Back on the merry-go-round, or just caffeine?

[Protimenow]

Yes. A roller coaster. I commented on this a few posts back.

I'm still a bit skeptical about the 1 liter limit -- I have no edema, my MD said nothing about limiting fluid intake, and only the PA insisted on this.

 

[gerrychuck]

Yes. A roller coaster. I commented on this a few posts back.

I'm still a bit skeptical about the 1 liter limit -- I have no edema, my MD said nothing about limiting fluid intake, and only the PA insisted on this.

I'm a little puzzled by the reaction to your EF; falling below 40 only just gets you into the "moderate" dysfunction zone, and all the internists and cardiologists that I've seen, including the heart function clinic that follows me now, only start bringing up the sudden death spectre with EF's below 30. My brother has an EF of 40 and rides 100 miles/wk on his road bike, or hits at least 2 high intensity spin classes every week, all at age 67. Obviously, getting your numbers higher is desirable and it sounds like you are working in the right direction. If you are using meds off label I assume you're already on the holy trinity of beta blocker, ace inhibitor and spironolactone to improve EF (I haven't reviewed the whole thread, sorry!) If not, I would certainly be asking, as that is the standard first line therapy. Likewise, restricting fluid intake to that extent seems much more in keeping with the severe range of dysfunction/failure than barely into moderate unless your BP is really high.

Several things about what you're being told that are head scratchers based on my own experience (which, of course, is individual to me and may not accurately reflect your situation).

 

[Protimenow]

I got this '1 liter' thing from a Physician Assistant. I've discounted what she told me, and I'm drinking water when I'm thirsty.

I have no edema in my legs. My cardiologist made no mention of fluid restrictions.

I'm taking Farxiga - it's actually not off label - the site shows that one of the indications is use for raising ejection fraction. I've only been taking it for a few weeks. I think it's helping. Another echo in a month or so will possibly provide better results than those in my last echo.

I also take Verapamil and Atenolol (and have been for quite a while).

 

[Protimenow]

The roller coaster ride continues....

For a while (after increasing my sodium level by eating an occasional hot dog), my PVCs were COMPLETELY GONE.

Then, a few weeks ago, I developed shortness of breath - sometimes pretty severe.

Activities that I used to be able to do without a problem have become a problem for me.

My cardiologist increased the rate on my pacemaker from 70 to 80, in an attempt to stop my PVCs, but this only made things worse - now, after every two or three beats, my heart stops beating effectively (PVC? Bigeminy?). I can't do much now. I don't even want to go to the store.

This sucks.

Last Friday, my cardiologist said I should go to the E.R. for a chest CT. While on the monitor, it showed many trigeminy and paired PVC events. My Chest CT was good - it didn't show ANY problems.


So now the cardiologist wants to reset my pacemaker to 70 - still a problem, but not as bad as 80 bps caused me.


I'm not sure where things will go from here.


According to a rhythm specialist at UCLA, my PVCs are not a result of electrical issues - cardiomyopathy is causing them.

I may end up (yeah END UP) struggling with the arrhythmia until my heart stops beating. I may have to deal with shortness of breath because of poor circulation until something - heart or something else - finally kills me.

I think I may have to do some of the things that I've been putting off for a long time.

I'll report more later, if I'm still around to do this.

 

[Protimenow]

I saw my cardiologist today.

He set my pacemaker to 90 bpm. Probably a bit high, but it cut out my PVCs.

I'm feeling somewhat better now - but he cautions that I shouldn't keep it that high for more than a few days. He says that the higher rate may help my heart get stronger, and possibly reduce the PVCs.

I'll cut out the 1/4 tsp. of instant coffee that I add to my morning Ovaltine, and see if this also makes any difference.

By Monday, I may know more - if I can stay at 90, for example, or if the extra 'exercise' that my heart has been doing will strengthen it enough that 80 or 85 keeps the PVCs from happening.

What fun!

 

[Eva]

Sorry for what you’re going through.
My two 2-cents advice:
1- try to stop the Ovaltine for a few days and see how your heart reacts! My heart doesn’t tolerate it!
2- Check your oxygen level, mainly during sleep. Since my pulmonologist prescribed an oxygen concentrator for me that I attach to my CPAP, I’m feeling much better. My sobs are not as bad as they had been during the past few years!
My 02 level used to drop during my sleep to 88 and 82 sometimes and I had no idea until I bought a gizmo to check it. My sleep doctor/pulmonologist then prescribed an oxygen concentrator for me. And despite my complaints, no doctor thought about oxygen level drop during the night!

 

[carolinemc]

I saw my cardiologist today.

He set my pacemaker to 90 bpm. Probably a bit high, but it cut out my PVCs.

I'm feeling somewhat better now - but he cautions that I shouldn't keep it that high for more than a few days. He says that the higher rate may help my heart get stronger, and possibly reduce the PVCs.

I'll cut out the 1/4 tsp. of instant coffee that I add to my morning Ovaltine, and see if this also makes any difference.

By Monday, I may know more - if I can stay at 90, for example, or if the extra 'exercise' that my heart has been doing will strengthen it enough that 80 or 85 keeps the PVCs from happening.

What fun!

On the coffee, it is caffinated or decaf.? May want to change to decaf, it will help the heartbeat.

 

[Protimenow]

Carolinemc and Eva - thanks for your input.

