After shock, is it possible?

Hi there

by Lavender - 2023-12-10 19:46:03

Doctors do know what it's like because they hear feedback from their patients. 
 

R2D2 saved your life. It didn't progress to the grave. You are alive because of your device. Why are you so surprised it was actually needed?  I'm thinking you were not properly educated enough before the device insertion. You should have been told why the device was needed AND what it might feel like when it had to deliver therapy. Getting a shock so soon after device placement makes me think they got that ICD in there just in time to save you. 
 

Your mom can listen and venting is good. Your boyfriend can listen. But as much as they sympathize with you, they can't live in your body and feel what you felt. 

Ask your pcp tomorrow for referral to a mental health therapist who specializes in adapting to medical conditions. It doesn't have to be this hard. You may also benefit from something to calm you that works well with your condition, at least until you're able to find a place of acceptance and peace. 
 

Thursday is only a bit away. You can explain how you feel to your medical team. You're not the first patient to tell them what happened. They will know what will help you cope. 
 

Having said that...please know that how you feel and think today will change. It won't always be this way.

Thanks Lavender

by R2D2 - 2023-12-10 20:24:23

Unfortunately, all my doctors told me was that unless I got this device, I probably wouldn't survive another year. That my medications weren't helping enough, and that more than likely, my type of therapy required wouldn't even involve shocks. No one even told me what to expect or that there would be any other "issues" including pain or difficulty adjusting to the pacing. In fact, they were surprised to hear I even felt it, and that I was still experiencing pain 2 months later. They look at me like I'm a hypochondriac and just need to be medicated with anxiety drugs. 

That's part of the reason I don't get all the input I need to feel more secure, because I gave up on telling them how I feel because they think I'm over reacting. My cardiologist seems nice, but I've only seen him once since all of this started. They gave me a new doctor after several bad experiences with my last cardiologist so we haven't had a chance to build a good rapport. 

The general attitude of all my caregivers is "It's a big deal, but it's not a big deal." I'm getting mixed messages. It's like the information on getting a shock. Some say, call 911! Others say, nah... only if you get shocked again. I feel like no one ever takes me seriously. 

My life was never about going to several doctors, enduring multiple procedures, and constantly wondering what awful thing is waiting around the corner. So when people say I should be grateful because it saved my life, I'm not on the same page. I didn't want my life to be about all of this, and that's why I didn't mind the idea of "dying in my sleep" like they said. 

I used to think about other things, and now... I struggle to remain positive. I smile with my loved ones and pretend that I'm okay when clearly I'm not. Is this depression? 

Clarify

by Lavender - 2023-12-10 21:05:19

So you're saying if you knew then what you know now, you would have refused having the device inserted?  Let me say that it's too soon for thinking that. In let's say, a year, or five years, you will be saying how much you've enjoyed having this extra time. They will have figured out how to make things more stable for you.  Your mom and your boyfriend will have shared more of your life. 
 

You are here. You can't go back. The device is in you. Now what?  I know the feeling of being dismissed as being anxious. I told you before that I went through six months of sudden drop attacks, saw six specialists before they discovered my rare arrhythmia. Several of them looked at me like I was crazy. I know I was looked upon as being a nervous anxious gal. You know what, it just firmed up my resolve to be heard. Don't be intimidated. Firmly but politely state your case. 
 

Are you depressed?  It sounds like you're sad and disappointed. It sounds like you've experienced a big trauma event. It sounds like you might benefit from professional counseling.  
 

From Mayo clinic on depression:

During these episodes, symptoms occur most of the day, nearly every day and may include:

Feelings of sadness, tearfulness, emptiness or hopelessness

Angry outbursts, irritability or frustration, even over small matters

Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports

Sleep disturbances, including insomnia or sleeping too much

Tiredness and lack of energy, so even small tasks take extra effort

Reduced appetite and weight loss or increased cravings for food and weight gain

Anxiety, agitation or restlessness

Slowed thinking, speaking or body movements

Feelings of worthlessness or guilt, fixating on past failures or self-blame

Trouble thinking, concentrating, making decisions and remembering things

Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide

Unexplained physical problems, such as back pain or headaches

If this sounds familiar, please let your pcp know. Meanwhile let us know what Thursday's appointment is like. 

After shocks

by Gemita - 2023-12-10 21:10:21

Janene, I was sleeping but then my heart decided to misbehave (a rarity these days) so here I am.

From your message, I am assuming you are concerned the shock may have caused some movement of your device following your ICD discharge?  

For all of us following implant of our devices, some slight movement as we heal can be normal.  The worry of course is whether any movement is excessive and could lead to dislodgement of leads or other lead problems.  Can I ask how your heart is behaving?  Are you noticing any symptoms that might point to a problem with pacing?  If you have no noticeable symptoms, I would be reassured that your device and leads are intact and that your heart is behaving as it should. 

Your comment:  my device is no longer in the same place, it's closer to the center than it was and feels like a rock again like it did in the first month.  I'm almost to month 5 of my recovery but feel as though I'm back in month one. Not just with the device placement and pain level, but with the uncertainty part is something I would talk to your doctors about.  

