already have explored the idea of living for right now, but I would like to expand upon that and, I hope, reinforce it.

    All that any of us have is right now, this present moment, and when I say all of us, I am including all human beings, whether they have or whether they are aware they have any illness or condition and,  in fact, all life in general.  The past and future do not exist, outside of the present moment.  What you believe is your past is only your memory of what you believe happened, whether it actually happened that way or not (try speaking with a friend about an event you shared twenty years ago and see how differently you both remember the event, or even if your friend remembers it at all).  The future is only what you believe, project will happen, should happen or what you want to happen, all based upon your present belief system, much of which is constructed by your acceptance, often in childhood, of the belief system foisted on you by parents, church and society in general.  Those beliefs form their picture of their reality, but that picture is not reality itself.  The only thing that is real is your awareness right now, that itch on your forehead, the sound of the birds singing outside your window, the sound of the windswept rain landing on your window.

    When you focus your awareness on what is happening right now, from your in breaths and exhalations, to the rest of your sensory awareness, when you learn to observe your thoughts and fears like clouds floating in the sky and waves breaking on the beach, when you learn to observe them but let them go because you know that they are merely your ideas rather than reality, then you lose the sense of past, present and future because, when you live in the now, there is no sense of time at all.  You recognize time itself for what it is, an illusion, and right now becomes eternity.  And the sense of freedom you feel is limitless because that is limitless, freedomhappinessbeing.

    Enjoy, love, fully experience your beautiful daughter and grandchildren right now.  Tomorrow isn't promised to any of us, not even to children.  The more present you are for them right now, this very instant, the more you will be there for them in their thoughts of you and in the influence you had on their lives once you have shed your body and they no longer have your physical presence before them.

    Namaste,

    Ira

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    Ira Reid
    Hoboken NJ
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  • 8.  RE: My complex issues that all they can do is make me comfortable

    Posted 05-07-2020 16:31
    I’m sorry to hear about your diagnosis. The first thing I would do is to get online to see if anyone is doing research about your illness. Seek a second opinion from a different but significant health care system. You never know. Don’t give up hope. Miracles happen everyday and patients can defy all odds. Lance Armstrong was given three months. Can’t remember for sure, but wasn’t that about 20 years ago? He’s still kicking. Not only have I lived my entire life having congenital heart disease but my entire career was in health care and in cardiology. I’ve seen many examples, including myself, of patients defying the odds and showing that doctors don’t call the shots, God does. Enjoy your life. Take care.

    Sent from my iPhone