Seal13
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Seal13, July 6,  2020  11:22pm EST

Terrified and new to this

My brother was recently diagnosed with CHF with EF 10-15%. He is currently in the hospital on ECMO and dialysis. I'm so scared and don't know what to expect at all. I can't lose him. He's almost 43. I'm looking for any support, reality of what to expect, and best care.

  • JamesPL
    JamesPL, July 7,  2020  7:54pm EST

    Hi Seal13,

    It's very difficult to control emotions when you or someone you love have been given a diagnosis related to the heart. Please don't panic and assume the worst. Let his caregivers treat him and have faith in that treatment. We live in a world where hi tech treatments are available often leading to positive results. Many patients with low EF have turned that around after treatment and follow up recovery and rehab. Try and get as much information from his doctors as you can. What they tell you, although potentially frightening, can help you cope with the care he receives. Also understand that much of the fear is because you are not familiar with the diagnosis. When I was diagnosed with coronary artery disease requiring bypass surgery, I was stunned and scared. I came to realize that the surgery is common with a very high success rate. Please don't jump to conclusions.

    I wish your brother all the best in his treatment and recovery.

    Jim

  • AHAASAKatie
    AHAASAKatie, July 8,  2020  9:37am EST

    Good morning, please know that we are here to support you both through this time. This can't be easy for either of you. I can share the information we have on Living with Heart Failure so that when he comes off ECMO and comes home, you will have more knowledge as to what is happening. If there is anything else we can do, please do not hesitate to reach out. Best Katie

  • KarlR
    KarlR, July 8,  2020  11:46am EST

    I'm going to second one thing that JamesPL said: "Please don't panic and assume the worst.  Let his caregivers treat him and have faith in that treatment."

    I'm seven years older than your brother.  I don't have CHF.  I had a myocardial infarction (heart attack) 18 days ago.  One of my major coronary arteries was 99% blocked.  I was taken to the ER, then rushed to the cardiac cath lab for an emergency angioplasty/stent, then sent to the ICU to recuperate.

    Like you, my wife doesn't want to lose me.  In my opinion, however, it would be a bit premature for her to start worrying about my demise.  In the famous words of Monty Python, "I'm not dead yet."

    This morning, the physical therapists in cardiac rehab had me doing high intensity workouts that were very comparable to the workouts that I was doing in the weeks leading up my MI.  I might have to back off a smidge on my workouts (at least in the short term).  I definitely have to make a number of other long-term changes in my life, from new meds to dietary changes.  But my life didn't end with my heart attack.  Not even in a vague, figurative sense.

    I can't promise you that your brother will be as fortunate as I was.  He has a different diagnosis.  I was also rather fortunate.  I would say that there is a wide range of possible outcomes that are far better than what you fear, even if your brother ends up being a bit less fortunate than me.  There are a lot of people on these boards who span that range of outcomes (plus others who used to be on these boards but moved on to other things after reaching a certain point in their recovery).

    I hope your brother has a swift, smooth and successful recovery.

  • Seal13
    Seal13, July 8,  2020  12:21pm EST

    Thank you all so much! We were updated that he is being tested as a candidate for LVAD. A decision will likely be made tomorrow and if he is surgery early next week. I love the Monty Python reference as it is one of my brother's favorites and he has already said the phrase himself. I'm really glad I came to these forums!

  • Mb120918
    Mb120918, July 8,  2020  4:25pm EST

    Hi Seal13,

    Cardiac things are very scary because they are complicated and most of us don't know too much about it until we are ****** into it.  Stay as calm as possible,  your brother needs you for support right now.  Having a heart attack myself in 2018 was terrifying.  Then 6 months into that my husband had a quad bypass.  We survived and are doing well.  We both did the rehab program which is BIG for mental recovery as well as physical recovery.  In the meantime try some meditation for yourself and take some down time.  You will be able to help him more with a clear head.   I hope that your brother makes a quick and strong recovery.   You are a great sister.

    Mary

  • KarlR
    KarlR, July 9,  2020  8:19am EST

    Seal13,

    As an interesting bit of synchronicity, one of the pioneers in the field of LVADs was Dr. DeBakey.  (I believe one of the models of LVADs bears his name.)  For years, my wife worked for him (until DeBakey retired), first as a lab assistant, and then as a lab manager.

  • Seal13
    Seal13, July 12,  2020  8:44am EST

    A ventilator and feeding tube were added yesterday.

    he can't get the LVAD soon enough. Monday is the meeting to approve him.

  • AHAASAKatie
    AHAASAKatie, July 12,  2020  9:26am EST

    Good morning, I am so sorry to hear this. I just want to make sure I understand. Monday is the meeting to approve him for a transplant or something else?  Please know we are here for you and support you thought this. Best Katie

  • Seal13
    Seal13, July 12,  2020  9:50am EST

    Monday the hospital team will meet to discuss whether he is appropriate for an LVAD.

  • AHAASAKatie
    AHAASAKatie, July 12,  2020  9:52am EST

    Thankyou for the clarification.  We are here for you to listen and support as much as you need. Best Katie

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