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Rbrandt

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Ablation could possibly make me a millionare, if I live through this. During my procedure, I was sent instructions as to what pills (52 a day of RX and OTC) to STOP taking a week before the "event". I am a diabetic II heart patient who had an AFIB heart attack in 05. While going through the horror of yearly insurance enrollment, I had to deal with uninformed "temp employees" that wanted to sign me up (even scam me) for things that would have taken all of my rtirement money just to stay alive. You guessed it. The sheer frustration gave me another AFIB heart attack in Nov of 2015 as my reward for finding out the truth and properly signing up. My attacks don't just happen and go away. They STAY until cardioverted with the electric paddles. Then I'm on the same pills I've taken for decades to prevent it (hopefully) from happening again. But NO! The instructions were INACCURATE. I used to take INVOKANA. It's fairly new but that's no excuse. They left it OFF the list of what I was supposed to stop taking for a week prior, simply because someone behind a desk did not know what it was. It almost killed me. INVOKANA puts excess sugar into your urine that the Metformin and other diabetic drugs miss. You simply pass it and have a "love your numbers" experience. For 2 years, it was like I was actually CURED. But an Ablation is a 5 1/2 hour procedure that requires a catheter (spelling?) be run up inside you for this procedure. Nowhere in the literature from Janssen Pharma is the danger of a cath stated. They simply say "risk of urinary infection", nothing more. Why? Money. A doc who has a diabetic heart patient might not prescribe their expensive meds (can't have THAT can we?). People like that have a tendency to get procedures. In the recovery room the young nurse came in and asked "Why do you have so much sugar in your urine?" I proudly told her that I had very good coverage and they pay for INVOKANA. I had to describe what it was and what it did as she'd never heard of it. She put her hand over her mouth and said "Oh my GOD!" and ran from the room. What? I was discharged and three dyas later was sitting at the urologist's. It burned when I peed. I was told that yes, I had a bad infection due to this "Medical Mistake" but he could not give me Cipro to fix it. Cipro can cause heart arrythmia. Ablation is to cure the same thing. I could "lose" my whole reason for the procedure and go back into AFIB! So, I was givwn an ineffective sulfa based (I think) drug and for the next week I literally screamed into the toilet as it got worse. On the 9th night I awoke at 2 a.m. in REAL PAIN. It looked like someone had hidden a small grapefruit under my PJ's. "Honey, get me to the ER right NOW! A burst bladded will kill you inside of 30 minutes. It is NOT a pleasant death. The ER put in a cath and out gushed 2000 ml of infected urine, more than a human is supposed to hold. The attendant said I was either well informed or very lucky. I would have burst within minutes, according to him. He taped a bag to my leg and sent me limping home with a cath. Now what trained doctor does not know what heat, bacteria, sugar and urine create? I wore the painful bag for a month as the meds did nothing. I had to turn the spigot and empty it every 90 minutes. Try getting a good night's sleep in that situation! After a month, we rolled the dice and tried Cipro. It worked perfectly. Out came that awful catheter. Then, it got really bad. They discovered I have Multiple Meyloma Cancer. But not to worry. He could keep me alive for 8 to 12 years. It is treated with pills and an infusion of Zometa every 90 days. The Revilmid-Dexamethasone pills threw me straight into AFIB within a week during my first 21 day cycle. During the 7 day "rest period", they cardioverted me again. The next day, I resumed the pills. Within a week I was again in AFIB! Again, with the cardioversion and recovery. The doc changed the Dex dose to once a week instead of the customary first four days then halting it. I STILL got AFIB! The cardiologist did not want to shock me again as this was going nowhere fast. The cancer doctor has a new plan with different drugs. BUT he wants me to be Ablated first, recovered and my heart strong enough to take his meds. The cardio guy does not communicate with him as he's in a different medical "group" who don't share information. I have one primary and 9 specialists who "don't talk to eachother". I have to carry a satchel with medical records, discs and my meds, a blood cuff and diabetes test kit. If they want me out of their office during my "ten minutes of fame" an office visit grants me, they are amazed when I have just what they asked for right there in my bag. You have to FIGHT to be your own advocate with these HMO's. They don't like it when an educated person comes in and tells them their job. They really don't like it to be reminded that they are legally liable for Medical Mistakes that almost kill the patient.Ask all the right questions before the procedure. Ask about infection and review your whole drug list. Now, I'm still in AFIB, the doctors are at crossed swords and I really don't know if I'll see those 8 to 12 years if my heart stops within a month over the meds.
  • Posted Wed 12 Apr 2017 11:14 AM CDT
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Hi I am new to this site I have been taking tikosyn and metoprolol now for 6 yrs warfarin had good results but my dr wanted me to wear a monitor because I had 2 a fib episodes now he is thinking I should possibly have an ablation. I'm a little hesitant but would love  to get off my medication. I would love to hear from people about their experience with ablation. Thanks
  • Posted Wed 22 Feb 2017 08:45 PM CST
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  Thank you for the friend request - I got diagnosed by my GP January 16th, when I went in to see why I was having so much trouble breathing and getting so tired just walking in from a parking lot.He set me up with a Cardio that specialized in electrocardio ... blah, blah.
  I had my first appt with him on January 25th, and he rather quickly explained what a-fib was - told me the tests I had to take (ECG, Stress, Ultra Sound of me carotid arteries) - and the ones he wanted me to take (sleep study, calcium something, a deeper version of the Ultra Sound. My second appt is February 28th, and I have no idea what that appt might entail.
  Just like it says on one of the home page links on our site - there's a lot of contradictory information available. I'm interested to see what course of action my Cardio has in mind - one of the comments he made during the first appt was 'you know you can live A-fib, we just have to keep the heart rate down'.
  Sorry for rambling during my comment to accept your FR, I'm just a little freaked thinking about being tired and winded the rest of my life.
  Again, thanks for reaching out to me
Jay
  • Posted Sun 19 Feb 2017 05:24 PM CST
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thank you for your answer,,,and im so so sorry to hear of all your issues and i pray for you that you will find healing and health and soon. i wish this afib thing wasnt happening to us all.
  • Posted Tue 14 Feb 2017 04:17 PM CST
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how do you control your afib if you dont take metoporlol and how can you take asthma meds with afib, doesnt that make the heart race?
  • Posted Mon 13 Feb 2017 09:49 AM CST
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Hi Cookieis 

