Just venting I guess

I've had an ICD for almost 2 years. Went down with VTAC and survived because I collapsed in front of a hospital. Life after has been better than I expected but I wish there was someone in my surroundings to talk to, someone who also went through something similar. I'm not very old for such a device and so there isn't anyone with the same experience. Not that you can really put words to what you go through.

I feel fairly safe with the meds and the device, but for some reason a difficult thing for me is knowing all that machinery is in my chest. You can clearly feel the leads under my skin and that's just bizarre. Strangely enough I wish there was a large visible scar because I feel different and I live differently but people treat you as if nothing is wrong. Not that I want to be treated in a different way but for some strange reason acknowledgment that things are different now is important to me.

2 Comments

I empathise with your feelings

by Mapleshaz - 2017-10-31 02:19:45

You have expressed feelings, emotions that I have felt. I had a year to consider whether I wanted a CRTD and during that time longed for someone to feel what I felt. I thought my life was over but no one seemed concerned about me. And that hurt. 😢 Their attitude was like Get on with it! I cried buckets and felt so alone. My coping strategies tend to border on the comic, being the life and soul of the party, making light of it then going home and collapsing in a heap. So you can see the state I was in.....how could my friends and family even know how to treat me when I couldn’t figure it out myself.

Then I made the decision to go ahead with the device.....reluctantly! Not for me, but for my children, my granddaughter, my friends and my partner. How would I feel if they were given a chance to life and turned it down?  I met my Arrhythmia nurse for a routine two hour meeting where she explained just about everything and answered every question I had. I got invited to join the support group (my first meeting will be in January) but THE BIGGEST HELP was finding this site. I have read hundreds of comments, and I no longer feel The Odd One Out. Here are people who KNOW how I feel. And guess what? Since my own attitude deep within has changed, so has that of my friends. They no longer see a needy me but a brave me, and I like that. 😲

May i suggest a few things.....find a support group, ask your doctor to put you in touch with someone who has a device, try some talking therapy. The person you meet does not have to have been through the EXACT same experience as you so long as they have felt or understand the EMOTIONS you are feeling, a feeling of loss, fear, why me, doesn’t anybody care or understand, etc. You Will find a friend near you, of that I am sure but in the meantime, work on accepting the new you and take pride in being able to pass on your possitiveness to the next person. Sharing is the ultimate. Have you read the book, “Johnathan Livingston Seagull”? ❤️

Ps..... I am having my first CRTD implant in 24 hours!!! 😮 😮 😮 

Good Luck!!!

by FingerPaint - 2017-10-31 07:29:19

Hoi there,

Thank you for your kind words, it helped me a lot! Glad to see there are more people out there like me. Best of luck with your implant, I'm sure you will do great. I was very surprised how smooth and comfortable the procedure was. I will have to read jonathan livingston seagull, strange that I hadn't heard about it before since I go through books as if they are cupcakes :)

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