October 20, 2017

Afib Patients Tell Doctors and Hospitals What to Consider in Planning Atrial Fibrillation Patient Events

When we at StopAfib.org prepare for afib patient events, we try to share what we have learned from patients attending previous events to make each event go as smoothly as possible. We’ve summarized what we have heard and would like your input.

Please check out our list of things for hospital marketing folks and doctors to consider in planning atrial fibrillation patient events-it’s posted in the Events section at StopAfib.org so we can keep it updated with the latest findings.

Once you’ve read it, please come back here to post your comments below. Do you agree or disagree? What did we leave out that doctors and hospitals should consider in planning an afib patient event? Thanks for your help.

Open Letter to Doctors and Hospitals Planning Atrial Fibrillation Patient Event

Comments

  1. I have read that there are other therapies such as acupuncture, IV and oral magnesium, coenzyme Q10 to help patients get a handle on afrib and other types of arrhythmias. Do the doctors have knowledge of such therapies?

  2. Fernand,

    Thanks for your suggestions. We try to cover most of those areas.

    It’s so heartening to hear folk say afterwards, “This is the first time I’ve really understood my afib.” It’s good that they have learned so much at the event, but is really sad that they didn’t have that info already available to them. We’re trying to help folks feel like they are not alone.

    Thanks.

    Mellanie

  3. Jan,

    Thanks for sharing your comments.

    The comments for doctors weren’t meant to be condescending or insulting, but I had to seriously edit some very caustic patient comments in order to use them. Please keep in mind that when we’re in afib, we can be very crabby, and doctor egos can really seriously bug us. Doctors need to know that.

    Also, hospital marketing folks are more likely to pay attention to the messages here, so being subtle is fine. Heart doctors, however, are so very busy and are doing so many things at once that it is harder to get their attention; thus, we (that includes the marketing folks) have learned that being direct is more effective for doctors. It was not meant offensively, but to help them understand where afib patients are coming from.

    I hope this makes sense.

    Anyone else have comments about this?

    Mellanie

  4. Pamela,

    I agree with you – getting afib isn’t exactly like hitting the jackpot. A lot of heart conditions are much easier to deal with than afib. I find that kind of comment comes from those who have never experienced afib and who still think of it as being benign and have no clue as to what afib does to you. If they had ever experienced it, they wouldn’t make comments like that.

    Mellanie

  5. Fernand Ruiz says:

    Show video on blood thinners safety.Explain in laymens terms the differnt stages of AFIB the different degree of severity,some patients have Paroxysmal AFIB etc,explain a Transient Ischemic Attack (TIA). Explain the latest procedures for patients that can not tolerate longterm use of antiarrhythmic drugs Explain the differnt treatments Catheter Ablation, etc. and risk factors a heart blockage to conduction system etc. ex-mase procedures removal of LAA etc..what may be available in future the success rate of the ET.I ‘am not satisfied with my Cardiologist.,because AFIB was never really explain to me the info I recieved was from the net.Patients with AFIB feel all alone,I know I did and still do. I guess I live in the wrong part of the country.This is the United States Of America.I can not get decent healthcare

  6. I read the open letter to doctors and hospitals… and I feel the section directed at the physicians is slightly condescending. There would be other ways to word the issues without insulting the readers. The hospital section was very well worded and sounded professional. Thanks!

  7. Pamela Shira says:

    I had an Afib day with trip to ER. The cardiologist I saw told me I had hit the “jackpot” of heart conditions. Of all the things heart related afib is the best one to have. Funny, I don’t feel like I’ve won the jackpot!

Comment