janeinbama
Pearl Clutcher
Posts: 3,201
Location: Alabama
Jan 29, 2015 16:24:49 GMT
|
Post by janeinbama on Jun 23, 2023 23:37:10 GMT
Bless you. I will be praying for a calm summer and successful procedure in August. It is scary knowing what you are facing. ((Hugs))
|
|
|
Post by don on Jun 23, 2023 23:47:35 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. I have no idea what you said, but God does, and I know how to pray and will.
|
|
|
Post by malibou on Jun 24, 2023 2:29:26 GMT
I've got you tucked up safely in my healthiest thoughts and wish your medical team complete success.
|
|
TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
Posts: 2,955
Jun 26, 2014 17:25:06 GMT
|
Post by TXMary on Jun 24, 2023 2:40:28 GMT
I’m sending you all my best thoughts and prayers.
|
|
|
Post by callmenutz on Jun 24, 2023 2:58:20 GMT
I had an ablation for SVT so I know how unnerving heart issues can be but your situation is much worse than that. You will be in my nightly prayers. 🙏🏻🙏🏻🙏🏻
|
|
|
Post by Zee on Jun 24, 2023 3:07:00 GMT
🙏❤️
|
|
peasquared
Drama Llama
Posts: 5,680
Jul 6, 2014 23:59:59 GMT
|
Post by peasquared on Jun 24, 2023 3:12:31 GMT
I’m sorry this is all happening and so scary for you! I’m keeping you close in my prayers that the wait goes quickly and is soon enough and that you have a full, uneventful recovery!
I can only imagine how this wears on you. We’re here for you always!
Big warm hugs!!
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 3:19:52 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. My license is gone for a minimum of six months, which will reset in august to another six months, I won’t want to be starting driving in a Canadian winter. Most likely next spring. Enjoy yours.
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 3:22:43 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))). You are right, so very lonely. Even people in my different heart groups that know their issues, are kind of intimidated by the multitude of different things hitting me all at once from different areas. Thank you.
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 3:26:08 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. I get your brother in many ways, I’d had four ICDs in six weeks, sepsis, septic shock, organ failure, and more and more back in 2012.. it’s hideous, and people just don’t know. Hope he is doing good now.
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 3:30:21 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 ============================================================ Prayers for you that the heart problems can be cured quickly. Thanks, it’s just so weird for the plumbing issue of the heart to be affected by the electrical side of the heart. Long qt syndrome is an inherited genetic condition, as in I was born with it, had symptoms for about 30 years prior to diagnosis. I’ll never be cured, don’t expect a cure, just need a long dull era for the heart. Lol.
|
|
|
Post by Legacy Girl on Jun 24, 2023 3:33:16 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. I get your brother in many ways, I’d had four ICDs in six weeks, sepsis, septic shock, organ failure, and more and more back in 2012.. it’s hideous, and people just don’t know. Hope he is doing good now. He is doing pretty well now. The ICD has been out for a few months without issue (it had only gone off a few times after he had it put in 10 years ago, and had not gone off since). So the risk of the infections it was causing was greater than the risk of taking it out. BTW, his EF was lower than yours at one point in this long saga, and it did rebound. Hoping the same will be true for you. Hugs and comfort, along with my continued prayers for you.
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 3:38:43 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. Thanks R. It’s been lots to go through. Without my device shocking me I’d have been dead in bed for A to find me. A horrible thought. She was in hospital holding my hand through two of the shocks, she said it was hideous to feel me go limp then scream in pain. She dropped all her volunteer projects and is devoting herself to looking after me, keeping my stress low, keeping my meds on time. It’s a lot for a young woman to take on. my boy, has autism, and he finds it hard to express his thoughts and what he is thinking. He keeps very close to me. He was laid off his job a couple weeks ago so is at lose ends. He misses a much more mobile me. Thanks so much. how have you been.
|
|
|
Post by calgaryscrapper on Jun 24, 2023 4:25:33 GMT
{{{hugs}}}
|
|
RedSquirrelUK
Drama Llama
Posts: 6,899
Location: The UK's beautiful West Country
Aug 2, 2014 13:03:45 GMT
|
Post by RedSquirrelUK on Jun 24, 2023 8:08:11 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. Thanks R. It’s been lots to go through. Without my device shocking me I’d have been dead in bed for A to find me. A horrible thought. She was in hospital holding my hand through two of the shocks, she said it was hideous to feel me go limp then scream in pain. She dropped all her volunteer projects and is devoting herself to looking after me, keeping my stress low, keeping my meds on time. It’s a lot for a young woman to take on. my boy, has autism, and he finds it hard to express his thoughts and what he is thinking. He keeps very close to me. He was laid off his job a couple weeks ago so is at lose ends. He misses a much more mobile me. Thanks so much. how have you been. It sounds awful. Horribly traumatic. A is a wonderful young lady. She has the same condition, doesn't she? I still think of them both as young teens! Me? It's 2.5 years from my breast cancer diagnosis and I'm out the other side now. I'm currently going through tests for other things. Outwardly I'm fine. You know!
