Newly Implanted

Hello all! I'm glad I found this site. I've been all over the place with my new ICD. I was implanted a week ago and a week after I had V-tach and the doctors could not figure out why and had to transfer me to another hospital with an mri team that could do one on my heart. I was told before my mri that I had a right branch block and after it they diagnosed me with myocarditis and significant left ventricle damage. I begged to not get the device but the EP doctor said there was no other option for me. I am a truck driver and only 44 years old and just started a great job six months ago. I cried a lot in the hospital and because of my occupation,  they decided to be definite about needing the ICD. They still don't have a clear cut reason as to how I ended up with myocarditis. I asked a few doctors if it could be from the covid vaccines. I've had 3. They don't really know. 

On the 10th I was at work and had to crank up the trailer legs I hooked up to. They were very stubborn and difficult and really gave me a workout. After I sat back down in my truck my heart started racing at 243 bpm. I called my boss then 911 and they got to me in about 5 minutes. It took them 30 minutes to get my heart back to a normal pattern again. The doctor told me almost everyone in that situation dies. So I am grateful to be alive. The paramedics gave me two different medications that didn't work then shocked me and then it settled down. I was awake for the whole thing and they said my blood pressure was normal through all of it. 

All of this still has me in a state of shock. I'm not really sure what I'm going to do with my life, what kind of quality of life I will have. The damage to my left ventricle sounds pretty bad. I read my mri results. I'm still on an anti arrhythmia drug for one more week I think and it scares me to go off of it. It feels like a safety net right now. They put me on a lot of meds that I'm learning how to take and it's pretty intimidating but I am getting used to it and I got a pill organizer for my morning pills when I have to take 6.

How does everyone else handle something like this? I have read some posts from others who are newly implanted and I'm glad to have you all here too. Not about our devices for sure but the feeling that I'm not alone. No one in my life can really empathize. I will never be able to do a job that I love ever again. I'm afraid to have coffee. I've had some palpations after a cup and for eating too much yesterday. I'm scared after getting shocked and want to run away from all this insanity! I'm also a now former smoker and did smoke a couple after I got released from the hospital and sent me to the emergency room. I feel crazy and a mess and my boyfriend called me a self pittier for crying all day the one day.

Sorry I'm writing a book but I really need this release. Thank you for reading this messy thing and words from a crazy lady. You all are a blessing and I'm beyond grateful to have found this place!   

              Cassie


7 Comments

I"m so sorry

by Tracey_E - 2023-01-25 08:17:24

You've had a lot to adjust to!! Sadly, CDL is on the short list of things we can't do. Could you move into something supervisory in the trucking industry? 

Give yourself time to grieve, to learn about your condition, to adjust to your new reality. It's ok if you're not ok right away. Counseling may help, you've got more to adjust to than most in the same medical situation. Don't be afraid to ask for help. 

There is an organization called Mended Hearts you may want to look up. It's support for cardiac patients, given by cardiac patients. 

Your boyfriend is completely out of line. You're dealing with a surgery, a scary medical event, a change of career, and nicotine withdrawal. He'd cry too if faced with all of that. If he's adding to your stress rather than supporting you through it, a step back may be best for you. 

Many of us have had to switch to decaf. Drives me crazy that I watch people drink a full pot, but half a cup sets me off. 

The ICD was not optional. Don't waste energy stressing over if it was the right decision. It was. It's normal to be afraid of another shock. However, you're now on meds to prevent it, and you know coffee and nicotine set it off. You're doing everything you can to minimize the odds of it happening again. Try to take comfort in the fact that if it does happen again, your odds of survival are a lot higher, not dependent on someone figuring out what's happening and acting quickly. You've got a built in safety net.

Welcome to the club no one wants to join. Feel free to ask questions, vent, whatever you need. You are absolutely not alone. 

It will get better

by Gemita - 2023-01-25 09:03:48

Cassie, welcome to the Pacemaker Club.  

I am so sorry to hear about your diagnosis and need for an ICD.  You have had so much going on and I am not surprised that you feel the way you do although being an optimist I don't see why you will not be able to return to a more normal way of life once you are over the acute phase of your illness;   yes even with an ICD.  Many ICD members are able to enjoy a quality of life once their arrhythmias are better controlled or their health condition which led to the need for an ICD has been stabilised and why shouldn’t it be the same for you too?

