My doctors will drive me to... death ... - Atrial Fibrillati...

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My doctors will drive me to... death due to conflicting medications.

Fish109 profile image
17 Replies

Health insurers hate me. I am on about 15-10 medications. At age 53, I had a small heart attack. I was born with a defective heart valve that was replaced 7 years ago (Afib was the sign it needed replacement). I thought the afib was gone. Then, 2 months ago, that valve was again replaced along with redoing the aortic root and a one artery CABG. I also have rheumatoid arthritis for at least 20 years and am on 3 mg prednisone, 15 mg meloxicam, 2 shots of Enbrel/week, 7.5 mg methotrexate and have asthma (more inhaled steroids). So the cardiologist now, after the 2nd aortic valve replacement surgery, puts me on 5 mg of Eliquis 2/daily and tells me I must stop taking at least the meloxicam (this is the drug that helps me the most with rheumatoid arthritis). I already had "thinned" blood so was given a cow heart valve... and now they give me more blood thinners (agreed, Eliquis is an antiX4 antagonist)? So first I asked the cardiologist to reduce my Eliquis to 2.5 mg (half the dosage). He refused saying it was the wrong dose. So I ask the rheumatologist what else I can take. He says I can increase the methotrexate - which I have done in the past and has never given me any pain reduction. I had a little rectal bleeding yesterday, which I suspect was only hemorrhoids but scared the **** out of me. I called the cardiologist. He says, "It's your life. If you choose, you can go back on the aspirin instead of the Eliquis (taken after the first heart valve replacement b/c Eliquis had not yet been invented) but I will not lower your dose of Eliquis." So I admitted to the nurse that I had been cutting the pill in half myself and she said that was bad b/c it is a pill not meant for cutting due to the effective part of the pill not being evenly distributed. This stress is killing me. Taking the Eliquis can cause a stroke all by itself. Not taking the Eliquis means a higher likelihood of heart attack and/or stroke. Anybody have a similar situation and is still alive? (I am 71; my family members are usually dead by 72.) Any ideas? Yes, I take Valium at night to sleep... last night ALOT!

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17 Replies
ncernaa profile image
ncernaa

I'm sorry to hear that. I would try to eliminate some of those drugs from your system. They will cause nasty side effects. Have you tried changing your diet?

Fish109 profile image
Fish109 in reply to ncernaa

Yup. I eat almost no carbs or red meat. As salt-free as possible. My diet is very... monotonous! Thanks for the idea, though. Sometimes you just can't fight your genes! It's the doctors I am most upset with. They find a new drug and think that one-size-fits all. And the study was probably conducted by the manufacturing drug company.

CDreamer profile image
CDreamer

Managing one chronic condition is troublesome - managing 2 or more with contraindications for various meds is ridiculous! It is a full time occupation.

I also have autoimmune disease and take Apixaban (Eliquis) with not a worry. The risk of stroke from AF related clot will be considered higher than risk of stroke through cranial bleed from Eliquis.

I can’t take any Heart meds for AF - but I wouldn’t dream of messing with my anti-coagulants.

I refused Methotrexate - nasty - if it’s not helping why risk it? I can’t take steroids as I already have oesteoparosis and my specialist believes very much in first do no harm - ie the Methotrexate & steroids.

It does sound as though you have a very complicated time of it and I am sure it must be worrying and time consuming managing it all - but in your position Eliquis is the one drug I would happily take to decrease your stroke risk.

Best wishes

Beckyboodle profile image
Beckyboodle in reply to CDreamer

Great post CDreamer.

Thank you my situation is a few conditions to deal with and I find your post very helpful.

CDreamer profile image
CDreamer

PS - in the U.K. aspirin is not used very much for Lone AF as it is an antiplatelet - which I guess you need for the valve. Eliquis does a completely different job and neither ‘thin’ the blood - very inaccurate and confusing term which doctors should not use! Personally I would be more worried by the daily aspirin.

seasider18 profile image
seasider18

NOAC's are contra indicated for tissue heart valves by the makers but God like cardiologists mostly told me that they can over ride that advice. They said it was because they had not been fully tested on tissue valve patients.

ggcprescribing.org.uk/media...

I’m sorry for what you’re going through.

Hello and welcome. So sorry you're not feeling at ease with your medication. Cardiologists are bound to see the health of one’s heart as the goal and as CD says it can be a tussle to cope with conflicting needs and advice from different specialists.

But in living one’s life, it’s surely one’s own priorities that are important? Does one want to continue for years ahead and put up with discomfort and agonies? Or concentrate on pain relief regardless of the long term significance? Do we want to enjoy eating and doing things that are bad for us or make do on a diet we don’t much like in the hope of living longer?

Anticoagulation, for so many, seems to bring (along with the protection from stroke) peace of mind. But it is no fun if, instead, it introduces a sense of insecurity, with a haemorrhage looming in an uncomfortably imminent way. One can be wrong with this gloomy forecast, and feel mistakenly moribund taking an anticoagulant - and then become more complacent as years pass and no catastrophe materialises.

Is it not worth remembering that life can be very fragile and those of us who have reached three score years and ten have done well, especially if there have been wobbles along the way. And it’s not only ailments that may see us out - the world might come to a sudden end! Perhaps worrying about one’s long term health can rob one of the enjoyment of days that may be short in number.

Fish109 profile image
Fish109 in reply to

Thank you and very well written (I doubt you from the USA). I am only about 3 months into this and am considering getting a second opinion from a different cardiologist. I would love to be on the Eliquis if the chance of an internal bleed was lower. This can only be accomplished by a lowered dose and getting older very quickly (over 80 years old).

