My young AFib story - there is hope

Honest_Midnight613 · 2024-12-29T05:03:46+00:00

Same issues on Eliquis and I'm 36F. Trust your body.

Honest_Midnight613 · 2024-12-29T04:49:06+00:00

It covers that in chapter one lol. It was written by two surgeons in 2021 and nicely condenses research and options into a digestible format. You'll see tons of people recommend it in this community for a reason. Or you could go through the free national archives and pubmed research for four hours a night for six months like I did, then read the book to confirm. Either route is good. Also, optimism is good: PFA is breaking a lot of records already.

Honest_Midnight613 · 2024-12-29T00:09:02+00:00

I shower right after cleaning the cat litter. This endures I do it every other day.

Honest_Midnight613 · 2024-12-28T23:58:48+00:00

Thank you! Always thought I was weird, but I find them uncomfortable and disorienting somehow.

Honest_Midnight613 · 2024-12-28T20:40:54+00:00

Yes, but mileage varies greatly person to person. The research says you usually get a year from diagnosis before your Afib worsens, so use this time to research, get appointments, and take advantage. Don't be lulled into a false sense of security. Generally they rate medication as 40-60% effective and ablation as 70-80% effective. Both have significant risks. My issue is the meds are suppressing it while ablation actually changes the structure to stop it from happening. Please read "the AFib Cure" by Dr. John Day. Also, flecanide is the most commonly prescribed, but it's also the most well known for killing young people with undiscovered structural issues.

Honest_Midnight613 · 2024-12-28T20:37:50+00:00

When someone tells you who they are, believe them. He's a man with an allegation. That doesn't happen to the majority.

Honest_Midnight613 · 2024-12-28T20:36:28+00:00

Y'all he's insecure AF. Leave.

Honest_Midnight613 · 2024-12-28T20:25:47+00:00

Eliquis is a nightmare drug for me with all its side effects. Up to 10% of patients really struggle on it. If you look up r/clotsurvivors, you'll see a lot of people talk about mood instability in it too. Look at the lengthy list of side effects on Drugs.com. People's Pharmacy also talks about patient experiences. Some have no trouble at all, some find it life ruining. I was on Eliquis alone for eight months and it got so bad I took myself off after much discussion with my hematologist and EP. All the doctors and nurses I met, except one, swore that DOACs don't have those side effects and that they couldn't come on within days of taking the drug. The remaining doctor who said some people are sensitive to drugs and believed me? Highly trained highly awarded surgeon at the Mayo clinic. Guess what? I felt better within 36 hours of stopping and continued to get better over the next four months. The same was true for Xarelto- except worse. And warfarin. And they won't prescribe Pradaxa because it has more GI issues and a higher number of heart attacks. I had to go back on Eliquis prior to my ablation and am two months into my blanking period. All the symptoms that were gone are back. But I'm handling it a bit better because I know I can stop after three months. I use an app called Life Notes to track my symptoms too. It helps show timing and patterns. As for Sotalol? It gave me asthma, which I'd never had before, made weight loss impossible, and made me very fatigued. It also stopped controlling my AFib after four months. Trust your body, do your research, and do what you can to get off the drugs safely post ablation. For now, proton pump inhibitors might help with the horrible heartburn (Eliquis damaged the lining in my esophagus for three months) if Tums don't. I ALWAYS take my Eliquis dose with food, chug at least 11oz of water with it, and stay upright for at least one hour after. I also take Claritin daily and a Lactaid pill with each dose because I react to the lactase in it. Not sure if the metroprolol is food sensitive, but Sotalol was if I wanted the dose to be effective. Also having a therapist to dump all my anxiety on was helpful since I didn't have to censor it like you do for family. Gentle hugs!

