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Patient advisory panel
I will be attending a meeting in NYC in November as a member of a patient advisory panel. This event is sponsored by the Arrhythmia Alliance. My charge will be to try to represent the needs of a person with afib. I have my ideas, understand how it effects me. Anyone else wish to chime in on how afib affects them. Please don’t send me how petting Aunt Tillies tabby cat brings you back to nsr, or how a diet of banana peels and coffee grounds can bring on an episode.
Spencer, October 19, 2019 9:07am EST
Ed - you know my story, and you know what AFib has taken. But here are some items:
1. AFib made me mistrust my body. I listen for each heartbeat and hope the next is in rhythm. I can not longer trust my heart.
2. AFib put me in the hospital, ICU, and OR. AFib drugs me through medical care that I didn't want nor understand.
3. AFib took away parts of my life. Parts that I dearly wanted and needed. I lost my coping ability that I relied on. This caused suicide attempts.
4. AFib changed my family. My wife watched me die in front of her; she was shoved out of the way while a chaplain talked with her and gave me my personal effects. My wife had had to deal and live with a man that now has a crippling disease instead of the healthy man she married. It has changed her world.
5. I changed my life because of my heart. I try not to stress it out too much for fear of AFib, I keep it low, and I take it easy. A vast portion of my life is off-limits.
Hope this helps Ed. If the alliance needs another advocate...
Edhammer, October 19, 2019 9:40am EST
Thanks. I know your story, but didn’t want to share it without your approval. Your points are spot on.
We will see just where this meeting may go. Could be window dressing, could be a sincere attempt to better understand this condition. For me the ever changing way it operates on us is the most challenging thing.
Live never been to NYC. Should be an interesting visit. Old woodsman in big city. Fortunately Kathy will keep me in line. I remember many years ago when I came out of the woods at Christmas. In a crowded store, a sales clerk reached for my purchases without saying anything. I instinctively grabbed his arm and immobilized him. I then apologized profusely.....
Spencer, October 19, 2019 9:48am EST
Please share. My story helps no one without the telling. Please use it as necessary. Please back brief me on the conference and if my story helped.
grandscheme, October 19, 2019 11:56am EST
So I will not mention that stroking my own cat Eddie helps me convert.
Edhammer, October 19, 2019 6:13pm EST
I know petting my dogs always seemed reassuring,especially at 3:00am in a cold winters night, when my partner was working 100 miles away. Did it help as I rode the storm of afib out? Of course it did. Can I say that it sent me back in sinus rhythm? I reall can’t, but their support was in valuable. As to triggers and ways to cope, it strikes me that each person is different. The quest for triggers sometimes seem to border on the obsessive. My experience tells me to experience it and not spend a lot of energy trying to figure out if the episode came on because I had a piece of pizza or looked at donut with lust in my heart.
Spencer, October 19, 2019 7:43pm EST
Ed - dog petting is actually very good. Several doctors I have now, have issued prescriptions for dogs. It takes your mind off of the disease and allows your heart to convert on its own. Several times in my stays at the nuthouse, they wanted us to color. Now, I can assure you that Spencer does not become less crazy with coloring but the intention is sound and works all the time. Occupy your mind and then your body will go back to being normal.
One of my central points is that Psychology is not used when some would help. We hold faith in medicine but discount those sciences of the mind. Some of those ideas of psychology would help those in AFib. So please mention that doctors need to work as a team with other specialties and also with the head doctor. I received far more medicine than I needed to come back to NSR and that is direct because of the silo mentality that I saw. I fought against it, my primary care manager didn't care nor have the expertise, my other doctors really couldn't care if their part was fixed, they were done. I tried to get an internist to care for me, and she locked me up in the mental health hospital. There never has wholistic care. I had more operations, medicine and ER time than was necessary. Please bring this point forward.
depotdoug, October 20, 2019 5:48am EST
1. Dog petting and exercising is also one of my go to anti-AFIB methods. Not necessarily in that order. A Siamese cat may be my dog in my AFIB PREVENTION PROGRAM. "APP" , another acronym sounds like it may be a catch phrase.
2. seriously E.E.C. Excessive exercising compulsion is still my anti-AFIB prevention tool. That's what my mind tells me. Depotdoug's rule is EEC'ing reduces Anxiety therefore shortens the probably of stressing the hearts electrical system.
3. Final comment maybe::: April 2013 I was inside a Medium Maximum Correctional Faciility for a Kairos Christian Prision Ministry. I did not have any idea what AFIB even was or how complex it was. This Thursday thru Sunday afternoon I'm back inside Miami Correctional Facilty again for Kairos24. Along with 35+ men in our team and 30 offenders (inmates) as our guests. Plus there are Security Dogs patrolling everywhere. Do pet the Canines inside prisons! No no. Am I fearful of being maybe under lockdown or worse inside prison. Not really . Am I fearful of returning to AFIB inside closed Prison security doors. My memory still exists. I'm stronger. More resilient more cardiovascular healthy than I've ever been. But AFIB could tear its ugly head again,I hope and pray it does not.
Finally. A lot weighing on my mind with return to Prostate Cancer now advanced. Will that weigh on my mind and push me over the AFIB limits ?? I shall let you guys know in 8 days.
4. my motto is now: "LIVESTRONG"... We will see, Edhammer. Thanks for letting me sgare my AFiB experince. Unique? Not really.
Thumper2, October 20, 2019 8:09am EST
Edhammer, from my point of view, one of the biggest needs of a person with AFib is to get them to an electrophysiologist as soon as possible, especially if they do not have dramatic symptoms. If I had known that, I might now be AFib-free, instead of pacemaker-dependent, etc. (I've told the rest of my story on here often enough.) Another big need is to have them checked for sleep apnea.
Have a great time in New York City! It's a unique place. Let us know how the panel works out!
Edhammer, October 20, 2019 10:55am EST
Edhammer, October 20, 2019 10:57am EST