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I'm a 67 year old female diagnosed a day ago. I'm on Eliquis and Cardizem (sp?). Will I ever live normally again? I get out of breath going to the mailbox or up one small flight of stairs? Will I ever walk a mile again? Or swim? Or vacuum my living room without shortness of breath? I feelike I'm 90. I hate this and I'm frightened. I'm having a TEE test on Thursday. Any advice/support would be very much appreciated.
AHAModerator, February 16, 2021 5:01pm EST
Thank you for sharing your story with the MyAFibExperience community. I'm sorry to hear that you're going through this and feeling so scared about your new diagnosis. As you hear from others on the forum, I can also share some AFib resources to help you learn more. Please keep us updated on how you're doing, we're rooting for you!
The AHA Team
emeraldmezzo, February 17, 2021 12:12am EST
Thumper2, February 17, 2021 8:47am EST
Emeraldmezzo, I can offer a few suggestions. First of all, are you seeing an electrophysiologist (EP)? This is a cardiologist who specializes in treating AFib and is often more up-to-date on things than a general cardiologist. I'm glad you're taking Eliquis (to prevent stroke). Other than stroke, AFib is generally not fatal, even though it's inconvenient (as you have noted!). I'm not familiar with Cardizem, so I looked it up on Google -- perhaps the sluggishness you feel is due to the Cardizem, but I'm not a doctor! However, I hope you'll talk things over with an EP and see if there are alternatives. When you go for your TEE, have a list of questions to ask (anyone)! With proper treatment, you should be able to do all of those things you mentioned. When I got into regular exercise, my shortness of breath (SOB) gradually disappeared. Please keep us posted!
DkinAA, February 17, 2021 11:58am EST
Emeraldmezzo, when I was first diagnosed with afib about 5 years ago, I was also started on an anticoagulant and Cardizem (generic name is diltiazem). At first I was on 240 mg extended release pill once/day. But that made me feel pretty sluggish, so my EP clinic moved me down to 180 mg pill. This is a common first drug plan for afib: the diltiazem keeps the heart from going too fast during an afib episode (they call it "rate control"), and the anticoagulant (I'm also on Eliquis) helps with the stroke risk, which is the most serious problem with afib. The rate control drug also tends to make the heart beat slower all the time, which is likely why I felt sluggish until the dose was reduced You'll find on this forum that afib is a very individual condition - different drugs may need to be tried, both for rate and rhythm control, and dosages invidualized. So you and your docs have to find out what works best for you - this can take awhile, but a good EP can really help.
For me, the hardest part has been the anxiety about getting an episode, or when it would stop once its started, not to mention being worried about having a heart condition - it helps to know that it is very common! I think there is a feedback loop involved - anxiety can trigger my afib (like some of us, at least), and then the afib itself causes anxiety, so it goes round and round. I had to work at controlling the anxiety and accept that even when it felt awful, chances are nothing awful would happen as long as I stuck to the meds. Mindfulness meditation really helps to handle the anxiety.
Also, you can learn a lot from this site and stopafib.org - there are videos there by leading experts. Being informed helps. Good luck and let us know how it goes!
crow671, February 20, 2021 3:26am EST
Having been diagnosed with it myself, I completely understand your fears.
I recommend getting in touch with an Electrophysiologist as they specialize in heart rhythm disorders and will be able to better treat your condition. Also, lifestyle changes are critical: cutting out caffeine and alcohol entirely is strongly recommended, as well as reducing your sodium intake to less than 1,500mg a day, which means eating little or no fast food (after reading the nutritional info on my favorites, I wonder how people are even still alive eating so much!), and ask your doctor about recommended vitamins.
Exercise is very important too; I personally walk at least an hour 2-3 times a week (due to my work schedule), but you may want to consult with the doctor on that too. The best thing you can do is get, and stay, in shape as much as possible. Afib is the most common heart rhythm disorder and plenty of people live long lives with it when managed properly.
Above all, I recommend seeing a therapist to address your stress and anxiety. Its just a part of having Afib. It does make things worse and can cause a feedback loop like DkinAA said- raising your heart rate, which raises your anxiety, and so on. Stress takes a physical toll and keeping it under control makes all the difference.
As for living normally, that’s dependent on your diligence in taking care of yourself. Afib tends to stay with you once you have it, but its not the end of the world and you’re not alone.
crow671, February 20, 2021 12:16pm EST
One thing i forgot to mention in my previous comment;
You might want to talk to your doctor about doing a sleep study to determine if you have Sleep Apnea. It can cause Afib and other problems AND make them worse. when you have sleep apnea episodes, your blood oxygen level drops and puts quite a strain on your heart because it neets to pump harder and faster to get the same amount of oxygen to the body, potentially triggering Afib episodes.
I did an at-home sleep study, eventually got my CPAP machine, and I've been using it for about 90 days now and it makes quite a difference in my overall health. My quality of sleep and my daytime alertness have improved, which is great when you dont have caffeine to rely on to get you through the day!
jerzeycate, May 14, 2021 2:21am EST
How did it go with the TEE?
I was given 3 months to live without a transplant in Feb of 2013.
It's been over 8 since my husband was told to "Take her home. Make her comfortable Get her affairs in order."
My EF was 11%. I was not eligible for transplant. An experimental complex cardiac device was implated to buy us sometime. I was given no hope, made no promises. But, before I left the Recovery Room the Medtronic Quad S-CRT-D had taken over the functions lost when my cardiac electrical system was decimated by a vial infection (Coxsackie B).
Unfortunately dealing with cardiac issues is a Marathon, not a spint.
Have you spoken with medical team about your symptoms? What did they say/suggest?
Have you eliminated salt/sodium to as low as you can? I went to clean eating which, early on, was a pain.. It soon became old hand and I even bake everything from scratch. Once you have spices/baggies/freezer bags in the house, it becomes rather simple change to make and can make a tremendous difference in cardiac functioning.
I met with a Nutrition to really understand how to change my diet though my problems are not related to CAD, Once you reach this point, you mneed to make drastic dietary and lifestyle canges. Many people tell me they aren't changing diet/lifestyle changes since they are taking meds and/or have a device. Let me say this I totally had to live in a CCU until they implanted the experimental device. I had made drastic dietary and other lifestyle changes but without the device it wasn't enough. Ablation sugery and the CRT-D enabled the other treatment protocols (specifically medications) dietary, and stress managment changes to become effective in treating my cardiac issues.