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Rbrandt

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Hi, when I joined the forum last week I posted a question asking if anyone else had side effects from blood thinners. I have not seen the post or any responses. Did I do something wrong? Please advise. Thank you!
  • Posted Wed 20 Sep 2017 07:15 AM CDT
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Hi Roy.  Great story.  Glad you came out of it in great shape.  Hope your knee area heals quickly and NSR remains with you always.   Bob
  • Posted Thu 24 Aug 2017 07:53 AM CDT
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Hello ~ My username is "Jake's mom" because I am just that, Jake's mom. We lost our Jake, age 24, two weeks ago due to a complication from his second ablation. We are devastated, so very devastated. I am looking to connect with others who may have lost someone from ablation complications, too. 

If you know of a way way to contact families such as our's please let me know. 

Thank you,
Jake's mom 
  • Posted Mon 14 Aug 2017 10:30 PM CDT
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Hi, I am so very sorry to hear about your son, I can not even begin to comprehend what it would be like if it happened to either of my children.  My son-law has congestive heart failure and that's more than I want to deal with.  I admire you reaching out. I dont have any suggestions other than I am sure that if you dont mind posting your question to one of our community forums if any of our members have any suggestions or experiences they would certainly respond.  You could also contact Melliane True Hills she's she founder of this site and CEO of Stop Afib.org.  I think she would know of any organizations i any exist. 

Best of everything to you and stay strong. 

May we all have NSR 

Roy.  

(Myafibexperience community leader) 
  • Posted Tue 15 Aug 2017 08:47 PM CDT
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I just had my second Ablation in 12 months. This one took 7 1/2 hours to "clear all the scar tissue away". I was two miserable days in hospital recovering. I have heard of a lot of people having multiple procedres but never because of excess scar tissue. I was just diagnosed with Multiple Meyloma and it's Revlimid -Dexamethasone therapy gave me AFIB 4 times (with cardioversions) in 90 days. They had to stop the cancer treatments until this last ablation on Monday. A new canceer med will be used. What do you think caused all the scar tissue?
  • Posted Sun 25 Jun 2017 04:17 AM CDT
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My quick story. My wife passed in 1/2015 after a long bout of Lung Cancer. I was her caregiver for 15 months. We had been married for 50 years. In a couple months I began to have a really bad time with breathing, tiredness, dizzeyness and in general just lousy. My BP got so low that I ended up in the ER. Never forget the nurse that hooked me up to monitor said"Oh you have A-Fib". She didn't mean anything by telling me just a reaction. I ask my cardiologist why and we talked about many reasons and one was possibly a broken heart. I was put on meds which one was Savaysa a new blood thinner. I hated it as I was treating nose bleeds almost 3 times a week. My heart was skipping as many as 2 beats of every 10. I lived horribly until I was told I should have an Ablation. I also had Fludder which caused more problems. Well I had it on 2/11/2016. The normal 6 hours in my heart and home the next day. I can end this real quick by saying A-Fib and Futter is gone and I am off the Savaysa and back on Plavix which I was on prior. No episodes and feel OK for a 73 yr old man. Knock on wood. Happy to be friends and happy to find this site.
 
  • Posted Tue 20 Jun 2017 10:04 AM CDT
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I've been in and out of AF for several years with 5, I think, cardioversions.  In March I had a convergent hybrid ablation and since then I've felt overall much better and have been able to return to work P/T which is what I was doing before.  I wouldn't be where I am if I didn't have such a good cardiologist and a God who answers prayers  :  )  My somewhat invasive ablation--EP went to interior of atrium through right and left groin and the cardiothoracic surgeon made incision over bottom of breast bone, broke of small useless bone at bottom and went to work on back of heart-went well and when I woke up I was in my room.  There wasn't even much pain.  All I needed was 2 pain pills a day.  It was so worth it!!  I haven't felt this good in years.  I never took all those expensive drugs--just sotalol and warfarin--for the several years I was in and out of AFib.  I still have to take them but my heart rate and BP are much more normal and shortness of breath is almost gone.  I still have some rheumatiod arthritis but even by labs are better now!   You do have to have a doctor you trust who comes well recommended!
  • Posted Sat 20 May 2017 11:38 AM CDT
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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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Tullia, 8-25-17