The ICD was implanted to protect you from a dangerous ventricular arrhythmia like Ventricular Tachycardia.  You have also been given anti arrhythmic medication to help calm your arrhythmias.  If your doctors can stop your arrhythmias, or better control your heart rate when arrhythmias occur, this will help prevent an unnecessary shock, so that sounds as though you are on the right track.  

As to what caused your myocarditis, perhaps we will never know, and I don’t really want to speculate.  Myocarditis can affect anyone and is a disease that causes inflammation of the heart muscle.  This inflammation enlarges and weakens the heart, creates scar tissue and forces it to work harder to circulate blood and oxygen throughout the body.  You now have an ICD to protect you, to keep you safe, while you try to slowly rebuild your life.

I attach a helpful link from the Myocarditis Foundation if you want to read more about Myocarditis:-

https://www.myocarditisfoundation.org/about-myocarditis/

Let us hope that your condition can be effectively treated by your medical team.  It may take a few months before you start to feel better, depending on the cause and how well your body responds to treatment.  You may unfortunately get palpitations until your heart inflammation settles but with good medical care I am confident that things will improve for you.  Be kind to yourself as you heal.  I wish you all the very best

I'd cry too

by Gotrhythm - 2023-01-25 13:57:30

If I had to give up a job that was a whole way of life--that I loved. Plus deal with a diagnosis that also demands letting go of comforting habits like coffee and smoking. Yikes!

Everybody understands and expects grief when we've lost a loved one. As you are finding out, grief also happens when we've lost our life, even though we are still alive.

Go give yourself space to grieve. Be gentle with yourself.

Also be aware that both smoking and caffiene affect mood. You are used to having their help to get through life. When you stop them, your whole nervous system has to go through a readjustment. And one of the affects of stopping nicotine and caffeine could be that you feel more "down" and cry more easily. You have not one, not two, but three reasons to feel your emotions are out of control. It reallly might be appropriate to talk to your PCP and ask for a short course of antidepressant or anti anxiety meds.

Grieve as much and as long as you need to. There is no timetable that I know of. And there is no way out of grief except to go through it. Everything you do to make it go away, to make yourself not feel it, will just make it last longer. No one can take the burden of grief from you but there are those who will happily walk beside you and share the burden. A counselor and/or support group can help immensely.

My (pacemaker assisted) heart goes out to you.

Thank you all!

by SassieCassie - 2023-01-25 15:10:02

It really helps, all of your kind words. It's very comforting to me. Thank you all very much! This is all going to take time but having a good support group I think will help a lot. 

Compassion

by Lavender - 2023-01-25 15:52:35

Hope your boyfriend grows his compassion bone. Sounds like it's underdeveloped. He's got no clue what you're going through! I know some folks think it's ok to be stern and tell others to muster up! But, honestly, you need some TLC. 

Being that you're from Monroeville, I am thinking you got some good care at the excellent hospitals of the 'burgh! 
 

You need to give up coffee and smokes. I really miss coffee but haven't smoked in decades. I still sniff BFs coffee now and then and love the smell but my heart doesn't need charged up!

You are very young. You don't know yet what job will be the one you love most. Truckin is only the one you love most SO FAR. God will open doors and light the way. Your future is changing but you still have a future😘

Thank you lavender!

by SassieCassie - 2023-01-25 17:04:52

πŸ’“πŸ’“πŸ’“πŸ’“πŸ’“πŸ’“πŸ₯°πŸ₯°πŸ₯°!!!

Not Alone

by SeenBetterDays - 2023-01-27 12:43:10

Hi Cassie

You have been through a traumatic experience so completely understandable you feel your life has been turned upside down. I totally relate to what you said about others not understanding, it can be a lonely place after the implant but the great thing about this site is that we all understand and you are absolutely not alone. We all have different stories and situations but we all feel for each other because it's likely we've all had to adjust to a new life and many of us go through a grieving process. Give yourself time and I hope that the people around you will give you the love and compassion you need at this point. I'm thinking of you and hoping that your recovery goes smoothly. 

 

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The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.