theshyone
Pearl Clutcher
Posts: 3,423 
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Post by theshyone on Jun 23, 2023 18:33:56 GMT
Back in 2012 I had cardiac arrests, discovered I had a sudden arrythmia death syndrome called long qt syndrome.
I have been treated with meds and have an ICD implanted cardioverter Defibrilator, I had lots of complications from the pacemaker/defibrillator combo, ended up with sepsis, spent months fighting for my life, and ended up with a subcutaneous implanted cardioverter Defibrilator S-ICD, it doesn’t pace just shock.
it’s been ten years and about ten months I had no more issues, then on May 3, I had 7 shocks over 12 hours from my defibrillator, I was in a ventricular tachycardia storm, i had many many arrythmias that self terminated prior to needing shocked.
all of that really hurt my hearts EF ejection fraction the amount of blood your heart pumps. I went from around 55 which is pretty good to down to around 30. And it hasn’t bounced back. Long qt syndrome is typically just a screwed up electrical system in the heart, but now my pumping is messed up.
Time has been given to me. I got to see my babies become adults, my youngest graduated last June.
but I need more time. We are waiting to see if my EF bounces back and recovers some. By my extreme fatigue, nausea and a few other signs it doesn’t seem to be.
in august I’m having an operation to remove my S-ICD and place a defibrillator/pacemaker combo. It’s risky to wait that long incase I have another VT storm, but my EF needs to recover. It’s also going to be risky having a defibrillator/pacemaker combo put in as leads go directly into the heart and with my history of infections another sepsis is possible. It’ll be a big surgery and it scares me.
lots scares me right now, fear is ever present. That’s my update.
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ddly
Pearl Clutcher
Posts: 4,019
Jul 10, 2014 19:36:28 GMT
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Post by ddly on Jun 23, 2023 18:39:53 GMT
Oh my goodness! That is a lot to be dealing with! I will be keeping you in my thoughts and prayers. I hope your EF recovers!
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quiltz
Drama Llama
Posts: 6,840
Location: CANADA
Jun 29, 2014 16:13:28 GMT
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Post by quiltz on Jun 23, 2023 18:43:31 GMT
Many big hugs and may peace surround you.  I recently had a health scare and am on the other side of it. The worst part was that the ER doctor didn't wait for the specialist and he took away my driver's licence. Was I ever upset. However, that was rectified today. Yippee. Rest, look after yourself and again, hugs to you. |
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Post by compeateropeator on Jun 23, 2023 18:45:46 GMT
I am so sorry for all that you are going through. I am sending you all all my positive thoughts and hugs.
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Post by morecowbell on Jun 23, 2023 18:52:00 GMT
I'm saying prayers for calming your fears and a good recovery while you wait for your surgery. Prayers also for your medical team.
Hugs to you.
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Post by elaine on Jun 23, 2023 18:53:33 GMT
Huge huge (((hugs))).
How scary for you.
One of the things that my thyroid eye issues and my cancer and all the surgeries those involved taught me is how lonely severe medical issues can be. My husband was there for me and would do whatever I asked him to, so it wasn’t that I didn’t have him - and the peas, of course - in my corner. But there is so much time you spend in your own head thinking and worrying about your body/health and when you feel physically crappy, all the best wishes in the world can’t make it all feel better. There is part of that road that you can only walk alone.
That said, we are here for you to offer whatever support we can, including virtual (((hugs))).
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Post by mellyw on Jun 23, 2023 18:54:29 GMT
I am so sorry. I will be keeping you in my thoughts
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snyder
Pearl Clutcher
Posts: 4,293
Location: Colorado
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Post by snyder on Jun 23, 2023 19:02:47 GMT
Prayers being said for you. {{{Hugs}}}
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Post by miominmio on Jun 23, 2023 19:06:06 GMT
((Gentle hugs))
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Post by peace on Jun 23, 2023 19:27:12 GMT
now that is a lot to endure! I will send you as much excellent juju as possible and stay positive for you!!! Hugs, friend!!
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Post by stormsts on Jun 23, 2023 19:29:32 GMT
I am sorry you are having to go through all of that. Sending hugs and positive thoughts to you.
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Post by Lexica on Jun 23, 2023 19:40:11 GMT
I’m sorry that you are having to deal with so very much right now. I will be holding you in my thoughts and pray that this upcoming procedure goes well and that you are given many, many more years with your children.
