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Steve - this is my story
This is my story. I’m a 46-year old male, pretty overweight but not morbidly obese according to me. Diagnosed with AFIB in October 2015 when I was admitted to the hospital with an erratic heartbeat. I think I had AFIB for 1-year prior to that so let’s call it October 2014. I had stopped taking my pretty weak BP meds earlier that year that I’m sure contributed along with my lifestyle and alcoholism. I was a runner my entire life until my late 20s when my career and starting a family got in the way.
AFIB treatment began in October 2015. In the hospital they gave me a Cardioversion but didn’t work. I bounced in/out of AFIB for about 1-year. Sinus lasted longer each time. Dr put me on Flecanide to try and extend Sinus but it didn’t. I lost approx. 30 lbs and added muscle – in/out of being a gym rat weight but my loss didn’t seem have an impact on my AFIB. Drank alcohol infrequently, but binges approx. 4 times a year – heavy. AFIB usually came back after heavy alcohol use, but would go away. Bit I tinkered with what the AFIB triggers and was no consistent rhyme or reason. But that has stopped and I’m now in consistent or persistent AFIB Flutter. Yes, I have AFIB Flutter. Very minimal alcohol now and I ‘ve kept off the 30lb weight loss, but could lose at least another 30-50 lbs. Drugs are keeping my heart rate in the 70s and 80s.
Drug regimen changed over time – currently on Valsartan for BP, Sotalol and Eliquis. I’ve gone on/off bloodthinners but currently on at Dr’s insistence. They recently added Diltiazem but I swear it was causing suicidal thoughts so they pulled me off for now. Next appt in June, they may propose a new regimen.
Oct 2015 Cardioversion – didn’t work
Nov 2017 Cardioversion – worked for 1 week
April 2018 Cardioversion – worked for 2 weeks
May 2018 Echo Cardiogram
My main cardiologist has now referred me to the electrical cardiologist and a Thoracic Surgeon to perform a Convergent Ablation which seems to have more success than the basic ablation that is also performed, basically 2 procedures. I’ve met with both of them. I’m in the Scripps heath system in San Diego. Said they’ve done approx. 10-15 procedures, 70% effective. I’ve just begun my research and main concerns are the balance of success/risk but really just terrified . I read stories on here and most seem to be unsuccessful but maybe that’s what I’m predisposed to remember. I thought I would introduce myself here so that I could begin to interact. Open to any comments/suggestions.
Nice to meet you,
Heartfe6878, June 7, 2018 4:57pm EST
Dr. Natale comes to Scripps Clinic once a month for 2 days. He is the top of the heap in EP nationwide and know how to handle complicated cases. I think he does 400 surgeries a year. 10-12 is not very many. You really want someone with the most experience with your heart and greatest sucess rates... He is in your back yard so to speak. I would sure check him out. I think he is there around the 12th of June this year. Do not know if they have anymore openings...Worth a try tho.. I have a personal friend who is on staff at Scripps who was also recommended as a following doctor if you deceide you want to investigate your power of choice....The best doc usally get the best results.
Spencer, June 7, 2018 5:09pm EST
Steve - Glad that you found this resource. I came here in Oct of last year, and since then I have two cardioversions and three ablations. You know, one more ablation and I get a free set of steak knives and half off a full-service cardioversion. I have not heard of the ablation that you are writing about, but then again I am in military medicine, and I am lucky that they only use a round rock to knock me out before operating on me instead of the pointy ones they used last year. I hear that civilians have stuff called anesthesia... Need to check that out sometime.
If you think that they are just sort of trying stuff out on you in hopes of making you better - they are. It sounds terrible, but each of us is very different, and we react to differently to their procedures, drugs, and potions. My last EP was sacrificing small mammals in my general direction and shaking some large stick over my head. My AFib was very symptomatic, and I have had a rough time... but then again, I like it rough and generally you have pay extra for that. I can help you get ready for the ablation if you want. It is a straightforward procedure, and there is nearly zero pain with the recovery. Have you had surgery before? I know that I came to my first surgery very unprepared and was rather disoriented. I wish I knew then what I know now. It sounds like you have a good team and you are going to get some really good treatment from them. I'd listen to them and seek some advice on the procedure. There are many on this board that are far more knowledgeable than I am.
Not sure I answered all your questions. So if you have any more, please shoot a reply to this. Generally, I am too crazy to give advice, and you might do better to do exactly the opposite of everything I say. On the crazy... I got the t-shirt from that hospital stay, but that is another story.
