Afib and heart failure

Add to my post, and I apologize for the length. My friends aunt was diagnosed with stomach cancer at age 80. She was told that she needed an operation, chemo and radiation. She said No!

They told her it was her only hope or she would die soon. She lived 12 more years. A friend had breast cancer. She did it all, lost her hair, and spent the last year of her life in doc office, hospital, etc. until she died. She like many others I know ended up saying, if they could do it over again, she would not have gone that route.

@elewis203
I know many other health facilities will give second opinions after sending medical information to them. I did this with UFHPTI. I am a Mayo patient but wanted a second opinion. Mayo sent my medical information to UFHPTI (must sign consent forms but UFHPTI handled it).

I then got a second opinion from them in person.

Not sure which Mayo Clinic you live closest to but call them. Also consider Cleveland Clinic another outstanding heart specialty clinic.

Thank you for your concern, however.... 1 I have been reading for months the comments on this blog, what people experience with the meds and treatments. Some work, some for awhile, and the side effects of the meds. What goes on with the treatments, and no thanks. 2 I now live in another country for over 10 years, and they have what are considered excellent docs etc.

Although there are different names for the heart beat problems, I had serious episodes for 7 years from age 14=21, and learned some people are extremely sensitive to caffeine. I quit and did not have problems until age 75 when I was eating coffee ice cream made in the US, and realized that was the problem. Since then have had minor issues.

I will make some add'l changes and see what happens. Was talking to my sister last night and she and her husband had gone to docs and they did umpteen tests and said they could find nothing. That is why I don't go. Been there and done that.

I am not interested in spending the rest of my life having tests, reactions to meds which I always have, and yucky treatments. I know how they do in the US surrounded by teams. If I would have something done it would be here. Nine years ago, I had a cancer on my cheek. He examined it, opened a book and showed me the type I had, and dug a small hole to remove all the same time, and was healed and cannot tell I had a problem. The whole procedure with antibiotics cost equal to $140. In the US there would have been visits and team of doctors and bills and stress.

I could write a book on the ridiculous experiences I have had with docs that did not help. We are all different, but for me, knowledge, habit and diet changes to get rid of the root of the problem, and prayer work for me. We will all die of something, but for me it will not be because of drug reactions, icky treatments, teams of doctors, or in the hospital, and I have seen what occurs there in the US and here.

Thank you for your concern, however.... 1 I have been reading for months the comments on this blog, what people experience with the meds and treatments. Some work, some for awhile, and the side effects of the meds. What goes on with the treatments, and no thanks. 2 I now live in another country for over 10 years, and they have what are considered excellent docs etc.

Although there are different names for the heart beat problems, I had serious episodes for 7 years from age 14=21, and learned some people are extremely sensitive to caffeine. I quit and did not have problems until age 75 when I was eating coffee ice cream made in the US, and realized that was the problem. Since then have had minor issues.

I will make some add'l changes and see what happens. Was talking to my sister last night and she and her husband had gone to docs and they did umpteen tests and said they could find nothing. That is why I don't go. Been there and done that.

I am not interested in spending the rest of my life having tests, reactions to meds which I always have, and yucky treatments. I know how they do in the US surrounded by teams. If I would have something done it would be here. Nine years ago, I had a cancer on my cheek. He examined it, opened a book and showed me the type I had, and dug a small hole to remove all the same time, and was healed and cannot tell I had a problem. The whole procedure with antibiotics cost equal to $140. In the US there would have been visits and team of doctors and bills and stress.

I could write a book on the ridiculous experiences I have had with docs that did not help. We are all different, but for me, knowledge, habit and diet changes to get rid of the root of the problem, and prayer work for me. We will all die of something, but for me it will not be because of drug reactions, icky treatments, teams of doctors, or in the hospital, and I have seen what occurs there in the US and here.