I have not looked at this site for a couple months as a lot has gone on and I did not want to depress myself. That can kill you too. The same doctor did the 2nd ablation, unfortunately. He completely ignored my "allergy list" and a pleading letter handed to him just before I was wheeled in to "roll the dice" again.He almost killed me with a deadly urinary infection due to a clerical error the last time AND I got a terrible 22 hour long headache out of it. 7 1/2 hours on the table is no party. I awoke in recovery, again with my lovely wife by my side. A nurse came in with a syrenge. "That better not be Morphine. It makes me have a terrible migrane headache." She replied, "Oh, its just a shot, not a full drip." as she stuck it into the port. "NOOOOOOO!" I cried as the pushed in the plunger. My eyes locked foreward and like a bullet to the forhead, there began a hideous 30 HOUR HEADACHE. It was so bad I was afraid to move my eyes as I stared at the wall. My wife was apopletic with worry. My back hurt so bad from that 7 1/2 hours on the table, I was ringing for the nurse at Scripps Cardio Unit in La Jolla trying to get REAL pain meds for some relief. They ignored my "allergy list" once again and brought me Generic Percocet, which ALSO gives me a headache. (any pain med with "325" in its name will do this to me) So the pain in my head was "doubled down", the back ache was exactly the same and I lay there in renewed agony. What could I do? I was desperately ill, the nurses started to ignore my calls. I thought I would have a stroke. I began to keep a log of when I hit the call button and how many HOURS it took them to get to me. Once, on my third hour of pain and waiting, I simply undid the leads, an alarm went off and they came running, thinking I was dead. I held up up the notepad and barely able to speak, asked WHY? I looked at the time and wrote it down, The I showed it to them. They could see I was DOCUMENTING them.  I was given another Percocet, the headache became blindingly worse, and I asked for the HEAD NURSE. When she did not come, I said I would like to be discharged and taken by ambulance to the hospital near my home where I would be treated properly. She came. She angrilly folded her arms, looked at me like at 16 year old drug addict and was quite rude in accented, frowning Filipino. She had to give me what the incompetent doctor ordered. I said "It's midnight. I've been waiting for this time of day. Get on the phone and get the doctor OUT OF BED. I want a Demerol shot so I don't have to lay here and suffer." She repiled "We haven't used Demerol in years.  (too expensive I found out later.) Where did you hear that name, in the street? WHAT? How INSULTING.....! I raised my gown and showed her a 15 year old ragged scar from a hernia repair. "They gave me Morphiene and when it gave me a headache, they told me I was allergic to it, took it away and gave me a shot of Demerol and all was well. Why can't YOU do that?" I again asked that they get the doctor on the phone for a shot of Demerol to ease my pain. Two HOURS later came another "Headache Percocet" and a reply from the doctor that he does not give shots for Ablations! WHAT did they give me 20 hours ago, a poke in thje eye? I had silent tears rolling down my cheeks. My back was so painful as was my chest, I found myself holding my breath to reduce the stabbs of pain I could just not tolerate. Then I remembered. I had my diabetes kit with me right there in my bag. In it were my neuropathy pain meds "(Hydrocodone BITARTRATE/ Acetomenaphen 10-300)" When the next pill came, I refused it. I asked that my "allergy list" have Percocet formally placed on it and sent her away. There. They could NOT give it to me again. Now here, I have to say "Do Not try this at home, kids!" I have a lot of experience in this. Most doctors are competent enough and caring enough to want to HELP their patients. Again DON'T DO THIS! I was desrepare, tear faced and needed help where none was forthcoming. Hipocrates said 2,000 years ago, "Patient, heal thy SELF!" I grasped the computer monitor (with its camera on top) and turned it away. I dug in my bag and took my personal pain medication. Then replaced the monitor. After all, I was due for a pain med. Mine were less powerful and did not make me sick. For the second time in 15 years, I had to "save myself" from a blinding headache. An hour later, the sun came up. No sleep at all. Two hours later a collegue of the doctor came in and relaesed me. Then when my one pill wore off, I was in agony again. Tears flowed as I stoically held my breath on and off as the only relief I could have. It took them 6 hours to actually relaese me. The nurses "found" a pill of Oxycodone of the weakest strength. It is just Percocet WITHOUT the binders and acetomephen that trigger headaches in me. I was told they cannot discharge a patient in a wheelchair with tears rolling down his face in such pain as it would "look bad", so they actually treated my pain properly. Once home I contacted my Pain Management Doctor, (the one we all have to get with the new, poorly managed laws) I sent my wife for the hard copy and she filled the prescription. Only then, after two agonizing days, was I given relief. I'm told that your Pain Management doctor can "weigh in" during a surgery and demand the proper meds to control your pain. The next time we will do this. I'm told this doctor averages THREE attempts on ablations. I was given the name of a doctor at that hospital who can complete it in only ONE. I'll get him if needed next time. I see the man who would not help me again on the 31st of Auugust. After I fire him, I'll re-start my cancer meds and hope my heart can take it. Then I'll begin waiting for an appointment with the most sought after electrophysologist in Southern California. I'm sure he'll take better care of me. My advice: Set up pain contol with your pain management doctor BEFORE the surgery. Keep a record of how slowly the nurses respond to your calls. (That one item made a BIG difference). Last, fill out the post-operation report form and leave nothing out.

  • Posted Fri 25 Aug 2017 01:47 PM CDT
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Hello Mr Don!....Having just read the above -dated 12th April 2017- makes me realise that `
out there´ exist a lot of brave, suffering people like yourself who set an example to us all...and realising what you must contend with does rather put my own personal health problems on one side as I take heart and learn from your example of fortitude...Thinking of you and wishing you well! ...tullia
  • Posted Mon 26 Jun 2017 03:17 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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