I think I have a new issue and it's name is A-Fib

[Bryan B]

I'm going to see my cardio tomorrow but given my symptoms that's what she thinks is going on. I saw my GP a week ago today for a follow-up (different issue) and my BP was 128/80 with a pulse of 72. These numbers are good for me for having them taken in a doctor's office. Then on Thursday I started feeling weak and became short of breath more quickly than I normally do. Friday I felt bad and slept most of the day. Saturday I was setting up the grill for my mom and almost passed out. Sunday I slept most of the day. Yesterday I slept in and watched a couple of movies. I started taking my BP on Saturday and have taken it around 20 times in the last 3 days. My BP is spot on averaging 118/76...BUT...my pulse has been averaging mid 130's!!!

I called my cardio yesterday afternoon and she called back this morning. She thinks I'm out of rhythm and that it's most likely being caused by a-fib. I'm going in tomorrow morning for an ekg (for those not old-school ecg).

Now comes the rant. I was initially accepted for financial aid for the surgery I need to repair my dilated aortic root and ascending aorta. Even before then my cardio had restricted me from working until I have the surgery. So when the organization supplying the financial aid called my surgeon to make sure he was willing to accept the amount they were offering to pay (medicaid rate) he told them that my case was not urgent and that he didn't place work restrictions on me, only lifting restrictions. So then my cardio sent written documentation that she had placed working restrictions on me until I have surgery and that it was her decision to make. Two months later I'm in a-fib, I haven't gotten a yes or no from the financial aid organization, and my surgeon left Duke and is now at The Children's Hospital in Denver.

End Rant

Let me see if I have this right from reading the forum for the last 6+ years.

I may go back into sinus rhythm on my own. If I don't my options are cardioversion or medication. Is that pretty much it or did I miss something?

Well looking at the bright side...if I end up with chronic a-fib that will make choosing a valve a lot easier if and when I finally have my surgery.

 

[Ross]

Man, you have the kind of luck I do. Are you sure were not related?

If heart problems don't kill us, the dang financial end of things will. I'm ready and have been for some time, to start printing invoices and billing these clowns for my time wasted talking to them.

 

[ALCapshaw2]

Brian - Do you have a Stethoscope?

If not, I highly recommend buying one (an inexpensive model is 'good enough') to listen to your Heart Beat.
It is pretty easy to pick up on an irregular heartbeat and that is an easier way to count your heart rate than feeling for a pulse.

For A-Fib, several of our members have good control taking Sotalol (generic form of BetaPace) which targets A-Fib according to my Cardiologist.

The Sledge Hammer of Anti-Arrithmyics is Amiodarone which works well but has a long list of Nasty Side Effects if taken in large doses or for a long time (many months). There is a new Amiodarone-Lite called Multaq that is supposed to have fewer side effects but it is Very Expensive. Sotalol is Cheap (and it works well with few side effects).

'AL Capshaw'

 

[tobagotwo]

Mine comes and goes. When it's bad, I've had a BP of 90/62 with a heart rate of 98 (not even close to your issue). Ventricle just doesn't get to fill. I can feel it then. Most of the time I can't feel it, although the fatigue, shortness of breath, and angina do make visits from time to time. When it's gone, I am almost nomal.

My cardiologist was less positive about options for my AFib. He said Sotalol works about 50% of the time, and has side effects that he thinks I won't like (I'm thinking man issues?). Forget Amiodorone. Multaq may or may not be similar in effectiveness to Amiodorone, it's like Amiodorone without the Iodine that raises merry heck with side effects. Either might be worth trying, but Sotalol usually requires hospitalization for starting out, which is expensive, and Multaq is an expensive pill. So you pay now or pay later. My cardio's a top-tier interventional cardiologist (type that does catheterizations), but he didn't seem that high on burning it out, either.

Mine was kicked off by being overprescribed with a Beta Blocker-Caclium Channel BP meds combination. I don't know if that caused permanent damage, or my already-expanded atrium just kept it going once it started.

It may go away by itself, but the longer it's there, the less likely that becomes. I hope those people who are/were willing to help, and whatever surgeon you wind up with now see how important it has become for your heart to be taken care of. Maybe it's time to start surgeon-hunting again and recontacting those people.

Best wishes,

 

[Bina]

Bryan, whenever I have researched arrhythmias, the only solutions presented were cardioversion/ablation, or meds.. Best wishes.

 

[Bryan B]

Well here's a "kick me while I'm down" scenario. While I was out today my parents got a call telling them that my appointment for tomorrow was canceled do to "an emergency" and I needed to call and reschedule.

