Posted by Budof3 on 01/05/2017

I am finding myself reaching out in hopes that there are others out there that may have some words of advice for me. I feel very guilty writing this as I am not the victim of the Sudden Cardiac event rather I am the one that applied the CPR and that kept my husband alive. My story started in May of 2016 at 12:30 am. I woke to what I thought was my husband snoring and tried to wake him to roll on his side. I in a short time frame realized that something was wrong. I could not wake him and he had stopped breathing. I to this day do not know how I jumped into action but I did without hesitation. I am sure it was the higher up that was with me leading me through what needed to be done. The 911 dispatcher walked me through getting him on the floor and starting the CPR. Long story short, he did survive the event with having 6 additional events over a 6 week time frame in the ICU. I am happy to say he is alive and his mind is doing great. He is recovering slowly from the loss of muscle mass while in the the ICU. He does not recall any of that evening at all and does not understand the full impact that it had on me. We have been married for 40 years.

I can not get the sight of seeing him laying there that evening out of my mind. I find myself panicking everytime he sleeps on his back and goes into a deep sleep. I have many nightmares, have tried meds to assist and have talked to therapists (they do not understand). I want to get past this and back to a new normal life without worry all the time. Is this even possible? Hoping for words of encouragement.

Comments

Submitted by SCAFoundation on 01/06/2017

Permalink

Hi Rosemary, Thank you for sharing your experience. How wonderful that you did not hesitate to take action and you saved your husband's life! What you are describing is not unusual, based on things we have heard from others in your situation, and based on our research, which is summarized here: http://www.sca-aware.org/sca-news/the-aftermath-of-survival-from-sudden…. We will reach out to other rescuer/spouses and ask them to reply to your blog. Best wishes,
Mary Newman

Hi, Rosemary... I read your post and want to reach out in hopes I can help. I was you almost 5 years ago (2/27/12, 9:30A). Like you, I am both a spouse of an SCA survivor and his lay rescuer—Rick calls me his “wifesaver.” Our husbands are survivors, but you and I are survivors, too. It took me a couple of years of processing to embrace that fact.

First, I am so happy for you and your husband that he survived thanks to your courage and strength to take action and not panic. You are now making so many memories that may not have been. You both are on a connected yet different journey with so much to process in this first year especially. And, it takes time. Like you, my panic came later as I replayed the trauma like a movie in my head for the first year or so. It gradually eased.

I cannot know exactly what you are feeling, but I want to let you know that you are not alone—though I’m guessing it sure feels like it. You are right. It is hard for anyone to understand what you experienced and continue to relive... Yes, we are so grateful for the gift of life. But we have many other feelings as well. I learned to give myself permission to feel them all in balance over time.

Early on, I remember thinking... I am incredibly lucky, so why do I feel so sad... so scared... and so unclear… so guilty... and even grief-stricken? That is normal... And, I agree the nights were the toughest... I was afraid to sleep and watched Rick breathe. It was Dr. Samuel Sears (you can google him... great literature on this site, too) who explained that what happened to us upset our core sense of security, and it will just take a little time and effort to regain that...

I have shared my personal thoughts with other spouses and SCA survivors who are grappling with life after SCA. I hope that somehow my insights will help you push through this, just like you pushed with every ounce of strength and courage in May 2016 to save your husband… Here's what I did to help me through...

First, I went to my doctor and got myself checked out. What you are going through takes its toll on your own well-being. Stress is hard. My doctor was so kind and took care of me. We as caregivers are so focused on our husbands/families, that we are sometimes that last in line to take care of ourselves. In my case, I needed some medication to help me deal with the post-traumatic stress... I have talked with other spouses over the years and we sometimes get stuck in a loop of "what ifs." That will eventually pass as you move through this. I also sought counseling to help me understand my feelings and to learn the triggers and the science behind my fears so that I could move through it. I wish I had sought help sooner than I did. It was critical to my own recovery.

Also, I accepted help from friends, family and neighbors in the first year. They helped take care of me so that I could take care of my husband. We'd all like to think it is like the movies and a victim is resuscitated and better instantly, but it is anything but. I remember that after his release home, days would go by and Rick would not want to talk or engage in anything. I was beside myself with fear that he was always going to be this way. But, in time, he gained strength and began to be himself again. I learned later after he processed what had happened to him, that he really felt disconnected and in a bubble. He would hear me tell our story and he felt like I was talking about someone else. He lost 2-weeks of his memory, so he questioned so many things. Depression is very normal and that is why heart patients may also need medication. He went through a period of denial and that hurt me, because at this same time I was vividly re-living his event and my own trauma, which he had no memory of. There was a dissonance. But, we both came to realize that was normal. He first needed to heal his body; his emotional healing came later. We have come to respect each other’s unique needs.

