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New to Spouse's having HF. Need Support.
Just found out my spouse has HF. First, he had pneumonia, then respiratory flu, then diagnosed with asthma. Another doctor said they were going to put a stent in. When the doctors got to the heart, there was no blockage. No need for stent. He had diseased left ventrical in heart, pumping only 10 to 15% of the need.
I am new to all of this. He seems in denial one minute when I try to talk about it, and wants to get a new will the next time. I am being as supportive as I can, not perfect. But i feel alone, especially with the covid virus. If he gets covid, he'll die.
I am staying up all night eating. I am afraid that every time I look for him, he'll be dead. I can't stand it. I am so sad and feeling helpless.
JamesPL, April 14, 2020 6:26pm EST
I am so sorry to hear about your spouse. Your concerns are very understandable and are a normal reaction by anyone experiencing heart failure. Please don't panic. While your concerns are understandable, it is important to remember that treatment for the heart in this advanced technological world is amazing and sophisticated techniques are becoming routine. I had a quintuple bypass operation and was extremely scared going into the OR but I came out with a positive attitude about recovery. That helped me to get through it and return to my normal routine prior to surgery. I would urge you and your spouse to remain as positive as you can.
Taking as much caution as you can during this pandemic is obviously important. Concerns of COVID-19 are a concern for everyone even though those with underlying issues are more of a concern. I to have my concerns and rarely leave the house because of it. That's all we can really do.
I wish you well and please stay safe!
AHAASAKatie, April 15, 2020 9:02am EST
I am so sorry that this has happened to your family! Please know that we are here to support you both. I can share the information we have on managing Heart Failure and also on COVID-19 as it regards to patient and caregiver needs.
This is a lot for you both to take in and we are here for you.
Kosof, April 16, 2020 8:26pm EST
I am so sorry ..can't they put a d fibralator in
Kosof, April 16, 2020 8:28pm EST
Does anybody in have any information on living with an ejection fraction of 35 I am 69 years old does anybody else have this were you told that you need a defibrillator immediately can I get some feedback from anybody thank you
jerzeycate, April 19, 2020 9:16am EST
I remember when I became suddenly very sick, my EF went from normal to 11% in a matter of weeks after a viral infection decimated the electrical system in my heart. They told my husband that, without an immediate transplant, I had 3 months to live. That he should "Take her home. Make her comfortable. Get her affairs in order. That cardiologist was immediately asked to never again return.
That, my friend, was 7 years ago.
Seven years of life--struggles, troubles, a whole lot of work by everyone...
But Seven Glorious years.
My EF is now and has been for several years 55%-- Normal. BNP is under 50... CHF in Remission (aka "Compensated") COPD minimial. Kidney function has returned to normal with no residual effects.
There is hope.
There are treatments and interventions.
This is not a death sentence.
I watched the fear in my husband build, then ebb and flow as we began to realize there was a possibility for recovery.
For several years he would not leave me in the house alone--not even to go to the corner store.
Here is a Blog I wrote about how my illness, in this instance a Stroke caused by a bout with AFib. impacted him.
Stroke comes out of nowhere.
Often Strikes without warning.
We all know someone...
Maybe it’s a child.
Stroke holds many secrets.
Loves to take prisoners.
Shows no mercy.
Changes lives forever.
Leaves families in ruin.
Everyone is thrown into the turmoil of abrupt change.
Things will never be the same again.
And that’s a "best-case scenario."
I had a mild Stroke. My recovery was swift and quite successful.
Yet I still suffer from leftover troubles –
fear of another Stroke
random bouts of depression
loss of self-confidence
the inability to multitask
Short Term memory problems
emotional swings I worry they may "take me over the edge."
I am viewed as a “Successful Recovery.”
My Stroke was quite a while ago.
Like many Stroke patients, it was weeks, a couple of months before the haze cleared and I could see the effects the Stroke had on my life.
Fortunately, or unfortunately, my husband saw them immediately.
That morning he rushed me to the Ophthalmologist's office when I woke up with a strange, pain inside my eye.
While my eye was fine, the “Eye Doctor” said I was having a STROKE.
I thought he was nuts but went to the hospital willingly since the pain in my eye hurt was so bad.
By the time we reached the ER (half-a-mile) I had the telltale facial droop, my right hand could not grasp anything.
I was dragging my right leg behind me.
My husband spent hours, days, pacing the hospital.
Looking for all the information he could find.
Quizzing doctors and nurses about my treatment.
Watching my therapy sessions as I got back on my feet.
Checking for signs that things were getting better or getting worse.
Talking to doctors, nurses, therapists, and caregivers of other patients about my progress…
“What should I expect?.”
He encouraged me.
He held my hand.
He promised me that I would be "fine."
He repeatedly gave me the Hope I needed.
Telling me that everything would soon be "back to normal."
All the time fearing, knowing, it wouldn't.
Preparing himself for the worst.
Then, as suddenly as Stroke appeared, I was declared stable.
It was time to go home.
We realized things would never be quite "the same" again.
This was a major upheaval in our lives physically, emotionally.
It touched the very core of our souls.
Even if I had a full recovery - Everything was changed
He faced his worst fear- I was going to die.
He stood nearby while doctors examined, assessed, and treated me.
Sat nearby while therapists worked with me.
Then he took me home.
