End of Life

I have had cardiomyopathy w/severely low EF for 18 years. I am on my second pacemaker. (1st one only lasted 5 yrs). My Cardio recently told me all I have left to do is a mechanical heart or a dobutamine drip w/a port. I would like to know what the 'end of the road' will be like. I would like to avoid the 2 options I have been given.  I imagine I'll feel like I'm drowning at some point. Anybody out there on one of these options & what is it like?  I was told this week I am no longer able to be considered for a transplant due to my age, failing kidneys, & sensitivity to a lot of different meds. My cardiologist is on the transplant team so I believe him when he says I am no longer able to consider a transplant. Right now I am still doing ok but things are becoming more difficult. I think my Cardio is preparing me for the not too distant future. Anybody at the same place or worse???


4 Comments

End of Life questions--Hospice is there to help

by Gotrhythm - 2019-03-08 12:12:19

A good friend found himself where you are last fall. Heart failing, kidneys failing, transplant no longer possible. Though of course there were emotional ups and downs, like you he was willing to approach the final chapter of his life with open eyed courage. But as you have discovered, a terminal diagnosis brought up questions he had never before given much thought to.

What he didn't know until I told him was that he didn't have to walk alone--there was help and guidance every step of the way through Hospice. 

Hospice serves people who are dying and their families/loved ones. Their primary aim is to make death, and the months leading up to death, as peaceful and comfortable as possible. These days they not only offer support for the person who wishes to die at home, they also will serve people in nursing homes and hospitals. 

The doctors and nurses at Hospice are skilled in what is called palliative care. Palliative care is all about giving people the best quality of life possible, even though the person has a "terminal" diagnosis. They understand the best use of drugs and other comfort measures.

Under Hospice care, no one needs to die in horrible pain or gasping for breath. These symptoms can be managed in ways that make you comfortable and yet allow you to be as conscious as you wish to be.

You wil probably need to ask your doctor to refer you to Hospice. They have seen your diagnosis many times and can answer all your questions. They can help you plan how to make the most of the time you have and also how to have ease and comfort.

The big mistake people make is not calling Hospice until very late--when Hospice could have and would have been helping them and their families for months.

My friend was a Hospice patient. They helped him know which drugs to continue and which to stop. They helped him to know when it was time to turn off his defibrillator. The last time I saw him he was standing on his front porch, laughing with friends, drinking a beer and smoking a cigar. He slipped away sometime during the night.

God bless. Private message me if I can tell you more about Hospice or help in any way.

Knowing, and then the reality....

by BOBTHOM - 2019-03-10 15:02:33

I have been dealing with heart failure, cardiomyopathy and an EF 24% in 2005, down to 10-15% in 2016, battling the whole time and convincing myself I could overcome it.  All research in 2005 indicated 50% gone in 5 years, another 40% gone by 10 years.  Here I am, in year 14 of 10 and still fighting.  I changed diet, took vitamins, exercise, etc.  I argued with doctors, fired the bad ones, discontinued drugs that were causing more harm then good, etc.  All of which has kept me here as long as I have been.  Now though, was placed on pallative care in Dec 2018 and treatments are limited, and hospice/assisted living is close at hand.  Although I've known since 2005, now, the reality of end of life being close at hand has set in.  I am still fighting, still pushing but, yes, I know the end isn't far off, at this point probably months rather than years.  It's not easy to live with, but I've kept busy making sure my life is wrapped up.  Everything from finalzing my will, making sure all accounts and insurance has appropriate beneficiaries, throwing out all the "cherished" momentos.  I scanned all photo's, burned them onto cd, and threw out the orginals. The hardest part continues to be reassuring family that I am doing just fine to reduce the stress on them.  Not sure where I'm going with all this but you are not alone and it's not easy, just don't give up to soon.  Find small things to amuse yourself, appreciate the little things.  I'm planting a couple of tomato plants and am almost certain I won't get to have any, but it will be fun to watch them grow, and who knows, maybe I'll get another "'mater samich"!   If you want to pm me feel free to do so but if your purly looking for a cheerleader I am probably not the best one to talk to.  I wish you well both in this life and in what comes next!

Drip and mechanical heart...

by BOBTHOM - 2019-03-10 15:19:44

Almost forgot, they should have told you, once they put in the drip it's pretty much 6 month to a year.  For the mechanical, you probably mean left ventricular assist device (LVAD).  The qualifications for it are almost as strict as for transplant.  If you have other issues, lung, kidney, etc you will probably not qualify.  If you don't have a proper "social support network" (family/freinds to feed, cloth, dress, take meds, get to doctors etc) you probably won't qualify.  If you can't tolerate medications such as steroids and anti rejection, you probably won't qualify.   Yup, the knowing it's coming and the reality setting in is hard.  My plan, I've been stocking away the morphine and when the time comes will down it all in one gulp rather than be laid up in bed on tubes for feeding, breathing, etc. I do not want to go out a vegetable.

End of life

by DMJ - 2019-03-13 21:41:53

I think it is a good thing to know when our end is coming.  Get all our ducks in a row.  You can make peace with those you need to and know you did the best you could to say good-bye.  I'm very blessed to be a patient at Brigham Women's in Boston.  They have a Palliative care unit that treats all different kind of illness.  They would keep you comfortable and ease you way.  It is similar to hospice, yet they also help people who are still in treatment.  You need to get a DNR and make your wants known so you won't be put on any machines to extend your life, just to be kept from suffering.  We will all be there one day, embrace it.

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