|
|
theshyone
Pearl Clutcher
Posts: 3,423
Jun 26, 2014 12:50:12 GMT
|
Post by theshyone on Jun 24, 2023 8:52:19 GMT
Thanks R. It’s been lots to go through. Without my device shocking me I’d have been dead in bed for A to find me. A horrible thought. She was in hospital holding my hand through two of the shocks, she said it was hideous to feel me go limp then scream in pain. She dropped all her volunteer projects and is devoting herself to looking after me, keeping my stress low, keeping my meds on time. It’s a lot for a young woman to take on. my boy, has autism, and he finds it hard to express his thoughts and what he is thinking. He keeps very close to me. He was laid off his job a couple weeks ago so is at lose ends. He misses a much more mobile me. Thanks so much. how have you been. \ It sounds awful. Horribly traumatic. A is a wonderful young lady. She has the same condition, doesn't she? I still think of them both as young teens! Me? It's 2.5 years from my breast cancer diagnosis and I'm out the other side now. I'm currently going through tests for other things. Outwardly I'm fine. .yes A has long qt as well, she can look and know what I experience May one day happen to her. My older sister, her aunt passed of long qt in 2018. My mom and my other sister seem to be non symptomatic with it. The boy will be 20 and A 24 in July growing up every day.
|
|
|
Post by peasapie on Jun 24, 2023 9:28:39 GMT
I’m thinking of you and sending prayers that everything works out well.
|
|
|
Post by gar on Jun 24, 2023 11:47:57 GMT
That’s a lot of scary stuff - I’m sorry you’re facing so much ((hugs))
|
|
smcast
Drama Llama
Posts: 5,473
Location: MN
Member is Online
Mar 18, 2016 14:06:38 GMT
|
Post by smcast on Jun 24, 2023 12:34:52 GMT
Prayers for a stronger heart. It's hard to wait and wonder. My dad had CRT (cardiac resynchronization therapy) , a biventricular pacemaker and a defibrillator. It gave us one more year with him. I'm not saying that's your fate, just his situation. His EF was around 30% for four years and he was a tough farmer still picking rocks and caring for his farm site. He had an electrical problem too, ended up with long QT syndrome, though not inherited. Never needed to be shocked though. Hang in there, do what you can, and enjoy what you can. It's hard when we can't control things. Changing our mind sets to be grateful for what we do have really does help to enjoy our remaining life.
|
|
|
Post by mollycoddle on Jun 24, 2023 13:04:29 GMT
You have sure been through a lot. Here’s hoping that the surgery is a great success.
|
|
|
Post by auntkelly on Jun 24, 2023 14:13:27 GMT
I'm so sorry you have had so many issues with your heart. I will say prayers.
|
|
|
Post by mikklynn on Jun 24, 2023 14:13:28 GMT
I remember when you were diagnosed. I'm glad things went well for you for so long. I am praying for good things ahead for you.
|
|
|
Post by ToniW on Jun 24, 2023 14:34:32 GMT
Keeping you in my prayers
|
|
|
Post by peano on Jun 24, 2023 15:07:55 GMT
Sending out positive thoughts for good outcomes and for peace from the incredible stress you are under.
|
|
|
Post by sideways on Jun 24, 2023 15:30:21 GMT
I agree with everything elaine said. I was pretty ill for several years. It wasn’t life-threatening, but it was daily pain and trying to live life through it. I somehow came through it and got my life back, but I know it could come back.
I’m not in here much, but I just want to offer my support. Sending so much love and hugs. I wish I could translate that to cleaning your house, doing the shopping, and making some food for you. I know all of the general life stuff is so hard with health issues complicating them.
|
|
|
Post by scrapmaven on Jun 24, 2023 15:34:12 GMT
I could have written elaine's post, but w/different issues. It's so isolating and as much as we appreciate support and love, no one knows what it's truly like to live inside of a frail body. You are in my thoughts and prayers that you'll do well and this surgery will make you feel much better.
|
|
|
Post by roundtwo on Jun 24, 2023 18:43:48 GMT
I’ll never be cured, don’t expect a cure, just need a long dull era for the heart. Lol. Hoping for that long dull era to start soon!! As elaine said, it is a lonely road dealing with severe health issues but hopefully being able to release a little of the worry and stress with us helps at least a tiny bit.
|
|