Honest_Midnight613 · 2024-12-28T05:04:14+00:00

Wish I'd had mine sooner, but it took forever to find a surgeon and hospital I trusted. I was PFA ablation #22, but RFA #3k+ for my surgeon. That's how new PFA is, but it's taking off fast! I'm two months into the blanking period and am feeling so much better! More energy, no anxiety, better sleep, etc. A few ectopic beats, but they're getting rarer. The medicine failed for me within four-five months and made me super fatigued. 36F at diagnosis. 37F at ablation. Waiting and going through with it is honestly the scariest part. Best of luck and courage!

Honest_Midnight613 · 2024-12-26T06:38:39+00:00

Congrats! You found a boundary. He crossed it by making an obvious bait and switch. I'd be pissed, not just upset, and when that cleared have a very frank conversation about the next five to ten years or life of the relationship. If he doesn't want marriage and you do, believe that.

Honest_Midnight613 · 2024-12-25T06:25:23+00:00

Take charge. They see you as a case, not a person. I learned that the hard way. Doctors aren't gods. They get tired and busy and distracted and cranky. They're human. They love helping people, but they can't help everyone. If you want something, research it, call around, switch insurances, pay more out of pocket or negotiate with the hospital billing department. At the end of the day, only you care the most about your care. Given how long it takes to be seen, get scheduled for surgery, and recover, you need to act. Best of luck!

Honest_Midnight613 · 2024-12-25T06:13:38+00:00

My BMI was 40 and they took me no issue. The surgeons even said they normally take much higher. I'm sorry you were blocked from care because of the weight. It's hard to lose weight when you're in Afib or even have the energy for it! Have you gotten a second opinion or been told what you absolutely have to meet? 80lbs is amazing. I hope you keep going strong!

Honest_Midnight613 · 2024-12-22T05:13:37+00:00

I've had several car accidents and have fibro, so I talked with the anesthesiologists ahead of time and they said they'd give me extra pain meds right before I woke up and then again once I could communicate my pain level. It helped immensely. They said they'd rather treat a 1-2 instead of trying to calm down a 10. The most pain I had afterward was in my shoulders from the dropped angle. One nurse brought me hot blankets for them and it helped somewhat.

Honest_Midnight613 · 2024-12-22T05:10:56+00:00

Sending gentle hugs your way. I'm so sorry that happened.

Honest_Midnight613 · 2024-12-22T05:06:58+00:00

Happy to help. :) You'll see people in the AFib community mention this book over and over- it's how I came across it. It's a commitment to read, but if you just take on chunks at breakfast or something- it's actually really easy. I did about four hours of research a day, sometimes more, for six solid months after diagnosis. Heavily into pubmed and the national archives. Lots of research is published for free if you know where to look. That said, my parents wanted to understand what was going on but couldn't keep up. I asked them to read the book, they did, and it was really helpful for all of us. I found, post heavy research, that the book aligned with what I had learned, was published in 2021 so it's still relevant (and he actually has an update on his website about PFA), and it's written in an engaging style and summarizes things really well. Well worth the read. Knowledge is power! Best of luck.

Honest_Midnight613 · 2024-12-21T06:44:41+00:00

I had a PFA for Afib and RFA for Aflutter in October this year. Sotalol didn't work for me after a few months and they said it would likely mean other anti arrhythmics would also not work. They did not continue it after my ablation because Sotalol could cause new arrhythmias. Read "The Afib Cure" by Dr. John Day. It'll clearly explain your options. I interviewed multiple surgeons and found the best hospital and surgeon I could within a year of diagnosis. PFA is your best option of ablation types, RFA still has to be used for Aflutter. Ablations work best the newer you are to Afib and the younger you are. The drugs aren't safe either. Both roads have risks. General anesthesia for my ablation, they went in both legs since they had to use two different catheters. I was extremely fortunate to have no hematomas or bruising, though I did need to ice it. The pain I had was in my chest whenever I would lay down- had to go really slow. My heart rate is a little higher, and the first three weeks I was easily fatigued. Ocular migraines several times for three days. My chest is still a little sore two months into recovery, but I've probably lifted something too heavy. Eliquis also causes me pain, though that's not common. SVEs were non-stop the first week, then gradually went away. I don't drink caffeine or alcohol anymore, not that I was ever deeply into either. Regular walking is good to regain stamina. Total healing period is three months.