Here's some more information on my symptoms. When I'm at rest I don't feel too bad. With any kind of exertion it feels like I have a washing machine in my chest. If I bend over for any length of time, when I stand back up I get really dizzy. I was hanging out at my buddy's house tonight watching a movie and I took my BP on his monitor. My first reading was 91/61 with a heart rate of 136. He took his and it was what he normally gets (around 120/75 with a heart rate in the mid 70's...he has no heart problems). I took it again later jokingly stating that let's see if I can break the 100 barrier with my BP. I got a reading of 105/70 with a heart rate of...you guessed it...136.

Out of 22 BP / pulse readings I've taken since feeling bad, I've had 20 readings with a pulse of 133 or higher...and they have been pretty consistent.

4 readings of 133bpm

10 readings of 136bpm

5 readings of 139bpm

1 reading of 145bpm

Average: 136.6bpm

The other 2 readings not mentioned was 1 reading of 75bpm and 1 reading of 99bpm??? It seems that my heart rate is pretty consistent at 136 which is about 60bpm higher than my normal average. I think I'm going to have to rattle some cages tomorrow and see if there is a cardio somewhere within the Duke staff that can see me and do a freaking EKG and at least diagnose me. I can live with the discomfort and inability to exert myself...I just don't want to throw off a clot while waiting to be seen. I've gone from taking a baby aspirin to taking a 325mg aspirin (not enteric coated) twice a day and I'm carrying about a half dozen regular aspirin with me to chew up if something feels "really wrong".

If not, I highly recommend buying one (an inexpensive model is 'good enough') to listen to your Heart Beat.
It is pretty easy to pick up on an irregular heartbeat and that is an easier way to count your heart rate than feeling for a pulse.

Al,

I know we used to have one around here but I'm not sure if we still have it. But when I try to do anything that requires mild exertion there is no doubt that my heart is not beating like it normally does. It feels like my heart is playing the bongos. As long as I move slow and I don't bend over, it's "there" but not too noticeable.

Mine was kicked off by being overprescribed with a Beta Blocker-Caclium Channel BP meds combination. I don't know if that caused permanent damage, or my already-expanded atrium just kept it going once it started.

Bob,

That is some interesting and useful information. They have me on a beta blocker, calcium channel blocker, AND an ace inhibitor right now to control my hypertension and slow down the progress of my dilated root (and ascending aorta). If I had health insurance I'm pretty sure I probably would have had surgery sometime last fall since my surgeon (excuse me former surgeon) felt like the sooner he repaired the dilated root the better chance there was he could save my autograft.

If heart problems don't kill us, the dang financial end of things will. I'm ready and have been for some time, to start printing invoices and billing these clowns for my time wasted talking to them.

Ross,

My appointment was for 12:30PM tomorrow and they didn't call and tell me my appointment was canceled until almost 5PM. I feel like I need to bill them for not giving 24 hours advanced notice.



I meant to mention...in case someone suggests that I go to the ER...I have no money and any appointments I have my parents pay for them. When I see my cardio at the Duke Heart Clinic they give me a discount for paying cash so an appointment (without echo) "only" costs around 80.00. I feel like I can only go to the ER if it's actually a real emergency, and I don't think an urgent care center would be able to help me. They could diagnose me and then they would either recommend going to the ER or going to my cardio asap.

 

[ALCapshaw2]

Hmmm....

I'm thinking you should be on Coumadin (or Warfarin which is cheap) or Lovenox injections (expensive) to protect you for clot formation.

The problem for you would be getting a Doctor or Coumadin Clinic to write the Rx and get you started which would include being tested and monitored.

'AL C'

 

[Ross]

Your between a rock and hard spot. Been there most of my life. There are ways to make things work, but man, you'll be paying the rest of your life using those routes too. Afraid I don't have any easy answers at this point. It comes down to money or health. Which is more important? That's as bad as asking which came first, the chicken or the egg.

 

[Bryan B]

While I was out today my parents got a call telling them that my appointment for tomorrow was canceled do to "an emergency" and I needed to call and reschedule.

Here is the emergency that caused my appointment to be canceled.

http://www.wral.com/news/local/story/7541298/

I didn't know her personally but I'm sure she had drawn blood from me in the past. The entire staff there is very friendly and helpful so this is very sad. My cardio won't be there tomorrow but I'm going in tomorrow for an EKG. They will fax the results to her and then she will call me. If it is a-fib she said she would probably start me on Coumadin (probably low dose along with aspirin) and go from there. I'm also hoping she will contact the "counselor" in charge of my case for possible financial aid and tell him that if it "wasn't an urgent matter" 2 months ago (according to my former surgeon) we reaching the "urgent matter" threshold now.

