Very doubtful

So I've had my icd for a little over 4 years now and I just recently decided to have it turned off, it still monitors my heart but will no longer provide life saving therapy if my heart rate gets too high. I was still living in fear every day of being shocked (after being shocked 10 times in less than 3 years) which was not living to me. I'm 38, I've already had my living and last wills drawn up as well as a MPOA. I don't feel like things have gotten any better in the last 4 years in fact I feel my symptoms more often than not and more than I was.

I have finally decided to give the whole ablation bs a chance and talked it over with my family. I told them I would give it a try but under certain conditions.... I will only do the ablation one time, I will turn my device back on after (seeing how if it works I shouldn't ever get shocked again) but if it so happens that I ever do get shocked again then I will have the icd not just turned off but removed. If this ablation doesn't work they have to let me be done with all of this and just live my life for however long I end up having left. It's exhausting worrying abt this every day and trying to keep fighting or trying new things that just don't work or done give the outcome that is hoped for.

I believe in quality over quantity when it comes to my life and me staying around longer but miserable, depressed and wishing for death every day is a worse fate for me than being able to finally live life to the fullest without fear and be able to enjoy things again. As it stands with everything that this damn heart failure took from me I literally have no will to live. My kids get to see that every day which isn't fair to them. The reason I held off on the ablation for so long was because my heart doctors already told me that they think it might take more than one ablation and they aren't even sure if it will help anything since we don't know what even caused all this to begin with, I've had heart problems since I was 18 and don't know what even started them only what made them worse and appear to where we even found out I had heart problems.

I'm only doing the ablation now so that I can say I did and I for when things go bad nobody in my family can say that I didn't at least try everything I could,but I'm very doubtful that it's going to help anything or help enough for me to feel any differently abt living this pathetic excuse for a life. I'm just done, and I feel completely done and over it with every fiber of my being. In all honestly I kind of hope I'm that very small percent that has complications during the procedure and doesn't survive just so that I can finally be free from it all. I know that hearing that from a 38 year old sets people off and I'm sorry abt that and I've heard it from so many friends and family more than you know. But my age apparently doesn't really matter when it comes to the quality of the life I am supposed to be fighting to stay alive for and this life has no quality for me anymore and never really will again, not the way I want anyways.

Would have been much easier if when my heart rate was 285 for 30 min I just hadn't survived from it bc then I wouldn't have had to deal with all this or fall into a deeper depression than I was already in. I sorry if anything I said offends anyone, I just needed to get it out and it seems to fall on deaf ears when I try to explain it to my family sometimes. 

5 Comments

It may just make a difference

by Gemita - 2024-09-10 18:42:01

Pixee,  you have not offended.  You have written from the heart.  I think you have been incredibly brave to unload your thoughts on an open forum.  Sometimes by acknowledging openly what we feel, can help the process of healing.  Burying/suppressing our thoughts is never helpful but it takes courage to admit that we may have a problem.

I cannot imagine how difficult it must be to anxiously wait for the next ICD shock to happen.  I think you have been incredibly brave to have coped so well.  Heart failure is a cruel cruel disease.  I hope your doctors are able to offer support for both your physical and emotional symptoms to help improve your quality of life. 

An ablation may just help control your arrhythmias which should then help reduce the number of ICD shocks you receive. I hope that your first and only ablation will bring you some peace and respite from your arrhythmias.   As an arrhythmia sufferer I know only too well how much disturbances of rhythm can adversely affect quality of life.  My life was never the same after I developed arrhythmias although my pacemaker has helped me to live a better life.

You clearly have more serious rhythm disturbances than I, so I feel an ablation for you is well worth a try.  It may just make a difference.   Please take care and never give up hope

Hugs

by Lavender - 2024-09-10 20:32:30

I see that you posted two years ago with similar comments. Then you were advised to have a ablation but had no insurance. Now hopefully you have insurance and can move forward with trying this out. Your son is now four? You have another child?

It's your body and you're the one who ultimately must make decisions on the care route. I'm hoping your bipolar is being treated with meds that don't bother you, so your mood can be more even. 

I want to be here for my sons and grandchildren. I plan on doing everything I can to stay here.
However, I have no idea of what it feels like to get a shock. Some people say it's not so bad. Some are traumatized and fearful of future shocks. Only you can define how it affects you. 
 

Get the ablation asap so you're not agonizing too long over facing that.  May God send relief and peace about your life path decisions. Hugs🦋

Don't Lose Hope

by SeenBetterDays - 2024-09-11 08:40:12

Pixee, I'm so sorry you are feeling so low at the moment.  It is really good that you are being open and honest about how you feel. The depression that you are experiencing is completely understandable given all that you have been through.  I can only imagine the stress and fear of waiting for a shock to happen and how incredibly difficult that must be to deal with from a psychological perspective.  

I am not in your shoes but I have experienced the desperation to escape health problems and the physical and mental exhaustion which accompanies what feels like a daily battle at times.  Please remember you are still young and have family who love and care for you and need you to remain in their lives.  I know that you may not be optimistic about the ablation but there is always a possibility that treatments and therapies can improve your situation.  It has to be worth a try and to give yourself the best possible chance.  I agree that quality of life rather than duration is the key but it may be that there is a way to get this back, if not at the level you previously experienced, to a level that allows you to get some elements of joy in your life.

Please don't give up hope.  I will be thinking of you and rooting for you.  I deeply hope that your procedure goes well and gives you positive results and relief from your symptoms.

I can imagine

by piglet22 - 2024-09-11 10:17:53

Yes, it must be psychologically draining.

Short of being under observation all the time, your device will give you the best chance.

I had a nerve conduction test once and said never again. At least it was only my arm, but I didn't know what was coming.

Your clinical team will know what's best for you and they work to give you the best outcome. They have access to a worldwide knowledhe base to work with.

If they think that an ablation would offer the best outcome and perhaps relieve you of the current stress, I think that if I were in your shoes, I would give it a shot.

There might be a lot to gain.

Best wishes

".... it might take more than one ablation...."

by sgmfish - 2024-09-11 17:40:50

I don't know if this will help or not, but......

I think ablations are not to be feared. I've had 2 ablations in the last 2 years, and doctors say I will likely need a 3rd, and maybe even a 4th. FWIW, the 2 ablations I had each caused me less anxiety and pain than having a crown replaced by a dentist. It's pretty simple: you lay down (often with a nice warmed blanket over you), they put you out via the IV they will put in your arm, you wake up feeling groggy but with little pain or anything else negative. That same night you are sleeping in your own bed.

I *do* relate to how disappointed I get (sometimes even depressed) because I get my hopes up that THIS procedure is going to do the trick, only to start feeling poorly again in a few months. I haven't hit a wall about these disappointments YET, but I can easily understand that I might down the road.

You know you're wired when...

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