I’m sensing you are concerned that your shock may have caused some movement of your device.  To reassure you, I wonder whether it would be possible to rule this out by talking to your clinic tomorrow, explaining your concerns.  They might suggest some imaging to check the position of your device and leads and have a look at your wound for any signs of wound breakdown internally.  You would notice wound breakdown on the outside if it looks as though it is opening and discharging?  That part of your concern can be eliminated by your doctors pretty quickly, so rather than stressing, I would get it checked earlier than Thursday if you feel it would help?

You have had a shock to your heart and a shock to your confidence as well.  The mental side will take a long time to heal and will be ongoing until your heart recovers with resynchronised pacing.  Your anxiety will be impacting on your physical strength and won’t be helping with any pain symptoms.  I don’t feel you are depressed, more concerned than depressed and disappointed too.  

You need to talk Janene with a professional.  I had cognitive behavioural therapy when I had cancer.  If you find a therapist you can feel safe with, it will make all the difference.  Once you get all this out in the open, it can no longer hurt you and you will slowly begin to heal both physically and psychologically.  Don’t suppress your feelings or anger.  They need to be released before any healing can take place.  We will always be here as well to support you, you can depend on that.  I will try to sleep now xx 

Gemita and Lavender

by R2D2 - 2023-12-10 21:32:55

Solid advice. Commenting on the depression aspect, I do have days in a row where I feel most of those things and nothing helps. Mostly I want to drive to a remote cabin and be alone because I feel so whiny and dramatic when I try to express myself. 

But my personality type has always been so cheerful and fun. I'm usually the life of the party (family gatherings) and quite the character. The last year has put me through my paces, with Covid, unemployment, jumping through disability hoops, rapid decline in heart function, and then finally surgery followed by c-diff and recovery. I guess I'm just tired. And running out of patience. 

I will definitely not quit fighting to be seen and heard by my doctors. I will also look into some mental health therapy.  I know I have some pretty heavy emotional baggage and my boyfriend thinks it would be helpful to vent to someone equipped to handle it. He feels pretty incapable of leading me through that maze and I can't blame him. 

You guys are awesome, again... thank you for being there. You're keeping me from bottoming out. 

When should you seek help after a Shock from your ICD?

by Gemita - 2023-12-10 22:17:29

I was always told by my doctors that if at any time I get into trouble during an arrhythmia episode (if I collapse for example or become unstable, breathless or have chest pain) I should always go to hospital for some checks.  

Listen to your body Janene.  It will tell you when you need help.  If you collapse from a shock during an arrhythmia, then in my opinion you should always go to hospital for some checks.  Better to err on the side of caution, that is the only way you will ever learn about your arrhythmias and recognise when to seek help and when you can leave well alone.  Even after a shock that doesn’t result in a loss of consciousness, this should still in my opinion be checked to make sure that the device is not shocking you “inappropriately” and that you are not suffering from any other “treatable” health condition, like electrolyte disturbances.

On Thursday, I would ask why you were shocked, what ICD therapies were given, what arrhythmia was seen, whether it was an appropriate shock for say Ventricular Tachycardia/Fibrillation or whether you received an “inappropriate" shock for an atrial tachyarrhythmia?  I always analyse things to death as well because I have a need to do so before I can come to terms with what has happened.  It is a process I have to go through

Depression or Need to Talk?

by Penguin - 2023-12-11 04:31:32

Hi Janene, 

Thanks for the update.  You've received some good advice from Gemita and Lavender who've agreed with you that a therapist may be helpful.  The clues to that advice being the right advice are your comments that imply that nobody understands how you feel and that you don't feel that you can vent to family, friends and medical staff.  I could really relate to what you said about taking yourself off somewhere, 'Mostly I want to drive to a remote cabin and be alone because I feel so whiny and dramatic when I try to express myself.'   I've felt like that before now, and I'd refer to it as 'frustration' and 'feeling alone with emotions that you can't process because they're so raw and difficult'.  Talking them through with a therapist will help you deal with the emotions driving this and give you permission to be whiny and dramatic if you need this. 

It sounds to me as if you got this device and told yourself it would all be alright now, but didn't really come to terms with the underlying diagnosis and what it meant for you.  If you're anything like me you shut that necessary process down and put the feelings in a closed box somewhere in your mind. Easier than dealing with them.  First reminder - a defib shock - and the lid's come off and those feelings are dancing around in your mind reminding you that you're alive but still vulnerable and afraid.  Nothing's changed in the way that you want things to change e.g. you're not back to normality - but you are alive.  That's the compromise that you perhaps don't want to accept - you want normality. 

As Lavender says, you will need to face up to what happens when these devices 'go off' and as Gemita says, you need to take on board what is dangerous and what you need to report.  Facing up to things can be tough when you've shut it all down and put it in a box. 

A therapist will help you open up that closed box - or deal with what's currently spewing out of it so that it feels less terrifying or so that you can face what frightens you and come to terms with what your life looks like now. 

As for anxiety meds, check for interactions with cardiac conditions!!  My own opinion is that it's better to be able to access your feelings when you see a therapist rather than having them numbed by an anti-anxiety med.  You need to 'feel' them, no matter how scary they are. 

We always say on here that the mental healing takes longer than the physical when you get a device. I don't think you've healed mentally Janene.

You're doing the right things by talking and finding a therapist. It can't do any harm. 

Best Wishes