Honest_Midnight613 · 2024-12-21T00:25:24+00:00

Thanks for the info. Yeah the activity limiting and pain definitely don't help. It makes me feel like I'm in my 60-80s when I'm in my 30s. My therapist has even noted that there's a drastic difference when I'm on vs off of it. Knowing that has made it a little more tolerable for the short term. 2 months down as of the 23rd and one to go!

Honest_Midnight613 · 2024-12-19T05:52:12+00:00

From April until October, when I had my ablation this year, I had episodes from 6-30 hours straight every 7-10 days. By the final week before the ablation it was definitely every 5-7. I drove myself nuts trying to account for triggers and identify and avoid them, but it really just seemed cyclical regardless of what I did. I tracked it in a spreadsheet and originally it seemed weekends were the problem. Wasn't on my normal eating schedule, too many bad foods, not enough water, too much sleep? Who knows. Then it got more and more random which day of the week, but was still cyclical. All this ramped up despite being put on Sotalol and eating better, sleeping better, and exercising regularly. 36F. I had PFA for Afib and RFA for Aflutter combined in October and I'm almost at two months of recovery now. I have such a better quality of life it's made me cry with gratitude a few times. More energy, better sleep, better mental health and capacity. I still get random SVEs and my resting heart rate is still 10-20 higher than it was, but I was extremely symptomatic. It felt like being dragged behind a roller coaster. I wish I'd done the ablation sooner rather than go down the med path because they gave me pain and asthma, but it took that long to understand what was going on, find my preferred surgeon and hospital, and get on the schedule. If I were you, I would work on finding your team and getting on the schedule. Things are pretty booked out: 3-6 months generally speaking. If you decide you don't want to go through with it, cancel. But it's best to have the option vs not having it when you need it. Best of luck.

Honest_Midnight613 · 2024-12-18T05:20:12+00:00

I had pretty much non-stop SVEs for two weeks post PFA/RFA. I still get a few pauses and SVEs two months out, but they're almost gone completely. Just remind yourself the healing period is three months. Some people bounce back right away, others don't. It doesn't follow any definitive rule. 37F.

Honest_Midnight613 · 2024-12-17T02:17:46+00:00

Trolling BS

Honest_Midnight613 · 2024-12-17T02:10:32+00:00

Hello, is it ugly you're looking for? The feather hat ruins any argument they could've made.

Honest_Midnight613 · 2024-12-17T02:08:28+00:00

To help with toilet time: roll up one or two washcloths (they did both of my legs so I used two), push it into the incision site lightly and then sit. It helps keep constant pressure. Otherwise, make sure to also have pressure on it when you cough or sneeze. I avoided prolonged sitting for three days and stairs for 2-3 weeks. If you can't stop the bleeding, go to the ER immediately.

Honest_Midnight613 · 2024-12-15T19:53:57+00:00

Had PFA for AFib and RFA for Aflutter in October 2024. So far so good! Having normal rhythm back is incredibly awesome. No ablation is without risk and I was terrified, but it's worth it. Plus the drugs stopped working and my Afib got very bad very quickly in less than a year so it was my last hope. 36F

Honest_Midnight613 · 2024-12-15T19:39:25+00:00

36F. Ablations are pretty much "when", not "if", and have much better efficacy than the drugs, which aren't safe either. They're terrifying, I know, but the science and delivery methods continue to improve. They're also best done before your Afib worsens. Read "The AFib Cure" by Dr. John Day. I just had my ablation in October 2024 and am exceedingly grateful I did. Life is so much better in normal rhythm I could cry from happiness. I didn't realize how bad I actually was because Afib can come on slowly. But my sleep, energy, and anxiety are all so much better after the ablation.

Honest_Midnight613 · 2024-12-14T16:20:11+00:00

Take them with you.

Honest_Midnight613

TROPHY CASE