So discouraged and deflated

I'm not a trusting person, especially doctors. But when I started to feel better after my ICD implant surgery, I began to hope. I let my guard down and just accepted the positive reports and my life had a green light to go again. It felt amazing. For a month I was so elated, and I finally let go of 10 years of negative thoughts about my condition. 

Then I got the shock from my defibrillator on Monday. I had the idea that unless I did something physically demanding, I wouldn't have to worry about getting shocked. Maybe it was naive, but that train of thought was comforting. But I was fully relaxed when my heart freaked out, leading to me passing out before the jolt. 

Now I'm at a loss for words. I feel betrayed, scared, hopeless, sad, and a lot of other very unhappy emotions. Most likely my doctor will restrict my driving, which makes me feel trapped and without freedom to even go to the store. My mother is legally blind so I've been her driver, now she won't be able to count on me for her most basic needs. 

When I agreed to getting this device, they said I could get my life back. I didn't want a safety net, I wanted to LIVE. Now I'm terrified of another shock, not just because of the negative experience, but what it will take from what little life I have left. I know it saved my life, but being confined to my house, not being able to help my 79 year old Mom, no trips because my daughters have a pathetic car, and having to rely on someone else to take me places... I didn't want this. 

It's possible that my potassium level dipped too low, I got tested today but haven't gotten the results yet. I'm just so discouraged. Everything I feared would happen, has. No one really understands how devastating it is to finally believe it's going to be okay, only to have the rug pulled out from under you. My family and friends try to be as supportive and understanding as they can be, but they don't fully grasp having a bulky device in their body that has the power to bring you back to life whether you want it to or not. 

I'm still sore and feel like I've lost so much ground. Thanks for letting me vent, it helps in some abstract way. 


10 Comments

You will feel well again

by Gemita - 2023-12-07 05:22:58

R2D2, I can only assume that you have now spoken to your doctors and  have received some news about your shock and what to expect next?  Your comment, “when I agreed to getting this device, they said I could get my life back. I didn't want a safety net, I wanted to LIVE”, is very powerful.  

Heart failure is a debilitating, cruel disease with many ups and downs, but you have already shown us that you have been able to live well for one month, one month that may not have been possible without your strength of mind, your “CRT” device to optimise your pacing and without a back up defibrillator to save your life in the event of a dangerous arrhythmia.  The device and YOU have already achieved this. You really are stronger than you think and so is that not so little, uncomfortable device of yours.  

There is nothing wrong with hope.  It is a very positive, powerful emotion, perhaps so strong that it has already helped you to live well for one month without any events.  If you let hope go and start to doubt, this will not help you to manage your condition any better.  I would go for hope, self belief, self trust that we can make a difference.  Positive emotions will certainly help you to "feel" better.

I can understand the part of not trusting others, but try not to lose trust in yourself.  Self trust keeps me going, helps me to manage my health conditions and those of my husband’s.  Without self belief to make the right decisions about my own health, I would be lost.  I do not rely on my doctors to keep me well even though I need their help sometimes.  There is only so much a doctor can do.  We hold the key to success or failure of any treatment and mother nature will always play her part too.  

There are members here with ICDs, with CRTs and many other different devices who frequently face disappointment, doubt, fear for the future but still have moments of sheer joy to be alive.  You are still in this category in my eyes, having just had one month of feeling well, then without warning you get a nasty shock.  If this turns out to be caused by potassium or other electrolyte abnormalities, then replacement electrolytes will certainly help.

Perhaps you will need to stop driving for a while to see whether your arrhythmias can be stabilised, but would this be such a bad thing?  Would you want to have an accident while driving?  My husband and I both gave up driving some years ago because of episodes of syncope due to our arrhythmias.  We believe it helped to protect us and the lives of many other road users.

With arrhythmias, we will never know how they will behave, what will trigger them and when they will occur, particularly if we have other conditions that make arrhythmias more likely.  I do know however that any stress or negative emotions are not good for my arrhythmias or for my health in general. 

I know you feel betrayed, scared, hopeless, sad, and a lot more. I know you fear your driving will be restricted.  I know you worry about your Mom who relies on you.  I know you feel no one really understands how devastating it is to finally believe it's going to be okay, only to have the rug pulled out from under you.  These are all emotions that I and others here have felt and perhaps continue to feel at times . . . but then we have a good period and recover our sense of hope, our desire to continue to live as well as we possibly can.  I know you will find a way through this and we are always here to support you.  My husband has heart failure.  Has many ups and downs but he wants to live to be with his family.  I am sure it is the same for you too?

Stages of grief

by Lavender - 2023-12-07 07:40:01

I think you're just now going through the stages of grief at the realization of the seriousness of your heart's condition.
 

Perhaps you thought it was a one and done-get an ICD and your troubles are over. Now since you have had evidence of the need for the ICD, the depth of the problem hits home. Being relaxed during a shock is probably not uncommon. Be sure to ask your doctor more questions so you're informed of what's possible and what the ICD does and how.  Knowledge is power, understanding your own body will help you cope.