Is it possible to get a 2nd opinion from Mayo Clinic with only sending test information (from another teaching hospital, Stanford)?
My husband had open heart surgery at Mayo in 2012 and is having shortness of breath, diagnosed as needing a new aortic valve. Stanford is moving at a snail's pace and he needs help right away.
I would appreciate any thoughts.

I have been told there are two types of heart failure: systolic and diastolic. When EF is low, the HF is systolic.

In my case, I have adequate EF, but I have been told that my heart is "thickening" and I have diastolic HF.

To circle back to the original question by katieketeny (who also has thickening), I am taking both Flecainide and metoprolol; both of which are prescribed by my EP and my cardiologist. I do not have a HF specialist.

While I have had AFib several times in the past (currently in NSR), no one has told me that AF could have caused this thickening, so I find that very interesting. FYI... I have been on Xarelto since my first instance of AF.

I have been wondering about this diagnosis of diastolic heart failure and what could have caused it since my EF is over 60. I am also concerned that it could be progressive.

Any information on Diastolic Heart Failure would be helpful. Thanks!

While I am a nurse and have worked in the medical field for over 40 years, I certainly can appreciate your point of view. You are so right about the US approach to everything--a "team" with everyone having their own expertise and often not working in conjunction with each other. It really takes someone who is highly invested in their own issues to do diligent research to make sure they know their options in treatment. So many patients are either too trusting or too intimidated to speak up regarding their treatment options. You are also correct about medications; a smart cardiologist once told my husband that "all medication is really a poison" and that the "benefits" had to override the side effects to make them worth taking. This doc was highly against statins (they were very new then) and encouraged lifestyle changes as the "cure" for high cholesterol. While we tried the "seaweed and bark" (joking) diet plan, my husband's cholesterol problem was more genetic than purely dietary and the endocrinologist that finally ordered a statin for him really did save his life. It is a combination of things in the end. It is the desire to live a better quality of life. My nurse friend's father took her non-medical sister in the ambulance with him during his heart attack because he knew she would let him smoke one last cigarette on the way! As for me, after one A-fib experience that lasted 6 weeks before I could safely get cardioversion, I have done everything on the list to reduce my chances of reoccurrence except change my age! No caffeine, chocolate, alcohol, heavy meals; exercise daily as I did before, lost 10 pounds (even though I wasn't overweight), sleep improvement with attention to the position I sleep in. I take the meds and hope to heaven they work and so far I have no side effects, luckily! We all will die of something as you said, so it is quality of life in the time we have left that matters! As my husband said years ago after his heart attack--when he quit smoking cold turkey and began exercising and eating more healthy foods, "I'm not willing to die for a pork chop!" I loved your comments; unfortunately, Americans are much more willing to want a pill/treatment for their "condition" than to do the things they can do for themselves.

@bettycll, heart failure can be confusing. You might be interested in this related discussion where Mayo Clinic cardiologist explains:
- Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

I'll also post his video here where he explains
Dr. Farris Timimi, a Mayo Clinic cardiologist and heart failure specialist, describes the phenomenon of heart failure with preserved ejection fraction, in which the heart has difficulty filling before pumping.

Hi Colleen - THANK YOU for this message (by the way, I started a reply earlier and lost it - so if you get two replies, that is why). I found Dr. Timimi's explanation very helpful. Another individual indicated that AFib was a factor (I do have AFib, but am currently in NSR). I also experience shortness of breath - can't climb a staircase without huffing and puffing, nor walk up a hill. I did not realize that this diastolic heart failure could be a cause for my SOB, since I also have CLL and other issues. NO ONE seems to be familiar with this, and I SO appreciate the information! Heart failure is generally considered when EF is 20 or 25. Mine is 64. My doctor says age is a factor. If that is so, why do I not hear of it frequently? There are many of us over 70! Thanks again for the information. I would love to hear from others who have been diagnosed with thickening or diastolic heart failure and hear what they do and how they manage it. My doctor is recommending Jardiance. I am a bit concerned because I am not diabetic. As you can see, I have lots of questions and concerns, so I appreciate any information.