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Heart Rhythm Conditions – Welcome to the group
Welcome to the Heart Rhythm Conditions group on Mayo Clinic Connect.
Did you know that the average heart beats 100,000 times a day? Millions of people live with heart rhythm problems (heart arrhythmias) which occur when the electrical impulses that coordinate heartbeats don't work properly. Let's connect with each other; we can share stories and learn about coping with the challenges, and living well with abnormal heart rhythms. I invite you to follow the group. Simply click the +FOLLOW icon on the group landing page.
I'm Kanaaz (@kanaazpereira), and I'm the moderator of this group. When you post to this group, chances are you'll also be greeted by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.
Let's chat. Why not start by introducing yourself?
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Hi. I am 65 and was born with tetralogy of fallot which was repaired at age 5. I had my first VT episode at age 40 and have had an ICD since then. After years of relatively stable heart health I am now facing a ventricular ablation due to a recent increase in VT episodes and a switch to a dual chamber ICD. I am nervous and re-learning about all this.
You're very welcome.
Martin wow thanks for the information...not what I was lead to believe...I will be discussing all this soon with my doctor...being on blood thinners for me is creepy and I want off of them....thanks for the links. Very helpful.
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1 ReactionThat is amazing! I like your advice. Thanks.
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1 ReactionMary @mklapperich, when my anticoagulation went through the roof last summer, I looked for blood from my intestine and from my kidneys and bladder. Only a little blood showed up in my urine for a couple of days. By then, my anticoagulation factor from Warfarin was back in line and has stayed there every since. As long as I check my Warfarin level every month (and I don't find any leaks at home), I feel confident staying with Warfarin, as an old friend has done for the last 10 years.
My latest check on antidotes confirms that no antidote (reversal agent) has been approved yet for Eliquis (see https://www.drugs.com/pro/eliquis.html#s-43685-7 reviewed in July 2018). An antidote for Xarelto was FDA-approved in May 2018 and is expected to be on the market in 2019 (see https://www.drugwatch.com/xarelto/). Until then . . .
Martin
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1 Reactionmrk4445 @mklapperich
My cardiologist wanted me to get a pacemaker as my heart rate is very low at night after I go to sleep (drops momentarily to as low as 38 and then rebounds). My boss at work told me I'd have to retire after that due to the EMFs in the area are high as the shop where I work is a repair and overhaul shop for aircraft rotating electrical aircraft parts.
Finally after 3+ years my doc is ok with NOT trying to goad me into a pacemaker, as to quote him during a recent visit "you're probably the healthiest patient I'll see today." I recently got asked to a luncheon (really a fund raiser for funding Fellows at the cardiology department) and when asked the realistic picture of how this would help me with my particular situation when I can manage 15,000 steps in a day, the woman on the other end of the phone audibly gasped. She then responded with perhaps this would not be a good luncheon for you to attend.
My advise to all of us heart patients is to keep moving even if all you can to do today is 200 steps, try to get 225 tomorrow. Movement is the best thing for human bodies, sitting for long periods does the human body no good.
Aspirin and blood donations is, for me, the best regimen to follow for keeping my blood thinned out. Also, do not forget to drink adequate fluids, not just water, daily as getting dehydrated can damage your heart.
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2 ReactionsHhhhmmmmm...I was now told there is antidote for eliquis... might have to check that out again. No matter how low your risk is they will recommend blood thinners. I have been of the understanding that blood thinners also can cause stomach/intestinal bleeding also. My father in law passed away from a gut bleed caused by warfrin. Before my ablation I went off warfrin to a baby aspirin a day...with test of time and stability of my heart I will probably return to aspirin for as long as my risk factor is low. No it's not recommend by my doctor. But it is a choice as a patient that I get to make after weighing risk and benefits to how it affects my life. Blood thinner raises the risk of riding on motorcycle...bad deal...raises risk of injury at my job and has altered my responsibilities...bad deal...want my job back. Having a stroke bad deal...risk I am willing to take while my stroke risk is low...to keep my life as I know it for as long as possible. It's complicated. And there is no guarantee. Taking a blood thinner long term is probably in my future...as these drug also can serious side effects i wish to prolong thier use as long as possible. It's a risk either way...life for us will never be the same again...we make our decisions based on what we feel will give us the best quality o
f life. I have learned that quality of life means different things to different people. Some people are more willing to take greater risk to maintain a certain quality of life for as long as possible. That is the beauty of educating yourself about your condition then you can make reasonable decisions about your own treatment based on risk, benefits and quality of life. I have found the input of people on this forum to be very helpful.😊
Hi Mary @mklapperich. So glad you could share this information with us on your adventure with A-fib. It adds another layer of confidence that you and your medical team are on the path to long-term stabilization, and still another layer is likely to show up in your 6-month checkup. In my case, A-fib has not been so threatening. My symptoms are modest and relatively easy to deal with -- no racing heart rate and no ventricular reaction to the irregular atrial contractions. Two friends had ablations about two years ago, and they say they're glad they did and they are doing well.
My medication regimen may be instrumental in my case -- Carvedilol and Warfarin instead of Flecainide and Eliquis. I'm content with Warfarin to prevent blood clots, even though it failed me four months ago when I had two glasses of wine with dinner that spurred anticoagulation, and in adjusting that over the next two days, a clot got free and caused a "small stroke" and minor attenuation in the limbs on my right side. My doctors asked about switching to Xeralto, pointing out that (like Warfarin) there is an antidote to its blood-thinning power. I asked about Eliquis, but they advised there is no antidote on the market for that yet, so I opted to stay on Warfarin and immediately call 911 if I get ANY symptoms of stroke. They also advised against relying on Aspirin for clot-prevention in A-fib, mainly because doses that are large enough carry a risk of stomach and intestinal bleeding that occurs too readily in people over 70.
Welcome Mr. McCoy. I am Mary. New here too. I am sure with your 10 years of experience will be helpful to many people here. None of us can fathom what might be next around the corner...it makes today a sure thing. 😊
@1943 Hi this is Mary...mrk4445. Yes I experienced shortness of breath, and terrible fatigue. Had to push myself just to do my every day tasks and had to rest in between doing every day tasks like dishes and cleaning. For me not normal. Sit down to rest and fall asleep. Sleep 9 hours and wake up feeling exhausted like I was run over by a truck. It became my new normal way of feeling and it was robbing me of my life. I couldn't participate in my normal activities no longer. I would blow it off as aging or being out of shape. It wasn't. It was paroxsymal afib. I had an ablation procedure 5 months ago. Since my ablation I have gotten my life back. My energy level is back to normal. I have returned to everyday life symptom free. I have 6 month follow up soon. I am still on Fleconide for heart rythm and eliquis. At this point I do not know what my long term outlook is but I am grateful for relief of symptoms now. I would have an ablation again in a heart beat.💓 Maybe you would be a good candidate for an ablation or other procedure too. Maybe a consultation with your cardiologist could help explore the possibility and find find out if you are a good candidate...I hope you will find help and relief from your as I have.
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