It was Cardiac Rehab that really helped Rick regain his footing and incredible zest for life. For us both rehab solidified a heart healthy program to speed healing of mind, body and spirit. It was a safe place for him to exercise, which made us both feel better. And, it was something that he had within his control. He always recommends to other survivors to take action and get involved in your healthcare. It really was as much a mental boost as anything. His life had forever changed in a heartbeat, so cardiac rehab and all the people he met there were so inspiring. And, Rick inspired others there, too. So, it gave him purpose.

Later, I think what helped us the most, was getting involved in this cause a little at a time. We started first about 4 months into Rick's recovery by going to thank the EMS team for saving his life. And, after that we did the same with his doctors, nurses, caregivers at the hospital. We acted on our desire to give back to our community to advance CPR/AED training and awareness of cardiac arrest vs. heart attack. For us, that is not only therapeutic but also has helped to save more lives. I like to say that it doesn't stop with the "chain of survival" but rather it is a "circle of recovery" and giving back is part of it for us. We are now CPR instructors and volunteer with our Fire Department.

When I was about 8 months into this new reality about where you are today, other spouses told me that it was about a year before they felt more at ease. And, that came true for me as well. But, looking back, I will share this... while I hate that this happened to us, this experience has brought many, many blessings to our lives that I never realized could be in our path. I can never look at life quite the same way again. And, I live in gratitude every day.

Rosemary, I can only share my personal insights. But I can say with certainty, you have come to the right place. SCAF was a lifesaver for me… it helped me get my own heart in rhythm with this new normal and became a safe place for me to learn and heal. It was SCAF that introduced Rick and me to our new family of SCA Survivors and their families. So, consider all of us as extended family. None of us can know exactly what you or your husband are feeling, but what we do know is that we are all survivors and we all can lean on each other. We are all a part of a special club that I like to call “Heart Buddies.”

Day by day, things will get better. There may be set backs along the way, too... But I am here to share with you nearly 5 years out, life is so very good. My journey continues! And, you, too, can get through this!

With all my best to you and your husband,

Your new heart buddy, jen

PS... Please reach out any time... I'm here for you if I can help!

Thank you Jen for your words of encouragement. You truly are speaking from my mind in all that you stated. I have been trying to understand why I feel that I am greiving at times even though he survived. I am beyond grateful and blessed that he is here with me yet. I find when I tired things are always much worse. As Jim continues to gain his strength and as he has more and more good days I am finding myself able to breath alot easier and starting to look forward to doing things again. It felt so good to read your words and know I am not alone. I can not thank you enough. I think I will always fear the unknown but I do remind myself that any one of us could get struck at anytime for any reason. I am trying my best to live for the moment and to continue to make wonderful memories together.

God Bless, I will keep in touch with my new heart buddy!

Rose

Submitted by Casseopeia on 03/04/2017

Permalink

On December 4, 2016, two days after we returned from working on a home we are planning to move to in rural Alaska, my husband suffered SCA while we were sitting on the couch watching "Survivor." Like you, I realized this was an emergency, and the 911 operator talked me through getting Larry on the floor and starting compressions. A deputy sheriff arrived almost immediately and the EMTs were close behind. We had a wild ride by ambulance to a hospital with a cath lab, an hour away. Immediate use of defibrillator by EMT staff and a clot busting drug in the ambulance kept Larry alive to get 2 stents that opened his "widow maker" that was 95% blocked. After 17 days in ICU Larry was released home. We live on Washington 's Olympic Peninsula.

We are a bit older, and retired. Larry is 75, I am 70. I am a scientist, but I still cannot understand what happened. SCA is an electrical problem, but they tell us it was a plumbing issue that caused the SCA. Larry has TWO cardiologists, and now a urologist and a vascular surgeon for other issues that have come up. Larry has totally turned over managing his care to me and I feel like I am failing. And I can't answer, nor can I get a reasonable answer from anyone as to if this was electrical, why did the plumber save my life?

I have finally turned to our primary care nurse practitioner for help managing the interface between specialists. I am considering taking him to an MD cardiologist who is also a ND with the hope we can get some real answers and a plan for living!

