Experiences of a Caregiver Managing Congestive Heart Failure

Katharyn Brady By Katharyn Brady, 6th Apr 2015 | Follow this author | RSS Feed | Short URL http://nut.bz/1uo0__t9/
Posted in Wikinut>Health>Recovery & Coping

This is a short story of some of my experiences as a care giver to my husband who has Congestive Heart Failure.

The beginning of Congestive Heart Failure.

On May 11, 2015, I will have known my husband for 19 years. He has been the best gift I could have ever asked for and I've treasured all of the memories we have built together over the years.

One year after we met, he was diagnosed with Congestive Heart Failure.

This means his heart is not able to pump sufficiently to maintain blood flow to meet his body's requirements.

It all began when we noticed that his stomach area became larger and we could hear water sloshing inside of him. He would feel like he couldn't breathe.

Having suffered a back injury, he was seeing a chiropractor who took an ex-ray of his spine and pointed out that he saw he had an enlarged heart.

All of these signs caused him to reach out to his general practitioner who suggested he had asthma and he should just use an inhaler.

Before the internet, old fashioned research.

We were not buying this diagnosis of asthma. Since this was the year 1997, there wasn't a "WebMD" to consult. However, we were fortunate to live near the Stanford Medical Library and did our research there. What we found was frightening. He had all of the symptoms of heart failure.

His sister succumbed to this disease at the young age of 44 and his grandmother at the age of 63. Michael was only 42 years old when this started happening to him.

Maybe I was in denial because I was so in love with Michael, but I didn't fully understand the magnitude of this disease. I thought one day it would just go away and our lives would return to the way that it used to be.

I will have to admit my ignorance was bliss as I didn't stress about the things that could potentially occur in our future nor the events that would eventually take place.

Thank God for excellent Cardiologists.

18 years later, he is still alive because of the great care and forethought he has received from his outstanding cardiologists. They felt he was at risk of his heart stopping one day, causing them to implant a defibrillator and pace maker.

If it wasn't for this device, he would have died in 2009. That was the first time his defibrillator fired. It was around 2:00 a.m. He is a night owl and likes to stay up late. On this particular night, he felt like he was losing consciousness and hollered my name with his big booming, Barry White bass voice. By the time I made it down the stairs, he was sitting up on the couch with wide eyes. I asked him what was wrong? He said his device fired. We just looked at each other and wondered what should we do. We didn't do anything until the next morning when we reported it to his cardiologist.

His cardiologist explained the device did exactly what it was supposed to do and was the reason it had been implanted.

Although we felt stressed, we were relieved at the same time. He was still alive.

Witnessing the defibrillator fire for the first time and experiencing the trauma.

The years 2010 and 2012 were difficult years as his defibrillator fired numerous times. Several medication changes and an ablation seemed to get it under control. In all of those episodes, I never actually witnessed the device firing.

On October 26, 2013 that would change. I had undergone a partial mastectomy to remove a tumor from my breast and was at the beginning of a 6 week recovering from this surgery.

Both of us were in the living room watching TV when Michael began to panic. After his many experiences with his device firing, he now knew the signs. There was a low whining sound which was the device charging and getting ready to fire.

He looked at me and cried, "oh no, oh no". I said, "what, what"? His head dropped down to his chest, the air rushed out of his lips and he lost consciousness.

Seconds later his chest heaved violently forward and then he was conscious once again.

Witnessing his body go lifeless was so traumatizing for me. Since I was somewhat bed ridden, I stayed home and our neighbor volunteered to be his advocate and make sure he got admitted without any issues.

I lay on the couch and cried for a long time. It was the first time in all the years that he had been managing the disease where I faced the reality of his possible death.

Cancer diagnosis.

That same year, I was diagnosed with a rare cancer called Malignant Phyllodes Tumor. Over the next 9 months I would experience 7 surgeries, 33 sessions of radiation, 5 cycles of chemo where I was hospitalized for 5 days each cycle and 1 infection from the chemo port which had to be removed 3 weeks after it was implanted.

With a new medication routine, Michael's heart failure became quiet and for the first time in my life, I was the patient.

Every 3 months Michael visits his cardiologist to be evaluated as to whether he should become a candidate for a heart transplant. Each visit he has received good news, no activity was recorded on his device. The medications were working really well.

In December 2014 he caught a cold. There was nothing unusual about it as a week later it was gone. But, in the middle of January he developed a cough. When it hadn't subsided by the end of February, we became concerned that it was the beginning of heart failure. But, all of the tests proved that to be negative.

Houdini

The cough just wouldn't go away. It was now April. Michael scheduled an appointment with the Ear, Nose and Throat (ENT) doctor to determine if this was nothing more than a sinus infection that was creating mucous and draining into his throat, possibly causing the cough.

Tests were also performed by a pulmonary technician to rule out any damage to his lungs due to one of his medications, Amiodarone.

It wasn't that the cough was annoying, it was cutting into his quality of life. He often times would drape himself over the couch, laying on his stomach to try to keep from coughing which often times led to choking and eventually throwing up.

One afternoon, he hollered my name in that same voice that creates a chill up my spine and panic in my very being.

I ran down the stairs as quickly as I could. As I got to the bottom of the stairs, I saw his body laying on the couch lifeless. I gasped. Seconds later his body bounced up. His defibrillator went off.

I screamed and immediately turned around to get to the landline so I could call 911.

"911, what is your emergency?" I turned around to look at my husband and describe what had happened and I was speechless. My husband who had been lying lifeless on the couch was gone. I stammered as I tried to speak to the 911 operator and said, one moment, I need to take a breath. "My husband has congestive heart failure. He was unconscious and his defibrillator just went off." As I was speaking to the operator, I continued walking. This was such a surreal experience. Then I looked around the corner of the wall. There he was sitting up calmly on another couch, putting the blood pressure cuff on to check his blood pressure. I was confused. He said, "don't call the ambulance". I said, "your device went off". He said, "it did?". He didn't even know what had just happened. "Are you sure you don't want to go to the hospital?" "No", he said. "I don't want to go".

I apologized to the 911 operator who could hear our conversation. "I'm sorry, my husband says he doesn't need the ambulance." The 911 operator was so nice, "That's okay mam. We are here for you. Call us if you need us". I said, "I'm sorry to have been a bother".

I am always shaken after these experiences, but this one was especially difficult as it was the second time I was witness to the process he goes through when his defibrillator fires.

I always allow myself to feel my emotions, find someone to talk to about it and come back to that place of being centered and present. I've learned over the years not to think about the "what ifs" as they are a waste of valuable and precious time. It's all about the here and now.

We'll never know if there was anything in particular that caused the arrhythmia but as of now, his heart is quiet again. That is a good thing.

Tags

Heart, Heart Attack, Heart Attacks, Heart Disease

Meet the author

author avatar Katharyn Brady
I have survived cancer multiple times. It took 8 surgeries, 33 sessions of radiation and chemo therapy. My focus is on being healthy in mind, body and spirit and helping others do the same.

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Comments

author avatar Legend
6th Apr 2015 (#)

Be strong and may you enjoy the best of health in all circumstances!
Please don't neglect your own health in the meantime..

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author avatar Katharyn Brady
7th Apr 2015 (#)

Thank you.

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author avatar Melissa Dawn
6th Apr 2015 (#)

I felt like I lived through this with you. Kudo's to your husband for not just surviving but thriving these last 19 years. Also, kudo's to you lovely lady for surviving your own journey.

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author avatar Katharyn Brady
7th Apr 2015 (#)

Thank you, Melissa.

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