Husband just diagnosed

Hello,

Last week my husband was diagnosed with Atrial Fibrillation. He was immedicately put on Coumadin, Plavix, and Verapamil... also given dietary advice.

We do not know how long he's been in A-Fib. He is not having any physical symptoms, except for an occasional weak spell. His pulse during the ECG was 145, but the doctor explained that it is not the actual count, but what is happening in between the counts. His pulse is very irregular... so much so that it is really hard to take his pulse.

My husband is not a computer person or a reader. So I am researching as hard and as fast as I can for him, and I am so happy to have found this site! Thank you all for sharing your experiences and findings.

Allen has his first appointment with the cardiologist tomorrow. He has had the ECG and the Echocardiogram and some blood work.

I am trying to put together a list of questions to ask the cardiologist. I would appreciate any suggestions you have.

My husband does not want to stay on these medications. He is very willing to take the more 'natural' route. One of my problems is that if it were my body, I know what I would do. But I am having a hard time feeling that "I" am making "his" decision for him by sharing my research.

Does this make sense to anyone?

If so, how do I come to grips with these feelings? Do I bow out and leave him to make all these decisions on his own? Or do I pitch in and help and therefore take the responsibility on my shoulders if he should take the 'natural' route and then something awful happens to him?

I apologize that this is so long. Please... any help or suggestions are greatfully appreciated!

Sincerely ~ Anne

Hi Ann,

You have definitely come to the right spot. My husband is computer literate, but understands nothing about medicine. I think the main thing to do is forget that you are "making his decisions for him". What you are doing is getting the information to him in order to help him make decisions. You may not have A Fib, but his A Fib affects you.

There are several things you have to realize right off the bat. Just because he is a Cardiologist, he doesn't necessarily know much about A Fib. One of the reasons for this is that this disease almost more than any other I know of is very individualized both in how it affects you and what will work to make you better or at least better able to tolerate the disease. What works for one is definitely not going to work for another. The Cardiologist is very useful in finding out about any other underlying heart problem that might be causing this, ie. Nuclear stress test, Echo, EKG etc. Unless he comes up with something in the heart that is causing the problem, I think I would want to be referred to an Electro Physiologist or EP. He is the Dr. that understands the "electicity" of the heart. My own Cardiologist makes no bones about the fact that he hates A Fib., because there is no one treatment fits all. I probably got to an EP faster than I otherwise might because of his personal antipathy for A Fib. At that point I didn't even know what an EP was, and I am a retired Nurse.

Read, read, read, and educate yourself the best you can. The internet is a wonderful tool, and this is one of the best sites out there.

Best wishes to you in your search to help your husband. You will find everyone here more than willing to help.

Cynthia

Hi Ann,

My husband and I both have LAF; he was diagnosed a few years before me; I had it for years before I was diagnosed in 2002. We have totally different methods for coping (or not!) with it, so I can truly empathize with your feeling of not wanting to do his thinking for him

I have episodes almost weekly; my husband has one occasionally and not even one every year. As soon as he starts fibrillating, he panics. He even panics when I have my episodes and used to take a tranquillizer. I stopped telling him when I have an epiosde about a year ago and just carry on.

He takes a whole series of drugs, two for the a-fib and others for GERD and high blood pressure. He believes what the doctors tell him and always follows their advice. I on the other hand, use the PIP method, take various supplement and do a lot of reading. He does not want to know anything about his condition, how the heart works or any of that "medical stuff". Anything to do with his body scares him. I want to know as much as possible and am forever asking questions (Wil, if you are reading this: I usually don't know the answers, but would like them!).

This long message really boils down to how much a person wants to know about his/her condition and how much faith he/she has in the medical profession. You'll have to either discuss this with your husband, or play it by ear as his a-fib career proceeds.