It changed us.
Changed us as individuals
Changed us as husband and wife.
A "New Normal" comes for each of us recovering from Stroke.
It comes as a new way of looking at situations…
Working to get through or go around them.
While everyone works with us to make these transitions, our families are usually left to fend for themselves.
The attention of the doctors, nurses, therapists, was on me.
Not my husband.
No one asked him how he felt, "about the Stroke."
No one held his hand for comfort.
No one examined him.
No one explored,"What hurts?”
No one questioned him about his concerns?
No one checked his vitals.
No one cautioned him to watch his level of stress.
No one brought his meals.
No one checked to make sure he was getting proper sleep.
No one suggested he schedule breaks, rest when he got tired.
He heaved a sigh of anxiety and relief and took me home.
Got me settled.
Then headed to work, to pick up groceries…
To complete one of the hundreds of chores necessary to keep us going.
Panicking each time his phone rang.
Wondering if he would return home to find his worst fear come true.
With the "New Normal" we recognized life had changed.
I was struggling.
I was learning to adjust.
I was mastering ways to adapt.
So was my husband.
But in his case no one noticed.
I wish you both well as you begin this journey. The road is long and treacherous...But there are many here to help you navigate the path. Remember to take care of yourself.
It's A Great Day To Be Alive.
jerzeycate, April 19, 2020 9:30am EST
Please change your note to a new thread so that it will be read and we can send you information and resources. My EF was 11%. They implanted a Complex Cardiac Device, along with multiple other treatment protocols. It's 7 years later and my EF, though run by a device in my chest, is perfectly normal 55%.
It's A Great Day To Be Alive...
Cartom, April 22, 2020 10:52am EST
I can't imagine how it is to be the caregivers.....just had my 2nd echo done and my EF numbers are still at 10%....still living at 10%❤️....but,on my way to my appointment I prayed that whatever it is I'm ok with...We just need to get a plan in place....I am Godfidence he will help me every step of the way....I am truly blessed with the gift of life....Enjoy every waking moment....watch the sunrise and sunset....such a beautiful gift this little things are....I pray that God we help your husband and you with his healing hands!!! God Bless....one blessed day at a time!! Lots of love and many blessings to you!!
jerzeycate, April 23, 2020 6:24am EST
I was at 11% for months even though I did every single thing the doctors said--including all kinds of lifestyle and dietary changes, and everything I could find researching cardiac issues. It was heartbreaking and took a great deal out of my husband and I as well as others in the family. In my case, they wound up implanting an experimental Complex Cardiac device to buy some more time. Well, within 24 the device had taken over all the electrical functions that were decimated by the virus that attacked my heart. Within 3 months my EF went up to 30%.6 months later it was at 55%--perfectly normal
My heart has stayed in the normal range for 5 years. It took a whole lot of work and many miracles. The first 5 years were very difficult as there was a lot of residual problems. Today COPD resolved, no residual effects. CHF--in remissions (aka compensated) no current symptoms. Kidney failure resolved with no residual effects. GI issues are currently responding to treatment.
It the beginning of this journey I had 46 doctors and providers working on my care. My PCP was the Ring Master. These days all but the PCP, and my Primary Cardiologist are the show. The rest have been benched but are right there in the eves should we need them.
That's the very short Cliff Notes version of my journey..
But what about you?
How did that appointment go with your doctor?
Do they have a plan?
Let us know...
Know that we Aae here for you.
I know that you are afraid. I know because, though I was a very brave person, that place you are at is one where I'm not sure anyone would not have fear in their hearts. My faith was strong but severely tested.
Someone told me to work on taking that fear and using it to fuel my recovery. Tough as it was, I found out it was possible.
Even more important
Once I realized I Was Brave Enough...Everything Changed.
Once I realized I was Brave Enough...Everything Changed.
You are Brave Enough to take this on.
To work with your medical team.
To look your mortality straight in the eye and say-- Nope...I'm not going down without a fight.
Listen, my friend, if I was to say "It will all be fine." I'd be lying to myself and insulting you.
The stark reality of life is that none of us is promised tomorrow.
We have been given a gift.
Most people aren't in the shape you are, I was.
Because they don't survive.
Often during the initial cardiac event (whichever it might be)
We have the chance...
The chance to work with the finest doctors in the world to find a way jump-start our health and our heart function so we can live another day.
The chance to make peace with life's battles and begin to truly enjoy the simple things.
The chance to heal relationships.
The chance to make amends...
Most people never get the chance to take care of this business. While it seems to be an ongoing project I tell you you've never felt such joy in your life, freedom in your life as you will when you begin to take full advantage of this chance.
You get moving. on getting better.
Whatever the doctors "recommend you do" is Law.
It's going to be a long difficult battle.
It's is certainly possible to win.
Said I had 3 months to live...
I called it a three-month-expiration date.
That was Seven Years Ago last month...
7 years later and I'm still "walkin the halls takin names..."
So.my new friend....Fellow traveler
You are strong.
You are powerful.
There are no limits to what you can overcome. Live through. Suffer through. Win over.
You are stronger than you think.
You are forceful. Fierce. Tough. Indestructible.
You are a champion in this life.
You play on a very strong team.
We are your teammates.
Together we are unbeatable.
Together We are Brave Enough...
It's A Great Day To Be Alive...