I have had asthma and high blood pressure since I was in my early 40's.  For a long time my asthma really only flared up with aerobic exercise. So I have been on Diltiazem Er 180 mg fjor blood pressure since early 1990's and a albuterol inhaler as needed. Over years my Blood pressure even on Diltiazem usually was 140/90 something (not great) pulse of 100 or less at the best. By early 2000's Advair was added in for my asthma. Bp and pulse remained at the borderline level. When my Afib hit they added the Metoprolol very low dose to lower my Bp and pulse primarily because they tried to chemically convert me but it didn't work.  When the low dose of Metoprolol didn't make any difference it was increased and then it interfered with my inhalers and I had very bad breathing problems. So i was taken off the Metoprolol and put one Lisinopril hctz 10-12.5 in addition to the Diltiazem. That combo has reduced my bp to 120/80 all the way down to sometime 95/60 after a walk and my resting pulse rate is average about 65. During exersise like walking it goes up to 120 to 130 on hills or into a brisk wind. The above mentioned med changes occured while i was in constant afib.  Eliquis was also added at the start of it all. Now before the lisinopril was added and while i was still on the Metoprolol i had a elctro conversion but it last 10 whole days. So after the removal of Metoprolol we took a rhythm treatment approach instead of a rate treatment approach and that meant Flecainide was added and then 10 days later I had a second electro conversion which took 4 attempts but I converted to nsr and have stayed there for a year now. In the last couple of monrhs my average pulse rate while awake seems to be increasing slowly but kind of steadily. My EP told me before starting the second conversion attempt that i had an ablation in my future so I suspect the Flecainide is probably starting to reach its limit of effectiveness t holding me in nsr, at times if feel little things in my chest but nothing shows on any of my devices but makes me suspect that it's probably only a matter of time before my Afib returns full bore. When that happens then I'm pretty sure  an ablation will be my next step. So the real short answer (way to late now right) is that Flecainide is controlling my Afib for now.  

May we all have NSR 

Roy. 

(Myafibexperience community leader) 
  • Posted Mon 13 Feb 2017 12:24 PM CST
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Rbrandt, Thank you for responding to my question about medication side effects. Your comments confirm my thoughts and I will be seeing my cardiologist on Wednesday to discuss this. I have been on these meds for two months with some changes. I will let you know how I do.

I am still feeling my way around this site and wonder if there is a way to reply to your post from the main page. To get here I clicked on your name and left this comment. Any help will be appreciated. Afibber
  • Posted Tue 24 Jan 2017 08:14 AM CST
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Thank you for the friend request. I am still learning this format. Excited to be here.

Paulee
  • Posted Mon 16 Jan 2017 06:53 AM CST
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