Hate having ICD

I'm 35 and had to get an ICD in May of 2020. I had 3 heart attacks at age 19, 2 Bell's palsy attacks at 18 & 19, a heart infection in 2017 and then found out I have heart failure when I was pregnant with my son in 2019. I have been shocked 4 times as of yesterday and they even changed my settings a week or two ago so that hopefully it wouldn't happen again or at least give me more of a heads up that it was about to happen. I hate this thing so much, I never feared my heart before and yet now that's all I have is fear. I can't play with my son because I can't breathe after 2 min of minimal play time with him and if I play too much I'm afraid I will get shocked again because I have a fast heart rate naturally. I know this device is keeping me alive but that is all it is doing, I'm no longer living life. I don't do anything because I'm afraid to exert myself at all. I have been sitting at home only leaving the house when I have to since Nov of 2019. I don't want a transplant and honestly I don't want this device anymore. I would rather enjoy whatever time I have rather than be miserable and afraid for the rest of it. I have no insurance and my EP wants to do an ablation now when he originally said that he didn't think that would work or anything and told my cardiologist that he wanted to do the ICD instead. I am so depressed and nobody understands. Everyone just keeps telling me to be happy and why am I so depressed, my fiancé keeps telling me that he can't handle my depression much longer so I need to just accept that this is my life now and be happy so he can be happy too. I don't know what to do other than cry myself to sleep every night or when I am alone during the day and my son is napping. Sorry just needed to vent a little bit 


7 Comments

hi

by Tracey_E - 2021-10-23 22:27:12

I'm so sorry you are struggling. Dealing with serious life threatening issues at a young age is hard. Vent all you need. 

Have you talked to a professional or considered anti-depressants? At the risk of being too blunt, you sound depressed and like you have PTSD. There are people who can help you talk through the feelings. There are medications that can take the edge off. Sometimes being tough isn't enough. Your son needs you. If not for yourself, get some help for his sake. 

I'm no doctor, but if your natural rate is high enough to regularly set off the ICD, it sounds like ablation might help. Worst case, it doesn't. Not much to lose, imo. If it were me, I'd at least look into it. 

I hope you can soon see the light at the end of the tunnel, that you have a lot ot live for. 

Thank you

by Pixee86 - 2021-10-23 22:57:22

Thanks I'm trying to look into finding someone to talk to, it's just hard with no insurance, haven't worked in 2 years and because I'm so easily exhausted because of my heart I can't work, state denied me benefits so I currently have an attorney trying to fight for me to get disability so I can start seeing my doctors again. It's just been one thing after another these last 4 years and it's been really hard for me. My EP is waiting to see if I get approved disability so we can schedule the ablation I'm just hoping that by that time he won't tell me that it won't help anymore or something. I am also trying to do an inpatient program if I can find a way to afford it or have help paying for it because I think that is the only thing that might help. I was diagnosed bipolar at 14 but meds made it worse back then and haven't been back to see a dr for medication again since then. But depression has always had a big role in my life and I can usually manage it fine but this is pushing me over the edge and I'm scared. I really do appreciate your kind words and to know that there is somewhere I can go and people I can talk to that are going through something similar and understand. 

Gosh

by doublehorn48 - 2021-10-23 23:34:45

You've had some real problems.  Nobody can blame you for being depressed.  I really admire you.  You keep fighting through your problems.  Tracey gave you some good advice.  Even in Texas your attorney should be able to help you.  You have a lot of courage and you are certainly due some good news.  I have to think good things are going to happen.

Best wishes 

Hugs

by Julros - 2021-10-24 03:38:41

My dear, you have had to endure more than you deserve and my heart goes out to you. This isn't fair that someone as young as you should be going through this. Yes, as Tracey wrote, you can safely vent here. 

You are making some positive steps by having an attorney pursue your disabilty. Please reconsider a transplant. A very dear friend of mine had one so that he could see his son grow up. I could hardly believe the change it made in his life. 

Yes, I hope you can talk to a professional soon. There are such better treatments now for bipolar and you deserve to adequate treatment. 

Best wishes. 

Even in Texas

by AgentX86 - 2021-10-24 10:31:54

SSI is a federal program, administered by the Social Security administration. It has nothing to do with where you live.

As with many (read: all) government programs it's run very poorly. The first application is almost always rejected out of hand. You do need a lawyer to push ithe application through the appeals process. My DIL has MS and hasn't been able to work for a year and a half. She finally got a lawyer, who's services will eventually be paid by the government. It's what he does. This is probably means tested bit I don't know how it works.

If you can't afford doctor's care, assistance is available. Search it out, though some of the programs are state run.

hang in there

by athena123 - 2021-10-24 14:54:03

To have all that going on for you and having a child my heart goes out for you. Look at some local churches who have pastors that could possibly help you and may guide you in the right direction with your depression. I hope you get the right care for your heart and its a shame that people who really need the care that its not there for them. I hate this beaucracy that governs us. Peoples health should not be for profit. Keep strong and hopefully you will get the proper help you deserve. 

Happy tears

by Pixee86 - 2021-10-28 16:30:15

Thank you all so much, I am trying as hard as I can to keep fighting, it's just really hard to do so sometimes. Y'all are all so kind with your words and I greatly appreciate them and being able to talk without being made to feel like I'm stupid for feeling the things I feel or having to try and argue my point to someone who doesn't know or understand and just competes with me abt how this is affecting them. My cardiologist office called me two days ago and wants me to up one of my medications and says when they see me next month they will do an ultrasound and if something isn't right I guess that they want me to go somewhere else to get help. The problem is that where they want me to go is the hospital that my grandfather had to go to for his cancer and I don't think I am ready for that. Hell if they want to see what happens when I get anxious and stressed I guess that is one way to do it. But I'm trying to take it day by day right now and I've been talking a lot with my mom and am gonna start making some plans just in case. Again thank you all and I will keep writing on here and keep y'all updated when I get a chance. 

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

Member Quotes

I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.