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My 86-year-old husband and I feel we have been in a twilight zone since undiagnosed heart attack August 24 (ProBNP 1,734, though it had been very normal as of routine check April 2018). On August 24, ER diagnosed new atrial flutter / tachycardia, which are now persistent. DH can’t stand or walk without tachy. Before Aug. 24, he could walk up/down 100 stairs (with rests). Now he can’t even stand or walk slowly. The flutter/arrhythmias have been constant since Aug. 24. Breathless, swelling, very fatigued. This guy is a former psychologist and weightlifter and quite conscious of the need to maintain physicality.


Upon release from ER, instructions were to see cardiologist the next day or week. But Cardiologist referred DH (Dear Husband) to primary (Sept. 5). Primary ordered chemical stress test and Eliquis (anticoagulant). Shocked by the cost of Eliquis, I went looking for discounts. While on Eliquis web site -- a very clear warning: Do not use this drug if you have an artificial heart valve (which DH does). A week of calls to primary and cardiologist, who didn’t communicate with each other. Cardiologist said DH did NOT need the stress testing PCP had ordered. PCP allowed Warfarin in place of Eliquis, but Cardiologist wanted to stay with Eliquis. Another week of self-research to help DH affirm he wasn’t going to risk Eliquis (hey, leave alone pay for it). Another week to get the Warfarin RX. Cardiologist refused to see DH til his routine six-month checkup, which was Oct. 12. In the meantime on Sept. 5, Cardiologist tech angrily performed a two-second EKG and impatiently said “There’s the flutter.” Slammed out of the room, and angrily ordered DH to “wait.” They were going to do a cardioversion. DH also has severe back pain from failed back surgery, and the chair/exam table was excruciating. I went out to find tech and to say he was in too much pain and not quite ready for another procedure, that we were stressed by not knowing what was going on. She snapped and harshly ordered DH “You sit and wait.” We became upset with her disrespectful attitude left.


The next day DH phoned the Cardio to explain that he was nauseous from pain and needed to speak with cardio, not techs, and needed to ask questions. The longstanding Oct. 12 appointment was left as our only option to speak with the doc.


On Oct. 12, cardiologist pushed for cardioversion, implying it would cure all and was a piece of cake. We had already read a great deal about the statistical outcomes (roughly 50% will go back into arrhythmia rather quickly and that the procedure could create new arrhthmias including ventricle). We asked the RN what seemed like intelligent questions, including about the anesthesia (DH has endured a six-hour heart/bypass surgery and a seven-hour triple laminectomy since 2015). RN queried Cardiologist, who dismissed our concerns and basically patted DH on head saying, “There, there.”


We twisted our growing fears around to where we were in blind acceptance, and about to comply with the treatment recommendation. When the cardioversion scheduler called – they hadn’t even checked to see if DH’s anticoag factor was within range and for how long! It’s supposed to be within range for at least 3-4 weeks to reduce risk of stroke. DH had only begun taking Warfarin, and was only in range for maybe two weeks.


Finally, DH had kept track of his heart rate over the prior two months, and his rate changed wildly from tachy to bradycardia (20-30 bpm) at unpredictable times. Clearly, this was not simply flutter? This ?could? be Sick Sinus Syndrome?”or something else – for which cardioversion may not be the best. But no additional diagnostics were deemed necessary by cardiologist (phone consult via RN).


That caused us to feel we needed a second opinion and to ask our questions (now we have to wait til December 3). The pharmacists at the anticoag clinic all seem puzzled by why DH had to wait so long to speak with a real specialist.

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My FIL graduated from a big name med school but practiced back in his home town. He never went to the local cardiologist but chose to take off work and drive many hours to one of the renowned cardio centers within 8 hours of his home. I really believe you need to go to the big name brand school with all the latest technology and the comfort of knowing many people oversee the standards of care there.
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tacy022 Oct 28, 2018
I do not think someone should go to a hospital just to become a statistic. There are better doctors at just as well known hospitals that just do not have big donations due to a football team.

Exes father was sent to U of M from my area. They did triple bypass on someone who was not a good risk. Didnt restrain him after surgery. All his ribs and sternum were broken, a flap from his hip was put over the chest area...3 months there, 3 months in rehab and a $170k of medical bills insurance did not cover. The guy couldnt even tie his shoes or walk without falling for the rest of life (3.5 years). Bankruptcy, no quality of life and sacrifices by others just because an unnecessary surgery was performed...but hey, they wrote an article and got additional funding 👍👍. When the surgey is over, your relationship with them is over, not even return calls for questions except for the letters asking for donations. Its a joke.

No offense, but 50s husband is 86 years old. There are alot of procedures that can go wrong due to age, brittle bones, etc. I do not want her to have to go through what I went through...people are not just a number or stastic for funding.
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Both of my parents had heart problems.  Mom had A. Fib and was 100% pacemaker dependent the last several years of her life.  We traveled an hour to the Arrhythmia Center at the Heart Hospital in our state.

I think that you and your husband need to go to the University of Michigan Frankel Cardiology Center because 1) " where husband's heart surgery was done", and 2) they have an arrhythmia center.  These doctors KNOW what they are doing and how to deal with arrhythmias.   Say "Good Riddance" to the Cardiologist that your husband saw after his surgery. 

