I think I need to talk to people who experienced the same thing

Not Alone

by taywal93 - 2021-07-13 10:34:14

Hi Avishi,

I got my pacemaker 6 days ago - I am 28 years old. I am going through much of the same thoughts and feelings as you are. I used to live a spontaneous/active/busy lifestyle and since the surgery I am not sure how I will ever get back to that. I have been trying to take it day by day and become deeper in my faith. I wish you nothing but the best. You are NOT alone. 

I hope more of the young-uns will chime in

by Julros - 2021-07-13 22:18:50

I am older than you, but I know there are members here who have had pacers since they were babies, as well as teens and young adults. And they healed and live their lives. This will happen for you too. 

A busy, active life is possible. Press your provider office for optimal adjustments to make sure that is not holding you back. At my age (early 60s) I took up jogging, which I used to loathe, and now I look forward to it. And you will find me on my bike a couple of times a week. My provder office seemed amused that I demanded fine tuning, but I will optimize what this fance chunk of hardware can do, and you should too. 

Hope to give some solace

by chrysotile - 2021-07-14 05:12:50

There's a handful of us Millenial and Gen Z folks in the PM club, some of us are just as new. I'm 30 and am a month out from my implant surgery, other than some occasional pain when I move my left arm up too high or feeling like there's a knot in my left upper pec, I'm about as back to normal as I was before my symptoms came on back in December. Two of the ppl I talked to about their pacemaker experiences before getting mine both live fairly active lives, one's a 32 y/o who got his first just over a decade ago and the other is 26 and had their first PM implanted at age 4.

For whatever its worth it sounds like this isn't really an uncommon thing for really athletic ppl to need after awhile, and from looking through others' stories most can get right back into what they were doing once they recover from surgery. If you think it's holding you back in some way, maybe it's a problem with its programming, which a discussion with your EP might solve. The recovery can be very unnerving tho, between just getting used to it, grappling with hyperawareness of your heart or trying to see if you "feel" the leads gets to you.

If I'm interpreting your stories correctly, avishi and taywal93, both of you kind of had your PMs implanted pretty suddenly, which had to have been more than a little traumatic. My mind drifts to the same thing I thought the day my cardiologist told me I might need a PM: "I'm young, I'm not *supposed* to need a pacemaker, that's an old people thing!" Which for most ppl our age is accurate, but there are always exceptions to the rule, and that's us. It's just a part of being human, everyone's bodies are unique in their own ways. I can totally understand having that thrown at you suddenly would leave you feeling fairly rough even 4 years on, we all process our traumas at different paces.

In that respect I guess I was kind of spoiled by the delay between completing my heart monitor study, getting a sleep study done to rule out OSA, and concluding I'd need a PM which all took the better part of 3 months. That gave me at least some time to reflect and process everything. I worked thru the initial stages of grief where my view went from "that can't be right!" to " Well if I need this to live a full life and knock my chances of dying in my sleep down a peg or two, cut me open doc!" What matters is, we're here and we get a chance to live our lives to the fullest.

The aftermath

by Persephone - 2021-07-14 16:03:58

Chrysotile - thank you for sharing your wisdom.  I'm twice as old and wish I could perceive half as much as you :).  If it weren't for this forum, I don't know where I'd be... I know people going through cancer treatments who have fairly ready access to social workers, etc to help them on their way.  I feel like I was essentially put on the street (well, a family member picked me up) the day after the implant surgery and told "bye-bye, go out and live your best life and don't fret about the trauma you just went through or the forever change to your body" :(

Access to mental health care

by Persephone - 2021-07-15 10:50:35

I neglected to add that I am fortunate enough to have access to mental health care so I took advantage of that, found it extremely helpful, and would recommend it for anybody who is dealing with a life-changing event.  My comments were about the kind of broken health care system that we seem to have where people with PMs, for example, aren't expected to need care for the emotional side. Maybe others had more positive experiences with their health care systems and received more holistic care. I know that I can't just complain about the issue and need to try to work to change things if I expect them to change.

Persephone

by Gemita - 2021-07-15 11:40:18

Dear Persephone, thank you for your last comment.  I was very fortunate with my cardiology team because they immediately referred me for talking therapy with a Mindfulness Consultant in the same hospital.  He was formerly an A&E consultant and he had seen everything.  At first I was a bit put out, thinking they thought all my problems were of my own making or due to anxiety and at first I fought with all my might the referral.  I didn't want to be labelled with anxiety and then not receive adequate care with the pacemaker or for my electrical disturbances.  I imagined if they labelled me with anxiety, they would try to treat the anxiety, rather than the arrhythmia, but I needn't have worried. . .

My Mindfulness consultant was very special and I was able to speak freely with him and unload many of my fears.  He did all the investigations he felt were necessary to reassure me (and him) that we weren't missing anything.  He accepted I had electrical heart disturbances which sometimes caused syncope, but he also told me that I sometimes had neurally mediated "situational and vasovagal syncope", both of which could not be prevented by a pacemaker, but that there was a lot I could do to help myself.  He taught me many techniques and mindfulness exercises.  I spent two years under his care and I cried when I had to say goodbye and move on, and so did he.  He told me I had taught him a great deal too.  It is wonderful when you find someone special to work with and I am grateful to my cardiology team for the referral now.

I hope all is well your end and you are getting some answers.

Gemita

Wow!

by Persephone - 2021-07-15 12:24:34

Gemita - you've probably shared this background here before and I unfortunately missed it, but your story is very inspiring and I hope helps many others who come after us. Definitely makes me feel more empowered to advocate for what I need. Thank you.