You got this device because you wanted to live-without it, you would be dead. There is no going back-only forward.

You were diagnosed in 2014 and have been having a lower EF since then. You and the medical team got to the point where something had to be done.  The ICD is not a fix. It's there for when the heart needs it. It doesn't heal you, it protects you. 

It seems you're going from sad to angry. That's good. That anger will carry you forward. 

As for traveling and driving and helping your mom, there are lots of ways around that:

Bus tours together 

Getting an uber and going to shop

Instacart delivery of groceries 

Setting up ACCESS type Medicare rides to dr appointments
 

You will get through the stages of grief and to the point of acceptance.  It can't be rushed. I am glad you had this bitch session. You have every right to complain, but then once you've done so...fight back and find other ways to do the things you enjoy ❤️💚

 

Post from the Heart

by Penguin - 2023-12-07 08:03:11

Hi R2D2, 

I’m grateful that you chose to tell us how you feel. Please don’t apologise for venting - it helps to vent to relative strangers sometimes and to write it all down. 

Your words are from the heart and I am sure that many of us can relate to them.  I took on board what you said about family and friends, ‘as supportive and understanding as they can be, they don't fully grasp having a bulky device in their body that has the power to bring you back to life whether you want it to or not.’  It can be really hard to say those things to people close to you. Thank you for choosing to say them to us and for feeling like you could. You’re not talking into a vacuum here - we hear you!

 Lots of people feel that their devices have the power to save them, but that they also take away an element of control - control to choose what we may not want to put up with or deal with.  It’s important to acknowledge those feelings and to evaluate them later when your initial reactions to this shock die down.  You may feel differently and if not, perhaps it would be helpful to talk them through with a professional - but don’t deny them. 

 It sounds to me that like so many women, you have been a ‘supporter’ yourself to your mother, but your own needs are now coming to the forefront.  Ask yourself what would your mother want for you. Would she want you to compromise your own health and well being or would she want you to talk it through with her or the rest of the family and find some solutions that work for you both? 

Keep well R2D2. I hope that others with defibrillators who use this forum will contact you. I’ve read similar posts from others in your situation. How you feel now is shared by others too. You are definitely not alone with this.

Crying...

by R2D2 - 2023-12-07 19:41:18

You guys.... I could hug you all! I needed to read those comments so badly, for some reason I'm not getting notification emails when someone responds. I read your responses just now and am flooded with emotions. Every afternoon since the shock happened, I've been feeling like I'm going to pass out again. My potassium test result came back 4.5 which is great. But now I'm so worried about what could have caused the episode, I think my body is bringing on these feelings of passing out as an anxiety response? Is that possible? 

What you all said was amazing, and I feel better already. I don't know how to thank all of you, I'm going to apply everything and fight to get my hope back and my negative thoughts at bay. 

My appointment with the doctor that put my device in is next Thursday. A week to wait. I live in a very rural area, there is no taxi or transportation other than to my medical appointments and my boyfriend of 10 years is awesome about driving me so I rarely need help with that. 

All of you are right. I need perspective. I need to evaluate what happened and decide where I want my emotional health to go. I'm a fighter, we all are. So I'm gonna get my hope and joy back! 

 

Post traumatic stress

by Lavender - 2023-12-07 20:42:40

You're most likely having anxiety. 
I had been fainting for six months before finally while wearing a thirty day heart monitor-ten days into wearing it-I dropped dead on my livingroom floor at ten pm. My long term boyfriend didn't know CPR but thought my death rattle sound was me choking. So, he punched me in the back as I lie on the floor. Inadvertently, he had effectively done a "pre-cordial thump" which restarted my heart. 

I had already been having a near death experience. 

I ended up in the emergency department and got a CRT-P two days later because it was the soonest I could get scheduled in. 

After I got home from the hospital the day after the pacemaker insertion, each night at ten pm I started getting anxious. It was like my body was awaiting disaster. I became afraid every evening. 

I started to not want to be alone or leave my house. I felt impending doom. I kept thinking about how close to death I was. My heart had stopped for 33 seconds. 

My pcp said I had PTSD. He prescribed medical marijuana. Lol. I didn't get it. Instead I talked with my friend-who is a psychologist. She pointed me to the YouTube Michael Sealey self guided meditations. I also used headphones and listened each evening to calming music. Most importantly, I prayed the anxiety away. I wasn't going to let this fear cripple me. 
 

I started going out alone again to shop or meet friends for lunch. I was very nervous at first and happy when I got home-but proud of myself for conquering it. That was all almost three years ago. I do what I want. I don't need anyone to do stuff with me. 

You are going to conquer this too. ✌🏼
youtube-Michael Sealey-anxiety meditation 😘

Lavender

by R2D2 - 2023-12-07 21:00:00

I think understanding the reasons behind the symptoms is most of the battle. My anxiety has varied and adapted so much over the last several years, it's hard to conclude it's just anxiety rather than something truly dangerous. But with your help, I'm realizing that anxiety has many symptoms and faces. I've never been through anything genuinely tramatic before, let alone passed out. My doctors were actually surprised that I didn't which should be a sign that I've been very lucky up until now, and my body passing out was actually more of a normal response. 