Check to see if these doctors go to satellite "Specialty Clinics" located in clinics or hospitals in small towns around the state.  We have two different groups of cardiologists who travel to 6-10 different small towns with a different doctor visiting the clinic every week.

https://www.umcvc.org/conditions-treatments/heart-arrhythmias
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tacy022 Oct 28, 2018
U of M pays alot of money for advertising and only is sent patients from specific small hospitals they have contracts with. In my city, one of the hospitals has a better program than U of M but if an ambulance takes you to the wrong hospital, instead of sending a patient 3 miles down the road, you have to be taken to U of M which is about 2 hours away...all due to agendas between the hospitals. Unless you have had dealings with them, please do not suggest them. My mom is a nurse and had to go there when I was making decisions for someone and don't believe the hype. There is alot better patient care at other places. The nurses union voted to strike last month and one of the concerns is safety of patient due to inadequate staffing. There is a tentative agreement in place but nothing is finalized.
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50'schild, I'm most concerned that you get DH seen soon by a doc who knows (or will listen to) his hx. Please keep on touch here.
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50sChild Oct 29, 2018
Barb, today were disappointed that we couldn't get in at U-M til Dec. 12. Not sure we're going to wait that long. Cleveland Clinic is on our minds ... wonderful place to visit when blizzards happen. Your concern feels really good!
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Actually, also one thing about the meds.

Every good patient reads the patient information leaflets. Because we are responsible citizens who wish to work well with our health care professionals.

But the PILs are essentially a**-covers. If they were obeyed to the letter nobody who's actually ill would be able to take anything much.

So if your doctor px's something and it comes with a skull and crossbones on the label and dire warnings about not taking this if you've ever had or think you might have had athlete's foot... Don't just not take it, call your doctor and ask him to explain why you can safely ignore the warnings.

I did this once, when my mother was px'd colchicine for her acute attack of gout...

Self: "It says don't take this if you have impaired renal function. Aren't you concerned about her chronic kidney disease?"

GP: "I'm more concerned about the pain your mother is in."

So was mother, to be fair.

With the Eliquis, I'd be asking for a justification of that decision - how is it so very superior to Warfarin that we are prepared to ignore the manufacturer's own advice concerning artificial heart valves?
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50sChild Oct 29, 2018
I so appreciate your take on the reality of warnings! Your poor Mom was in pain, that puts a real agony in decisions. But geez, Warfarin (around and highly studied since the 1950s) vs Eliquis -- even pharmacists say don't do it as it's not been studied and the lack of study is why the warning is there.

PS I asked about disaster response and availability. Warfarin would be delivered "by the ton" to a disaster site, not Eliquis.
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Overly concerned... Overly *concerned*? *Overly* concerned?

I'm reeling. I keep going back to check that DH was discharged from ER with those symptoms and instructed to see his cardiologist nearly two weeks later, then the communications cock-up with the PCP...

What species of doctor saw him in the ER?
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50sChild Oct 29, 2018
ER doc was a resident who consulted with DH's cardiology practice, who said the practice would phone us to make appointment ASAP. They dropped the ball for a whole week (after we "reminded them), before reaffirming the longstanding Oct. 12 appointment.

"Overly concerned" is actually as THEY seem to see it, not how I see it. Cardiologist smirked like we were cute little "overly concerned" people. He said proudly he does eight cardioversions a day and it's "nothing." Well, he's not 86, eh?
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Thanks for reading my long message, and for your replies Barb and Tacy. We live in Kalamazoo, MI. Yes, the PCP had referred husband back to his cardiologist. But PCP is in a different hospital system than we want for! 2nd opinion. Right now we are seriously thinking of University of Michigan Frankel Cardiology Center, where husband's heart surgery was done. They have an arrhthmia center. It's a long drive, but I don't think our local alternatives give us adequate access to the specialists. Your answers helped snap me into action. Thank you!
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tacy022 Oct 28, 2018
Thats a long drive. Have you looked in Grand Rapids? Two of my cousins work in a Kalmazoo hospital and both go to Grand Rapids for their heart problems.
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When I caregave, I dealt with a PCP that was a quack and believed that sickness was a test from god and you prayed it away. He only sent people to a cardiologist that agreed with him and was kicked out of the two main cardiologist groups in town. When I doubted him, I asked for a second opinion which the PCP refused to refer. I ended up calling the cardiologist my family uses and my mom worked with and he agreed to see the patient. The new cardiologist completely changed meds and the patient improved but it was nicely explained that the patient had limited time. He also had the patient get a new PCP.

You can always ask for a second opinion if you do not agree with your cardiologist. You have that option.

The thing is though with the information available on the Internet, we over analyze information. Sometimes the benefits outweigh the risks. So if you get a new provider, keep an open mind.
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50sChild Oct 29, 2018
That's good advice Tacy. I know what you are saying about the Internet. I am pretty careful to favor primary research studies, and my husband knows well how to critique statistical reporting with a fine tooth comb. I guess part of our frustration is that there aren't all that many medical studies that look at outcomes for people in their eighties and nineties. I'm glad your second cardiologist made reasonable changes for the patient you refer to. What a godsend.
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50s child, where do you live?

My husbaand and I can get in to see our cardiologist within a day if there is an issue.

Have you tried asking the pcp's office to call for the appointment?

This reminds me of my DH's last colonoscopy. Office staff at GI docs told my husband to stop all meds 3 days before his appointment. "Even my warfarin" ( he also has an artificial heart valve). They told me yes, to discontinue the warfarin(!?).
I faxed the doc a letter about this. He then admitted my husband to the hospital for the procedure .

In your shoes, I would write all this out for PCP, and see if DH can't see another cardio this week.

Please don't rule out ER.
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