Larry wants desperately to move back to Alaska, but I am terrified of being far from help. No one is mentioning an inplant. Because of fractured ribs he has yet to start rehab.
I need a plan, but not sure how to pull it together

Sue

Submitted by SCAFoundation on 03/13/2017

Permalink

Hi Sue, To address one of your questions, heart attacks (the plumbing problem) can lead to Sudden Cardiac Arrest, but there are many other causes as well. It sounds like your husband had a heart attack followed by cardiac arrest. This article may be helpful to you.

Hi, Rose (and Sue, too!),

I just wanted to reach out and check in with you. I'm glad that my note was helpful. And, I am happy that you are feeling more and more like yourself! It takes time for sure... and kindness to yourself. <3

Sue, what happened to your husband sounds like what happened to mine. Rick had 95% blockage of the LAD that sent him instantly into SCA. Blockage can interrrupt the heart rhythm, which is where the electrical part comes in leading to SCA. I'm only guessing that is what happened in your husband's case. They used a stent to remove the blockage for Rick. And, he does not have an ICD at this time.

All my best to you both,
Your heart buddy, jen

Been on that road for a little over 3 years now. Give yourself time, lots of time. Look for help when you need it. Be gracious to yourself as well. My story is similar. My husband collapsed in my arms on January 5, 2014, and the next hour's events are seared into my brain. I find there are parts I can talk about and some I can't. My husband has recovered well, and there have been days where I felt like he was doing better than I was. I ended up with PTSD symptoms and for whatever reason found it hard to find help to deal with it. Eventually, I was able to realize that 2 miracles had taken place that day - the first, he survived that day, and the second one was that I survived too, did what had to be done and I'm still standing even if on shaky knees sometimes. It does get better, but if you accept that there might be some bad days along the road, it helps just knowing that so that you can get through them. I am not saying very well what I would like too, but I do understand. About a year ago, I had the opportunity to walk along-side someone going through a similar experience, and I was grateful to have reached the point that I was able to do so. Those days reminded me of what I had needed, and I was glad I could be of some help to her as she moved through those difficult days. One just never knows what life's experiences will bring. And again, give yourself time and take care of yourself too.

Submitted by souleido on 07/23/2017

Permalink

Hi,
I thought I was losing my mind until I just read all these posts. My husband had a cardiac arrest 2/16 while in the hospital and being monitored. He initially entered the hospital with a racing heart and they gave him a combo of diltiazem and metroprolol which made him really sweaty and I just knew something bad was about to happen. I yelled to the nurse and then seconds later, Code Blue was called and it was like a scene out of a movie. I was holding onto my husband's foot while a team was working on him to no avail and then he died. I left the room at that point (and will never eat an eggplant again because of the color) but I can't get the images out of my head. Luckily after 5 minutes he came back, but it was dicey. At the same time my mom was dying from leukemia. My husband was in ICU for 8 days, and then flash forward to my husband's first cardioversion, (we're way beyond that now having done 2 ablations and are looking at a third or a difibrillator), where I was taking heart notes on the funeral home notepaper on which I was writing my mom's obituary. I am also the main caregiver to my father who has late stage Parkinson's. I was managing these events okay until my friend's husband just died at 54 (I'm 53 and my husband is 57) from cancer. Seeing my friend as a widow and her kids without a father has brought this all roaring back. It's clear I must be suffering from PTSD, but I feel like the only thing that can help me is time, since I can't alleviate the stress from my life because I'm still taking care of my Dad and my husband continues to have heart issues. Is it normal that I cry all the time when I'm alone in the car? Sorry for the long post :)

Submitted by lindseysmith on 10/10/2017

Permalink

Hello everyone! I am new here and stumbled across this page looking for help, and boy am I glad I found this article! I too am the spouse of a SCA survivor. The event happened in Oct of 2009 when my husband was 24 years old, fresh out of the Marine Corps and otherwise completely healthy. We were waiting on a football game to come on when he dozed off for a nap, then it happened while he was asleep. I ended up doing CPR and calling 911. He was defibrillated 8 times and went over 30 minutes without a heartbeat. I got on my face in my front yard once paramedics took over and prayed my heart out. By the grace of God my husband survived. We have no answers at all as to why this happened. Especially to someone so healthy. And he has had no issues since, PRAISE GOD! And to throw a loop into things, my husband's 35 year old cousin just passed in her sleep from SCA. Once again with no answers. My husband has had genetic testing, and still nothing. We still do not know WHY this happened. We now have a 4 year old son that is healthy, but I continue to have crippling fear for my husband and now my son. I cant even let my son sleep in his own bed because I am absolutely terrified. And I know that The Lord doesn't want me to live this way, with so much fear. So I am coming to this page for support. TO find someone like me. Who shares in my crippling anxiety and PTSD. It is so comforting to know that I am not alone. Any advice would be greatly appreciated! Thanks everyone!

