Most Recent Messages in Conditions, Meds & Tests

Sotalol

Hey everyone! I'm back for more advice and personal experiences! Quick run down, at age 29, I was diagnosed with inappropriate sinus tachycardia, had an ablation done and 2 days later had to have a pacemaker put in because my heart rate was in the 20's. Did great after getting settings adjusted a few times. A couple of years later, I was diagnosed with NSVT. Started metoprolol for that and it has worked so far. I am now 36 and a few months ago, I began having some weird symptoms....

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Anyone else with HFrEF (Heart Failure with reduced Ejection Fraction) have trouble keeping BP up, but lower extremity edema down?

I am in this constant battle of trying to get my systolic over 100mmhg.  On 80mg furosemide, middle dose entresto (sorry can't remember what the numbers are but it's the middle out of 3) twice daily, 25mg spirolactone, 5mg ivabradine 3xday.  After raising my dosages of entresto and ivabradine a couple months ago my bp tanked again.  Now I average 90mmhg sometimes dropping in the 80s.  At which point I assume I have lost too much fluids so I drink water all day, but...

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Sleep apnea and PM.

Hello all,

Received my PM 1/19/2021

I just had a sleep apnea test . (two day home test)  I requested it due to my diagnosis of SSS.  I heard sleep apnea can cause isssues with your electrical system.

Sure enough it came back that I have severe sleep apnea.(AHI 52.9)  Now I wonder if this was the issue all along.  Any one have a pm implant due to sleep apnea? 

On the test result it stated that my HR lowest reading was 38.  My pm i...

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beta blockers

Hello everyone,

 

How is everyone doing? I just wanted to make a quick post too see if anyone has had similar issues too me. I have been on 80mg of Nadolol now for 4 months for issues with non-sustained vT and anxiety. 

For a really long time now i have felt tired, drowsy and had really achy, tired legs, all everyday for quite a while. I think this could be related to the medicine (not sure if achy legs could be caused but maybe). Has anyone else experienced this o...

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pm device

what does jt mean if. you feel. your heart beating  fast

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good morning

concerning sleeping.   kidney not working to well.   and was told to only take tylenol. felling better. every day. after 2 months from pm implant have a good day

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Genetic Testing

Has anyone here had genetic testing for heart block? I finally had my appointment with the inherited cardiac conditions team today (1 year later than it should thanks to covid) and they want to carry out genetic testing, despite it potentially being non-beneficial.

I am wondering what genes can cause heart block?

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p m device

thank you all for your answer  about my bedside devise. mine is a biotronic no buttons. they tell everything is ok. if anything wrong they

will advise. still need to know how it works. again thanks to all

 

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Jardiance

I am about to start jaurdiance in addition to my many other HF meds.  I am not diabetic and have HFrEF.  Has anyone taken this medication for HFrEF that was not diabetic?  If you have did it improve how you felt? We're there side effects? And what "reasoning" did your doctor give you for starting the medication (if they gave you one)?

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Echo Accuracy

I am going for my annual echo on Thrusday. Just wondered how accurate echos arre in general.  Mine as fluxuated between 42 and 28 the last few years and has gone up and down and up again. I just do not want to freak out if it goes down again.

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CPET results (looking at you slewyn and crustyg)

So I got my complete CPET results (done for transplant consideration and prognostic marker). I saw the advanced HF/Transplant doc today, he says it's time to start talking about transplant (which I thought was funny because clearly we are already talking about it, it's why we ordered the test.  Some of my results came back better than expected some worse so I am not sure where I stand really.  He drew blood today for antibody testing and pro-bnp as well.  Anyways the su...

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LQTS Genetic Testing and Ongoing Care

Hi Friends!

Does anyone have experience receiving care at Stanford, Cedar Sinai, or UCLA? If so, would you be willing to comment on your patient care experience? Possibly recommend a physician?

Also, has anyone run into issues getting insurance to pay for genetic testing? If so, do you have any tips?

Thanks in advance! 

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Beta blockers

Has anyone had trouble with beta blockers. Whenever I take them my stomach is a mess and I get very sleepy and sluggish. I hate them but don't know what to do, I have to say I have trouble with most medications stomach wise and wonder now if it could be an intolerance to a specific ingredient

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CPET

Does anyone know if a cpet is accurate if you are paced.  I'm mostly curious because they did not change my settings for the test so I went into pacemaker weinkebach before I hit anerobic threshold.  I am pretty sure they use you max heart rate to calculate you VO2max, and mine would show an artificially low heart rate due to the wienkiebach(I am sure I prob misspelled that twice). I had to show it to the nurse post test and explain because during the test she exclaims "wow...

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Medications

Before my icd was put in back in November, my cardiologist prescribed me entresto metoprolol. Well I just checked the drug interactions between the 2, I'm shocked the risk of death is high and there is no reason why it stated. The interaction between entresto and spironolactone is kidney failure, well my cardiologist hasn't done a blood or urine test. My cardiologist (nevada heart and vascular) considered the vast nevada, so WTF. My ct results came back and everything is good accordin...

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Problems

Had pacemaker implant Oct 2020 and have had at least 6 adjustments! Having dizziness and feeling that my heart is beating loudly and weakness feelings. Asked nurse to check if any events had shown up from the monitor that is by my bed! All looked ok she said! Why am I getting these symptoms  if nothing is showing! They come on with no warning and I am not doing any strenuous activities. The reason for my pacemaker is bradycardia and sick sinus syndrome! This is a scary situation for me!...

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Semaglutide

Anyone here had experience of Semaglutide? I've been offered a slot on a trial (double-blind) on a "Research Study to Investigate How Well Semaglutide Works in People Living With Heart Failure and Obesity (STEP-HFpEF)" and am inclined to take it.

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Will they let me complete CPET test if I start having NSVT?

Hello all,

Yes I know I have been a question maniac lately and I apologize!  I just have a lot going on, trying to talk to my partner about stuff is like trying to explain calculus to a five year old.  He is smart just doesn't understand all the cardiac stuff, y'all are my people!

I got my CPET moved to the 16th, but I got curious on whether or not they will cut me short if I start having runs of NSVT?  I really need the data from the test as a prognostic ma...

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Unexpected side effect of weight loss -- just venting

So, I saw the Heart Transplant team last September and they said I pass all their tests for progressing to the next stage of assessment except for my BMI (and eliminating amyloidosis as a cause of the problem). I needed to lose 6kg (13lb) and be signed off by the National Amyloidosis Centre [NAC] before they would move me on. 

Not a given I'll decide to go for it -- major surgery, and I'm not sure I've got the support they want -- I live alone for example 75 miles from...

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Not sure what to think

Warrning long post but I need advice. I am a 41 y/o female who was sent to a cardiologist for abnormal EKG and elevated heart rate at resting. So echo cardiogram, stress test, holter monitor came back normal. King of hearts showed that I had a resting heart rate of 112. The cardiologist at the time decided to refer me over to an electrophysiologist. With that appointment the whole 5 seconds he spend in the room stated my blood pressure was to low and if I can get my blood pressure up then my...

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You know you're wired when...

Your old device becomes a paper weight for your desk.

Member Quotes

I am not planning on letting any of this shorten my life. I am planning on living a long happy battery operated life. You never know maybe it will keep me alive longer. I sure know one thing I would have been dead before starting school without it.