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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

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


  • 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 ....

    ------------------------------
    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.

    ------------------------------
    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

    ------------------------------
    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




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

    Posted 10-07-2020 11:42
    Hello Mr. Platten.

    I am sorry to hear this, as you know, I have always tried to have faith and had many discussions with you regarding that.

    I know you have a big heart and to me that is it in a nutshell. That is what we are supposed to do, CARE FOR and LOVE people.

    You have done this, I have seen it. 

    Also, I still think your baby back ribs are the best I ever had!!!

    Love you brother and may God heal you.

    ------------------------------
    Scott Erskine
    Prepress Manager
    Salem OH
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  • 10.  RE: My complex issues that all they can do is make me comfortable

    Posted 10-08-2020 09:52
    Hi Bill. Thanks for being so open about your diagnosis and your feelings about it. Although I haven't been officially told that my time on this earth is limited, after three heart attacks, 13 heart caths, 7 stents and triple bypass surgery with more than 20 trips to the ER in the past year, I'm fairly certain I won't live to see 60 (I'm 57 now). I go to bed most nights wondering if I will wake up in the morning and every time I'm hit with a chest pain, I wonder "Is this the one that is finally going to take me out?". I've always been very much a positive mental attitude kind of guy but I'd be lying if I said there weren't days when that saddens me that I probably won't be around too many more years but I believe that how long you are on this earth isn't nearly as important as what you do with the time that you are here.

    To put things in perspective, people die every day at a much younger age that don't get to live long enough to have had the experiences you have had in your life up until this point. I tell my two sons all the time that every day we get up we have a choice on how we are going to live our life and until they close the lid on your casket it is never too late to change what is written on your tombstone. Also remember that doctors are often wrong and that you may have much more time than you are being lead to believe. Either way, wake up every morning with an attitude of gratitude for being blessed to see another sunrise, show as much love as you can to everyone around you and make the time you have left absolutely amazing. 

    My prayers for you, my brother.

    Best regards,
    Brett

    ------------------------------
    Brett Temple
    Project Manager
    Sarasota FL
    ------------------------------



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

    Posted 10-09-2020 10:29
    Bill,

    I can't say it any better than Brett, but I'll give you my two cents anyway.

    Our lives are fleeting as a firefly's light against the background of night, that vast eternal universe; but we are part of that universe and can no more cease being part of it when our bodies are gone than the firefly's light ceases being part if the night.

    The hero in one of my favorite scifi movies, The Incredible Shrinking Man, said it best:

    "I was continuing to shrink, to become... what? The infinitesimal? What was I? Still a human being? Or was I the man of the future? If there were other bursts of radiation, other clouds drifting across seas and continents, would other beings follow me into this vast new world? So close - the infinitesimal and the infinite. But suddenly, I knew they were really the two ends of the same concept. The unbelievably small and the unbelievably vast eventually meet - like the closing of a gigantic circle. I looked up, as if somehow I would grasp the heavens. The universe, worlds beyond number, God's silver tapestry spread across the night. And in that moment, I knew the answer to the riddle of the infinite. I had thought in terms of man's own limited dimension. I had presumed upon nature. That existence begins and ends is man's conception, not nature's. And I felt my body dwindling, melting, becoming nothing. My fears melted away. And in their place came acceptance. All this vast majesty of creation, it had to mean something. And then I meant something, too. Yes, smaller than the smallest, I meant something, too. To God, there is no zero. I still exist!"

    Peace, brother.

    Ira

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



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

    Posted 10-09-2020 10:38
    I want to thank everyone who has commented it helps and means more than words can say to people I don't know thank you for caring and your advice.

    Sent from my iPhone

    Respectfully,

    Bill J Platten
    575 W Cambridge St
    Alliance Ohio 44601
    Mobile: 234-757-6088
    In Emergency: 330-596-0440