 

[Ross]

It's too bad that sort of thing is happening everywhere. Given the current economic situation in this country, were going to see a whole lot more people snap. People are running out of options and turn to violence. Yeah I know this was a relationship thing, but you can bet something boiled over.

You can do only what you can do. I just got off the phone after arguing for 2 months with Aultman and find I'm getting no help at all because I have a Medicare HMO. That's nice. Thing is, my medical expenses are killing us and within the year, I should be a Medicare/Medicaid dual eligible. Don't want to go there! I've got $1045 racked up in the last 2 months. Still waiting for the insurance to pay on the claims to see what ridiculous amount I owe.

Push as hard as you can and wait for the rebound I guess.

 

[Bryan B]

Well I went to my appointment today. My appointment was at 12pm and I got there at 12:05pm (hard to predict traffic from Cary to Durham). I left there at 1:05pm. In that hour's time I had a 2 minute EKG. They didn't even take my BP before doing the EKG to get a baseline on my heart rate. I did bring in all the readings I took over the last few days to fax over with my EKG. My cardio and my cardio's NP were not there today as the NP is only there M-W and my cardio is only there on Tuesday. My cardio's NP called and told me that they weren't sure if it was A-Fib or A-Flutter. She told me to keep taking a bit higher dose of Aspirin (1 tp 2 regular aspirin daily instead of 1 baby aspirin daily) and that Dr. Ward (my cardio) wanted to see me in the clinic on Tuesday (like I can afford 2 office visits in 5 days). It was interesting because although I felt better today than I had felt in the last few days, when I took my BP on my machine and my Mom's machine my pulse was still in the mid 130's. When I got home it was in the low 130's with one reading in the high 120's. I guess I have to do some research on A-Flutter to see what the difference in symptoms are (if any). I did tell her that I wanted Dr. Ward to call my financial aid counselor after Tuesday's appointment and tell him that my condition is worsening and she agreed that they would do that. She agreed that going into A-Fib or A-Flutter is most likely a result of my heart having to work harder as the aortic dilation gets larger, which in turn causes more leakage in my aortic valve as the dilation doesn't allow the aortic valve leaflets to close as tightly as the dilation gets worse. Left ventricular hypertrophy (also caused by aortic insufficiency) is another cause of A-Fib and/or A-Flutter.

I just got the call for dinner so I'll sum it up quick...this all sucks and I'm sick and tired of being sick and tired.

That's all for now.

 

[tobagotwo]

Aortic insufficiency means there is insufficient blood supplied from the heartbeat to completely fill the aorta. It's a term used most commonly in place of the term aortic regurgitation. I dislike that usage, because it can also be caused by aortic stenosis, so it's basely inaccurate. No one cares if I like the way it's used or not, though.

LVH is the enlargement of the left ventricle from intense, repetitive exercise or other stress (valve issues are particularly good at causing this). It can be a cause of aortic regurgitation, especially if it's non-concentric (uneven enlargement). If it's not an issue with the valve itself, it does seem more likely that the culprit is the distortion of your aorta from the dilation. It would affect the shape and size of the aorta at the valve, causing it to close unevenly.

I have similar result to yours when I bend over: SOB and sometimes dizziness, even angina. As my heart rate is nowhere near as high as yours, I can only imagine how much more debilitating it must be for you. It makes you feel very old and frustrated, angry that you can't do simple things without such a high payback. I sincerely sympathize with your pain.

Don't panic too much about not being on warfarin yet. The numbers from more recent studies I've been looking up for AFib show the stroke risk differential numbers to be substantially lower than the studies that were done in the nineties, before Coumadin went generic. The other kicker? All the studies of stroke risk from AFib were done on one type of cohort: patients recovering from bypass surgery. These groups already have an enhanced risk of stroke due to atheromas they are already proven to have, some of which remain after the bypasses. These deposits can lose small bits during the extra "sudsing" activity of the AFib (where the atrium contracts more often than the ventricle, often out of sync), and can form the basis for clots. So the risk exists, but is likely somewhat less than ballyhooed, if you've not got much in the way of deposits. Not sure why these studies were generally accepted, given the unusual risk groups used. Hard not to notice that warfarin clinics are good cash cows, though, with lifetime repeat customers. Viva home testing!

Hang in there, Brian.

Best wishes,

 

[Guest]

I'll sum it up quick...this all sucks and I'm sick and tired of being sick and tired.

*sighs*

I'm in that same boat right now ... albeit for different reasons.

Very sorry about all of this, Bryan. Thoughts/prayers coming your way, of course.....



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