Thanks for listening!
Reet

Hi Ann, I think one of the best things I did when I was diagnosed with afib in 2005, was to order Hans first book. Go to the top of this page and click on Hans Larson's books, "Lone Atrial Fib, Towards a Cure.". He is the founder of this board and one of the most knowledgable on afib. IF your husband has Lone Afib, the information in this book will be so valuable. I am bot trying to sell Hans book, I just know it was so helpful to me. There is so much knowledge among the bloggers on this board and you will certainly learn a lot.
The first thing is to be sure he doesn't have any underlying heart conditions and if he is truly a lone afibber, then he can make some decisions about medication or going the natural route.
When I was first diagnosed I was put on a beta blocker and was recommended to take Coumadin. I decided that I would choose aspirin as I was afraid of the side effects of Coumadin. Since then because of bruising from the aspirin, I am now taking only Vitamin E and I am looking at Natto (a natural blood thinner).
I have chosen the natural route, identified my triggers (you will learn more about that as time goes on), I take supplements, eat good, exercise and stay out of as much stress as possible. I am currently on no medication as the beta blocker made me dizzy and other problems.
I would also recommend an EP, who understands the electrical functions of the heart in relation to afib. The cardiologist who diagnosed me, only wanted to put me on multiple medications, which I refused. The EP understood my desire to go natural and after my last checkup, said he would see me in a year for an annual unless I needed him. I have had only two episodes since my first in Sept of 2005, one was 13 minutes and one was 6 hours and I didn't do anything but relax and practice what I had learned on this board. We, who have been doing this for awhile probably know more about afib and how to individually control it then most of your cardiologist (we just don't tell them we do)...smile.
One thing that you and your husband should remember, Lone afib, in itself is not life threatening, just very scary. However, you probably don't want to let an episode go past 48 hours without contacting your medical person. Most of us choose to ride the episodes out rather than going through added stress and unneeded medications.
If I can help you in any way, please let me know. Sharon

Thanks for your replies. I have read and will re-read every one of them!

Question:

How many tests do you have to have to rule out "underlying heart problems?"

At what point can you be sure it is Lone A-Fib?

And:

Doesn't your cardiologist (or other doctor) get angry with you and possibly refuse to see you if you don't agree to take the medications?

~ Anne

Anne,

Yes, your doctor/cardiologist may well get angry & refuse to see you if you don't comply with his drug regimen.

My first cardiologist prescribed, at various times, digoxin, atenolol, sotalol and warfarin - all of which made things a lot worse than they were before I was medicated. When I told him what was happening, he dismissed me as a patient, because I was not "compliant". He had absolutely no intention of answering my questions, probably because he had no answers, and was annoyed that I did not consider him a god.

Luckily our family doctor sent me to another cardiologist who likes answering questions and has an open mind about non-traditional/alternative methods of dealing with a-fib. I have also seen an EP who has an open mind. They both admit that what I'm doing is probably as good as what they can prescribe at this time.

You will find that the medical profession basically does not like to see us fibbers, since they really don't know what to do with or for us. That's why this forum is so very important; we experiment on ourselves and find things that do, or don'r, work and pass the information to others. I truly believe that it is people like us who will eventually find, or help to find, the causes of lone a-fib.

Cheers,
Reet

In my experience, the EKG, several along with an event monitor, ECHO, Nuclear Stress test, Blood tests, and CT scans were considered enough to tell them I had no underlying heart problem. If you can't work with your Dr. ie he won't discuss various medications or ways to treat you don't want to be staying with that Dr. You won't feel comfortable or trust them. Of course, this is surmising that you have a choice of Dr. You always have the right to refuse treatment if you feel that it is wrong for you. Don't let a Dr. intimidate you. I am fortunate in that mine seem more than happy to work with me, and discuss with me how to best treat me. For instance, when I first took Flecainide I couldn't tolerate the med. When it became obvious that this was the only one I could take, he went along with my taking it with Ibuprofen, even though normally one would not take this with coumadin. We weighed benefits and risks and went with it. I tolerate the Flec. with Ibuprofen. Of course, now I am having some other effects from it, and these have been discussed with the Dr. again along the lines of risks and benefits. Your Dr. nurses, and or Nurse Practioners are valuable ways to speak with your Dr. indirectly. You will be having a long term relationship with your Dr. as this is not a disease that you are cured of quickly. Notice the years that some members have been writing to this board. It sounds as though your husband might be in some denial of having a problem, and or he doesn't care to be "sick" take medicines etc. For these reasons either diet, supplements may work if you are one of the lucky ones. He will always need to be aware of the disease though. Be open to all the treatments, and know things are happening in this field daily. Has to, as there are too many of us with the problem.

Cynthia

Cynthia, Reet, and Sharon,

Thank you so much for the information. It really does help to hear from ones who are going through this. Your posts help me to prepare for what lies ahead.

Today is the first visit to the cardiologist. Maybe we will have good news? I can hope.