Hi Fish. Have to share my experience with you.I am sorry you are going thru all that esp doctors giving you meds concerned with their own specialty apparently without much regard for how they affect other systems and medical problems. It seems up to us to sort it out and when we look for our own solutions some docs get offended and often spread guilt, intimidation, and fear to gain compliance with their plans. I believe there is often more than one solution to a problem-sometimes hard to find. I am in permanent A-Fib and since diagnosed in 2011 have had many probs with cardiac drugs and especially anticoagulants. About 5 years ago was also on many meds and was getting tired of their side effects. An aside- an ER doctor suggested I try giving up dairy to see if it helped my asthma. I was on the usual 4-5 asthma drugs-inhalers/pills-you know the drill. I did, went for some months with no problems and began cutting down; currently no asthma episodes, no asthma drugs, then I lost weight, changed my diet and got off insulin-currently no diabetic meds-just diet controlled. I. My a-fib doc suggested an ablation and a pacemaker in 2016. I did both, am doing well, and take no cardiac drugs or blood pressure drugs-just furosemide. Then my last wish was to get off the anticoagulants. There is controversy among docs and others about a procedure called Occlusion of the Left Atrial Appendage which can cut AF stroke risk and eliminate anticoagulants. It is done by cardiac catheterization so no open surgery. There are several different devices used -mine is a Watchman. I had it done in Jan, am off coumadin and will be off Plavix in July. It is fairly new and some docs are absolutely against. But I was so tired of anticoagulant sjde effects I was ready to try. (Google and see what you think.) Just a thought and a little info that might be helpful. I heard a term for having so many meds. It's referred to as being on a "medication cascade'. I was a nurse and I am willing to do whatever I can to keep my med # as low s possible. Hope this is helpful in some way for you. Take care. irina (US)

Fish109 profile image
Fish109 in reply to

Thank you! I read about the Watchman on this website last night. Naturally, my cardiologist never mentioned it. While he is extremely well trained, I believe he has Asperger's syndrome and just has problems empathizing and compromising. I will be looking into it to see who does this frequently in my area - and, obviously, with a different doctor. In my case, my asthma is very light and I take few meds for it... or rather, I don't take the inhalers as frequently as prescribed. The rheumatoid arthritis is the big problem aside from a family history with terrible heart disease problems.

in reply to Fish109

Hi Fish. Just an addendum. The doctor to speak with about the procedure is an Electrophysiologist. They perform the procedures and often regular cardiologists are not as educated re the procedure as they might be later down the road. I think people, incl docs, tend to not support things they don't fully understand. Also, if you want to PM me with questions, please feel free. I am happy I did it and am doing well but it's not to be taken lightly. I just don't want many of the sx related to long term coumadin esp in the elderly. There isn't a lot of info out there yet. My suspicious nature says Big Pharma would like to sweep any more Coumadin sx under the rug. It is such a money-making drug. My opinion about the newer classes of anticoagulants is that they haven't been around long enough for a complete picture to emerge. Just my opinion and feelings about meds in general. Too overused and too easy an answer. Take care. xx irina

jwsonoma profile image
jwsonoma

Hello Fish,

Your situation is substantially more complicated than mine.

I had a minor Fib stroke 3 years ago (lost my ability to recognize letters and read for about an hour).

I guess I lucked out. Very short afib events can cause devastating strokes and aspirin really is not effective.

California is known for being progressive and or wacky but you may want to take a closer look into diet and rheumatoid arthritis. There are several doctors out here who are focusing on major life style changes to combat autoimmune and other illnesses. Dr Dean Ornish and Dr John Mcdougall to name a couple.

Their approach is Not a money maker for the the medical industry.

My brother was diagnosed with 45% blockage of his coronary arteries. Instead of bypass surgery he went on a low fat vegan diet. 5 years later he was given the all clear, blockage gone and did a full Iron Man for his 60th Bday..

There are no negative side effects following a vegan diet for a couple of months vs trying another medication to counteract the side effects of a medication which is counteracting side effects on yet another one.

Take a look at:

drmcdougall.com/2014/05/31/...

Best of luck

in reply to jwsonoma

I agree there are many things to try starting with diet that can help us avoid invasive treatments and lifetime meds. If simpler measures don't work you can always choose more medical oriented solutions. But it can't hurt to start with simpler solutions. This is the philosophy I try to use for myself when possible. I also like much of what Dr McDougall has to say about diet/nutrition. 😊

Polski profile image
Polski

I was going to respond, but I think it has all been said. Definitely find an EP (Electrophysiologist). Please let us know how you get on - Best wishes.

EngMac profile image
EngMac

Dr. Sanja Gupta from York Cardiology has a YouTube video on anticoagulants and stroke related to AF in which he says his research does not indicate that AF increases stroke risk. You can google it. If AF has such an impact on stroke, I have always wondered why it is not part of the CHAD type scores.

The heart may or may not have a left atrial appendage; and if it does, there are four types, each of which influences differing stroke risks. The chicken wing, the most common, has the least risk. The names are chicken wing, cactus, cauliflower and windsock. You should ask about this. When I asked, I was told: "Oh, they don't check this." An esophageal echocardiogram must be taken which is more complicated and costly to conduct than the regular heart echo. So I guess you need to press for this special echo before any operation to close it.

Dr. John Bergman in California has some good YouTube videos. You may find some that apply to you. He takes a seemingly common sense approach to health care causes and solutions which may be worth considering. He thinks many of us have BDS - bad doctor syndrome. You may have this disease.

Fish109 profile image
Fish109 in reply to EngMac

I had the esophageal echocardiogram before the valve replacement. Never knew why.... Next time I visit the cardiologist I will ask him what is the shape of my left atrial appendage - if I have one! Thank you!

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