Welcome to the board and may the NSR be ever in your favor.
Waiting for my Sunrise.
SteveSteve, June 7, 2018 5:34pm EST
Great thanks Heartfe6868 - I know the procedure is new, but 10-12 seemed low to me as well. called, referral in process as he has openings next week. fingers crossed. Thank you so much.
Hey Spencer - I've followed your story so I'm glad to see you back on here. I've grown to love my afib despite its mortality - I feel better when i have ADIB it as I guess Ive gotten used to the symptoms. Weird right? I seem to struggle mentally above everything else so this surgery or procedure? will be like a vist to hell - at least that's how i feel right now. I havent agreed to it yet, so i'm not getting into too many details/questions but i will when that happens. Happy to see that there are good people on here. Appreciate the reach out.
Jeanamo815, June 7, 2018 9:52pm EST
Welcome to the forum, Steve...I can understand your concerns and think I would want someone with more experience than 10-15 procedures. Getting a consultation with Dr. Natale as Heartfe6878 suggested would certainly be something you may want to consider. He is an expert in the field and may have some options for you after he evaluates your case. In the field of electrophysiology, he is definitely one of the best. It would be worthwhile for you to explore the idea of how you can get an appointment with him when he is in California. We are glad you have posted in our forum and hope you will continue to let us know how you are doing.
Wishing you the best,
(My A-fib Experience Community Leader)
ShellyH, June 8, 2018 10:00am EST
I'm here to confirm that you should not be terrified of an ablation. Having had four (2005, 2015, June 2017, January 2018), the toughest parts were short term: lying in recovery not permitted to move my legs for six hours, long term: the itchiness of prepped regions growing back. My frequent flyer award consists of an assortment of different colored hospital socks. Speaking of "crazy", I told the nurse I already had blue, tan, and red socks. She exclaimed, "Red? Those are given only to psych patients." Either they ran out of the other colors last year or they were trying to tell me something.
SteveSteve, June 8, 2018 2:39pm EST
Consultation scheduled with Dr. Natale next Tuesday, June 12th. Big shout out to Heartfe6878 for the suggestion and the supporting words from Spencer, Jeanamo815 and ShellyH.
I'll let you all know how it goes.
Spencer, June 8, 2018 3:19pm EST
ShellyH - On the socks... they always give me the yellow ones. In my hospital, the yellow denotes a fall risk. I am dizzy often and especially after all the drugs they give you while you are under the anesthesia. You also get this nifty magnet attached to the wall right outside your room. Interesting when I was checked into the Nut Ward that they gave me the yellow socks straight away. I did steal the magnet from my room in the nut ward... it is now on my fridge to remind me of my many varied and wondrous experiences at the hands of military medicine and the psych ward.
Will need to a post about the check-in process for the Psych Ward. It was a bit different...
Now... certified crazy
Jeanamo815, June 8, 2018 5:06pm EST
Steve...I am so happy you have a consultation with Dr. Natale. You can feel confident that you will be seeing the "best" of the "best" in electrophysiology. It is fortunate that he will be in your area and that you were able to get an early appointment. I hope it goes well for you and that you will let us know afterwards.
As to all the socks comments....those of you who got different colored socks are lucky. All the socks in my hospital that I have ever received have been a dull beige and they never have the right size available...so I usually end up with an XL that comes up almost to my knees! For fall risks we wear yellow or orange bracelets...no special socks. Sure don't get to be a "fashionista" here...unless you bring your own.
Edhammer, June 8, 2018 5:54pm EST
Golly, sure wish I had some red ones! Just the blue ones and yellow ones. And beige?!? I thought my blue and yellow ones were kinda boring....
Heartfe6878, June 8, 2018 11:22pm EST
I am so very pleased that you are seeing Dr. Natale.....I am eager to hear what you think when you see him and about the whole process at Scripps. I had looked at him at his Austin, TX location and had seen this reference to the Scripps Clinic mentioned casually. I had wondered if he had been there at one time and was no longer there. I had called there and they said that they had expected him for his next appointment on June 12th....I guess this information was for you! Because I ended up in another hospital on another matter and am working on this matter first before pursusing a Natale appointment. I love it when life works this way...By the way in CA the red socks are for the extreme fall risks.....and the beige ones were for the wobbley ones that I guess they thought I was.....However, the beige ones did not fit this time...I should send them to Jeano.. they were so small....I too seem to be collecting a drawer full of different colors. Each hospital must have different rules for their socks. Looking forward to hearing all about your visit to Scripps.