At least from reading on this forum, I have learned some questions to ask and hopefully will recognize some of the terminology the doctor uses. I am the eyes, ears, and helper for my husband, because as one of you said... he is really in denial and just wants this to all go away and get on with his life.

Take care ~ Anne

I hope you post after his appointment---you may need a second opinion---if so seek one from one of the facilites spoken of here.....a great deal of experience with world class EP's and Hospitals have been discussed and shared here and you want to avail yourself of this experience!

The nice thing is that having discoverd this site---your not in this by yourself!

Thank you for the advice on getting a second opinion. Which words would I put into the search box to find the places/doctors recommended here?

Or would I just type in 'second opinion?'

Take care ~ Anne

Anne,

The second opinion service offered by the Cleveland Clinic looks like a good bet. I have not used it myself, although I was considering doing so.

Check it out at:

[www.eclevelandclinic.org]

People on this BB think most highly of EPs Natale and others who do their work at CCF; presumably this service would also do a good job.

Of course there is a built-in conflict of interest in any such service, as they are likely to mention consultation or further treatment at their facility rather than somewhere else that might be as good or better. With CCF, however, you can't go wrong since they *are* the best (along with Bordeaux and I would say some other EPs/surgeons with good reputations).

Good luck! I'd say you've gotten some good advice and wonderful support here.

--Dick Inglis

Buy Han's books---then get a second opinion---go to the facility that has the MOST experience ----Experience realy makes a diference---just read the post from those that did not ask the questions----



How do you measure success ?

How many procedures have YOU done ?

What is your success rate ?

and-----Don't expect miracles-----

Thank you, thank you, thank you! All of you. I do so appreciate all your replies.

Results of hubby's first visit to a Cardiologist:

Doctor asked: Why did your Family Doctor put you on both Plavix and Coumadin?

Doctor indicated: Upset at Family Doctors who run echocardiograms and then have them read by another GP who is not a cardiologist and then write up the report in "chicken scratch" and faxes it to the cardiologist who then has a hard time reading it! (I could sense frustration here).

Note: I think I can understand his upset. I would be too if I were him. AND if we had known in the beginning, we would have gone to the cardiologist FIRST and had him take the echocardiogram, instead of the family doctor. *sigh* Hindsight!

Doctor said my husband is in mid risk, not high risk (based on age, 63, no previous stroke or heart attack, and otherwise good health) *whew*...

and he is still in A-Fib. Doctor said many people have to live with it. He quoted a study where 1/2 were treated aggressively and the the other 1/2 treated non-aggressively. At the end of the 20 year study, there was no significant different in the outcomes.

I asked the Cardiologist about magnesium, and he readily agreed that magnesium deficiency can be a factor in A-Fib. And he said it's okay to try it.

He took my husband off Coumadin and Plavix, and said take 1 (325mg) enteric coated aspirin a day. Also wanted to put him on a beta-blocker (Metroprolol 50mg) instead of the calcium channel blocker (Verapamil 120mg) that my husband is taking now.

The doctor said he prefers beta-blockers, but if my husband chose to stay on Verapamil, he would would prefer him to take one that is extended release.

My husband was still in A-Fib, but the doctor really didn't seem all that concerned. He said that it is an aging thing... and that by age 80, 25% have A-Fib.

However, he did emphasize the increased risk of heart attack or stroke, and he did emphasize the absolute need to take a medication to slow the heart rate.

The echocardiogram showed "thickening of the heart muscle" and "weakening of the heart muscle." It did not show fluid or clots, and the EKG did not show any sign of previous heart attack.

Two things the Cardiologist brought to my husband's attention: his fasting blood sugar was 120, which put him at borderline diabetes; and his creatinine level was elevated indicating kidney function impairment.

NOW... we are trying to assimilate all this information, and decide which supplements to begin with.

The problem is: I read about one supplement, then it leads to another supplement that is needed, then that leads to another... and I am beginning to get confused about which are really important to start with, because we can't start with them all!

I will definitely order the book. Until it comes, I'll just do the best I can and get my husband started on the magnesium. (He already takes a number of supplements anyway).

Thank you to all of you!!! This is a very caring and supportive group.

Today I don't know whether to sigh with relief, (which I certainly did after learning my husband could come off coumadin and plavix)... or put a cattle prod to my husband because he is still somewhat in denial about what could become a very serious health problem! (Well, I wouldn't really use a cattle prod... just joking.)

Thanks again ~ Anne