Normal... now there's a word. Nothing I've felt lately (this last year) has felt normal until this last month. I will get that back. I know me, and I'm not going to allow the negative thoughts to hurt my progress. 

Never stop believing that you can win this battle

by Gemita - 2023-12-08 05:14:33

R2D2, I know all about anxiety when I look back and remember receiving a diagnosis of a rapidly growing metastatic melanoma with a poor prognosis in late 1989.  Had left axilla surgery in 1990.  This happened after receiving a few years earlier the all clear from a biopsy on a large tumour in my left armpit.  The worry, the fear of what could happen made me ill, more so than the cancer itself.  Anxiety and fear can eat away at us, reducing our ability to function and to stay well. 

With heart disease too, we have only so much energy in store and we need to build up our reserves slowly, avoiding stress and all those negative emotions that can be so harmful, especially to our heart health.  Why do you think we say “a broken heart” after a bereavement.  A broken heart can certainly cause major illness.  You are experiencing a type of bereavement by way of a loss of normal heart function and a loss of strength and control.

I believe you passed out because you had a symptomatic rhythm disturbance which adversely affected your heart function and blood flow to your brain and other organs.  You then received a shock from your device and other therapies to try to get you back into normal sinus rhythm and these therapies caused your loss of consciousness.  Your anxiety levels would have been sky high because of this, but I do not believe it was anxiety alone that led to your heart rhythm disturbances, leading to a loss of consciousness.  I believe it is more likely to have been your heart function.  When this hopefully slowly improves with CRT or other treatments, you should notice that shocks will become infrequent, if at all, or will no longer “floor you”.

Notifications have been lost because the Club is going through some changes.  We have been advised that we have a new website hosting provider and we are having some teething problems.  You will need to keep checking your posts for any comments, or check for any private messages.  Hopefully in the end the site will function better, but this may take some time?

Keep those positive thoughts going and never stop believing that you can win this battle.  You are young, you tell us you have no other serious health problems and this should help you.  Even your doctors have suggested that CRT would help to give you a quality of life and there is no reason to doubt this.  Have patience and with improved EF you should notice fewer heart rhythm disturbances, particularly once healing has taken place and healing is still in progress

Gemita, I won't stop, I promise

by R2D2 - 2023-12-08 08:19:41

Again... the words of another wise person that really help this feeling of "dangling over the edge." You've been through more than I can even comprehend and yet you are so 'put together'. 

I have never really allowed myself to grieve or show much emotion over the things that deserve that respect. When I was a child, I had a dad that thought crying was rather sissy. Although in his later years, he was completely changed on that belief, long after the damage was already done. In a family of 6, I was the baby. My parents were very low income, but always did their best. But.... I grew up feeling alone, and not exactly loved. As the years went on, I married (way too soon) a guy that I clung to, insecurity was my middle name. He cheated multiple times, and our 13 year marriage ended while I sat and stuffed all my feelings away. 

Another marriage later,  and another 11 years I wanted to forget, I finally met my real self and decided I would be making better choices for myself and learning how to fulfill my own dreams and desires. I did just that. 

Two years of no dating, no men, and I felt I was ready to get back out there. In 2013 I met the love of my life, and boy did he encourage me to be everything I had always wanted. I thought I had finally "gotten there"... then in our first year came the bombshell of congestive heart failure. Long story a bit shorter, I didn't allow myself to even chew on that diagnosis,  I just sort of ignored it for the most part until it started affecting my quality of life. 

Jump to now... I think all those years of hiding my heart in the closet have brought me to a fragile place I'm fighting to keep concealed. But I get the direct impression that I need to deal with my emotional health so that I can begin to strengthen my earth suit. (That's what I call my body, because I know this life is only temporary.) 

I will get there, I just need to go through some emotional house cleaning first. And I think I'm ready for that step. 

Emotional Health

by Penguin - 2023-12-08 12:06:01

Lots of empathy and compassion on this thread for you R2D2.  I'm pleased it's helped a little. 

I can't add much, but just wanted to say that strength doesn't have to from being brave, fighting your corner and confrontation.  Sharing your fears, expressing vulnerability and asking for help and support can be very brave and strong things to do too - especially if, like me and perhaps you too, it's difficult to admit that you are frightened. 

It's OK to feel vulnerable.

Take care. 

ICD.

by Old male - 2023-12-09 16:16:37

Cardiologist 9 yrs ago told me if I get shocked "therapy", it may have just saved my life.  I've been shocked twice and thankful for the God given knowledge for the development of our devices.  

You know you're wired when...

You run like the bionic woman.

Member Quotes

I love this new part of me, and very, very thankful that this technology exists and I know that it's all only going to get better over time.