Submitted by Gemarie13 on 01/09/2018

Permalink

Hello, I'm glad I found this while forlornly googling away, after yet another panic attack about everyone I love dying. My husband had a sca in November 2015, which we have since discovered was caused by brugada syndrome. Thankfully he survived, and had an icd implant.
I think I was OK after this, except for being so sad that I was not with him when it happened, and I had to wait a week to speak to him as he was put into an induced coma to help his lungs repair from aspiration. We had two children then and they were so good about it.
We have a third child now, and when she was 10 weeks old, September just gone, my husband had another cardiac arrest. He should have been shocked back very simply, but it didn't work, and the device had to shock him 7 times to bring him back. The two elder children witnessed it all, they were only 9 and 11. Again I wasn't there, as I was at home with the baby. He has had to have a new implant, and he has also been diagnosed with sleep apnoea, but since this last incident I cannot stop panicking about finding him dead, and worse, the kids. His condition is genetic and can be passed to the kids. Twice so far I have found my baby asleep with her eyes open and disturbed her thinking she wasn't breathing. I think I need to seek counselling or something! Thank you for this post though, I feel a teeny bit less insane and selfish.

Submitted by Kncrsr5r on 01/30/2018

Permalink

Since Aug 1, 2014...my wife (now 39yrs old) has survived her initial SCA and is still recovering remarkably well from her anoxic brain injury. She's on her second ICD already and has sustained 76 defibrillations to date.

Needless to say we are both solidly aware that it can happen at anytime and anywhere. The smallest thing can trigger a panic attack in either of us. Her biggest trigger is that she experience's and feels every PVC (premature ventricular contraction) and any one of these is what could start a chain of events that leads to an arythmia/SCA/defibrillation.

For me, my triggers are any number of facial expressions from her, being away from her too long, and the list goes on...

I don't have any secrets or methods we use to cope. Somehow we just keep moving forward.

Submitted by Sabrina on 10/29/2018

Permalink

I also woke up at 4 am one morning to my husband quitting breathing. I got my kids up to get the officers and first responders in as I started CPR. It's been two years. He has an icd with pacemaker. I was getting to the point I wasn't as worried or stressed. This year on the same day two years later he had another episode that was caught with the icd. The doctors had us come in for an emergency appointment. Now I feel like I've back tracked. I worry all the time. I don't know if it will ever get better. With his heart condition the only side effect is cardiac arrest. They told us that it's not if he goes down again its when. They said the icd is his insurance policy so I won't have to do CPR again. I just worry if iget comfortable again it will happen again.

Hi Lindsey,

I am wondering if your husband developed anoxic brain injury in the 30 minutes his heart wasn’t beating? Was he also not breathing? The same thing happened to my husband only he passed away due to not having oxygen for more than 7 minutes, which caused severe anoxic brain injury. The doctors don’t know the cause of his SCA and he was a very healthy 31 year old.

Hopefully, I’m not adding too much especially since your situation occurred 3 years ago.

I will add my experiences for other's to hopefully benefit from. First my story. My wife suffered SCA while on vacation out of state. I awoke at 4:44AM when she rolled into me while asleep. She was making noises I'll likely never forget and realized she was in serious trouble and with the help of 911 I performed CPR on her for almost ten minutes to the point my arms hurt. She was airlifted to a larger metro area and stayed in the ICU for 3 weeks.

Arriving home, we learned she has a VERY rare genetic heart degenerative heart condition and received an ICD. Adding to my stress, we learned our son has inherited it from her. I still, over a year now, awake at night to listen to her sounds or touch her to make sure she isn't under any distress.

I'm not sure it ever truly will get any better. I spend hours researching her disease and future genetic advancements that will likely greatly benefit my son and hope my wife lives long enough as well.

In short, this it tough road to being going down and the best advice I can share is to take care of yourself the best you can. Find things you enjoy and stay healthy.

Share