The peas are here for you. I would think that someone is available on here day and night, no matter what time zone you are in, if you should need someone to talk to.
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Post by mom on Jun 23, 2023 19:52:15 GMT
I am praying for you and hope you are able to feel peace until you can have this surgery.
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Post by KikiPea on Jun 23, 2023 20:28:22 GMT
Wow, that’s a lot to handle. May God wrap His arms around you and protect you.
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Post by FrozenPea on Jun 23, 2023 20:42:37 GMT
That's a lot to go through. I will be keeping you in my thoughts. ❤️
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kate
Drama Llama
Posts: 5,583
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Jun 23, 2023 20:48:24 GMT
God bless you and grant you healing. elaine is right about complex/serious health issues - and my knowledge is only secondhand (close family). Those who have gone through it live in a slightly different world than those who haven't. I hope you get lots more years with your loved ones! |
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Post by Legacy Girl on Jun 23, 2023 20:59:46 GMT
I, too, completely concur with elaine. My brother has been through much of what you're going through. I could write a book on all of his trials with the ICD over the last 10+ years. The timing of it all makes things so unnerving -- replacing, changing the battery, removing (in his case after multiple life-threatening infections). All of that is to say that I understand how ill-at-ease you must be. I will be praying better health is just around the corner for you. |
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Post by revirdsuba99 on Jun 23, 2023 21:12:59 GMT
I remember all your difficulties from before. The peas truly are here close to 24/7.
Take care of you. Enjoy your family as best you can. Trust your medical team, let them worry. Relax and enjoy. You are tough, you can do this!!
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Post by ntsf on Jun 23, 2023 21:15:25 GMT
hugs for you and hope for all the best outcomes!!
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peabay
Prolific Pea
Posts: 9,891
Jun 25, 2014 19:50:41 GMT
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Post by peabay on Jun 23, 2023 21:16:31 GMT
Sending you my very, very best. Hang in there.
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Post by librarylady on Jun 23, 2023 21:19:09 GMT
Ejection fraction
Ejection fraction (EF) is a measurement that your physician may use to gauge how healthy your heart is. Your ejection fraction is the amount of blood that your heart pumps each time it beats. Ejection fraction is measured as a percentage of the total amount of blood in your heart that is pumped out with each heartbeat
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Prayers for you that the heart problems can be cured quickly.
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Post by lisae on Jun 23, 2023 21:26:45 GMT
I'm sorry you have had to go through with so much and still have challenges ahead. Sending hugs and wishes that the new device will reduce your symptoms and keep your heart beating for years to come. You've come through a lot of scary stuff already. You can do this!
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purplebee
Drama Llama
Posts: 6,790
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Post by purplebee on Jun 23, 2023 21:48:47 GMT
Sending prayers for healing and for a skilled medical team to care for you. Hugs….
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lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,294
Location: Scotland, Scotland, Scotland
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Post by lesley on Jun 23, 2023 21:57:04 GMT
I can hear how scared you feel, and how worried. I wish you nothing but the best possible outcome. Hang in there, remember what medical miracles are being performed around the world every day, and know that we’re always here for you.
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Post by cindytred on Jun 23, 2023 22:02:35 GMT
I will be praying for you.
Cindy
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Post by ~summer~ on Jun 23, 2023 22:15:53 GMT
I’m sorry.
Sending you hugs.
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Post by Spongemom Scrappants on Jun 23, 2023 22:39:27 GMT
It all sounds complicated and overwhelming. I understand your anxiety about it. I'm sending my best wishes that everything goes well, and your medical providers are able to provide you some stable, long-term relief.
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scrappinmama
Drama Llama
Posts: 5,019
Member is Online
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Jun 23, 2023 23:02:01 GMT
That is a lot for your to go through. I will be sending you all of the positive vibes and prayers your way!
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RedSquirrelUK
Drama Llama
Posts: 6,899
Location: The UK's beautiful West Country
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Post by RedSquirrelUK on Jun 23, 2023 23:22:37 GMT
I'm so sorry S. That's a LOT of stuff to go through. How are A and your son? Hugs and prayers from me.
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Post by AussieMeg on Jun 23, 2023 23:31:35 GMT
That sounds awful and scary, and I can understand why you say fear is ever present. I hope that you don't have another VT storm, and that the surgery, when you have it, goes without a hitch.
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