I use an Apple Watch 7 to track my sleep, breaths, and blood oxygen levels. I'm not sure that I have a lot of confidence in its determination of this factor during my sleep - last night, it showed 98% oxygen levels, during the last month, it varied from low-to mid 90s, to higher values. I get the feeling that it may be underestimating, depending on how I'm wearing my watch when it tests my blood oxygen.

I've been drinking Ovaltine for years - it doesn't seem to effect my heart rhythm. For a few months, my PVCs were gone - now, they're back. I'm not sure why. I don't think caffeine has anything to do with it.

I used 1/4 - 1/2 tsp of instant cold brew coffee in my Ovaltine, but stopped. I doubt there was much caffeine in the coffee. After dinner, I have a few belgian cookies - these have some chocolate in them - with my wife. These may have some impact - I didn't have this problem until I started eating them - Maybe I'll convince my wife that I don't like them (probably NOT implicating an effect on my heart rhythm) and stop eating them. Maybe staying away is all I need to get my rhythm back.

FWIW: did you know that 'decaf' still contains caffeine? It just contains LESS than full caffeine coffee.

 

[carolinemc]

Carolinemc and Eva - thanks for your input.

I use an Apple Watch 7 to track my sleep, breaths, and blood oxygen levels. I'm not sure that I have a lot of confidence in its determination of this factor during my sleep - last night, it showed 98% oxygen levels, during the last month, it varied from low-to mid 90s, to higher values. I get the feeling that it may be underestimating, depending on how I'm wearing my watch when it tests my blood oxygen.

I've been drinking Ovaltine for years - it doesn't seem to effect my heart rhythm. For a few months, my PVCs were gone - now, they're back. I'm not sure why. I don't think caffeine has anything to do with it.

I used 1/4 - 1/2 tsp of instant cold brew coffee in my Ovaltine, but stopped. I doubt there was much caffeine in the coffee. After dinner, I have a few belgian cookies - these have some chocolate in them - with my wife. These may have some impact - I didn't have this problem until I started eating them - Maybe I'll convince my wife that I don't like them (probably NOT implicating an effect on my heart rhythm) and stop eating them. Maybe staying away is all I need to get my rhythm back.

FWIW: did you know that 'decaf' still contains caffeine? It just contains LESS than full caffeine coffee.

No, it does not. Read the label and learn. I drink decaff coke and root beer, since there is no caffeine. Label reading does help. And decaf is easier on the heartbeat. Even decaf coffee is decaf.

 

[Protimenow]

I read labels.
I'm not talking about coke or root beer.

I haven't bought decaf coffee for years - but the last time I checked it was ''97% caffeine free.' I don't know that they've been able to make a coffee that's 100% caffeine free. According to what I've just checked, they still haven't removed ALL caffeine from coffee. There IS a coffee that is 99,9% caffeine free - but there is STILL caffeine in coffee. I don't know if what you're drinking is done using the process that removes most of the caffeine from the beans, but there is STILL SOME caffeine in decaf. Read the label.

It's possible (though not entirely likely) that my arrhythmias were caused by caffeine (or that caffeine contributed to it). The instant coffee that I put into my Ovaltine is about 10 mg - if that much - about 1/4 what you get in a cup of coffee. I've been eating Belgian cookies with my wife for the past month or two (roughly the same time that I had shortness of breath), and it's possible that the chocolate on, or under, the cookies may have had enough Caffeine to cause my arrhythmia. No more of those cookies for me....

Coke and root beer are easy -- coke ORIGINALLY had cocaine in it (a real pepper upper), but when they were forced to remove it, they added caffeine for a lower level lift. Removing it was easy - they just stopped putting it in.

 

[Protimenow]

I stopped Ovaltine. It made no difference, although I haven't gone back to it.

I've been struggling (suffering?) with lack of energy and shortness of breath for months.

I finally got to see my cardiologist today.

My ejection fraction is between 30 and 35%. He said I should get a pacemaker 'upgrade' to a biventricular device. Apparently, this is what a person with an ejection fraction like mine needs.

I had a venous test, 'special' ECG, and Chest X-ray. I'll have the device implanted next month.

I'm starting low dose Lasix for CHF that's affecting my lungs and increasing my magnesium dosage.

Fun, Fun, Fun.

 

[dornole]

Ugh. CHF sucks. I’m sorry. I hope the Lasix brings some relief. I hope the biventricular pacemaker does more. My father in law has one and it made a huge difference.

 

[Protimenow]

Thanks Dornole.

I asked the doctor if I would feel better after I get the Biventricular device and he told me that he wouldn't suggest anything if it wasn't going to help.

These are supposed to make a big difference -- just like your father-in-law is experiencing.

My cardiologist also told me why Furosemide is called Lasix -- it LAsts SIX hours.

 

[carolinemc]

Thanks Dornole.

I asked the doctor if I would feel better after I get the Biventricular device and he told me that he wouldn't suggest anything if it wasn't going to help.

These are supposed to make a big difference -- just like your father-in-law is experiencing.

My cardiologist also told me why Furosemide is called Lasix -- it LAsts SIX hours.

My lassix lasts 4 hours, depending on how much water I am drinking in the morning. Take it in the morning, not at night.

 

[Protimenow]

The thing about six hours wasn't a joke (at least it didn't sound like one when he said it).

The first day, I didn't have any effects -- today, it seems to be working.

I can inhale more deeply now. Nice.