Most Recent Messages in Conditions, Meds & Tests

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Milrinone?!

So for any of you who follow my posts here is an update:

Went for my right heart catheterization yesterday, upon arrival my blood pressure was 84/54 which is about where it has been hanging out over the last 4 weeks, despite going back to the lowest dose of entresto 2 weeks ago.  My heart cath revealed a Fick cardiac index of 1.5 and 1.75 by thermodiolation.  My heart pressures were all extremely low, one was nearly 0.  So....

I was admitted to start milrinone infus...

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Sick Sinus Syndrome

I have recently been diagnosed with asymptamatic SSS. My longest recorded pause was 2.6 seconds.

The doctor told me that if the pauses last longer than 5+ seconds he would recommend a PM. I was wondering what time period I might be looking at? I know my SSS is going to get worse and everybody is going to be different, but is it going to take months or years?

I've been keeping track of my pauses with a great new app I have and so far I haven't exceeded 2 seconds. But I...

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Treatment for a-fib

I had my follow up office visit (3 month), and since I had an appointment scheduled to check my pacemaker next week, they went ahead & did that as well. I was very happy to tell my docotor that I was feeling good--no dizziness at all, and even symptoms of a-fib seem milder & less frequent. I was recently prescribed a low dose of metoprolol, which seemed to help me turn a corner.

A few hours later, his office called to tell me that my a-fib is actually poorly controlled...

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MRI

Hi! It's been a long time since I've been on the site- mostly because things have been going well since I had my first PM implanted in 2007. I had my device changed out in 2018 to one of the Medtronic MRI compatible devices and my leads are the originals that were placed in 2007.  

So my question is "what good is it to have an MRI compatible device if the leads haven't been changed?"  I'm having some back problems that are usually checked by MRI,...

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Sleep problems?

Just checking if anyone is or has had a problem sleeping after the procedure? I have been having hard time sleeping, I sleep about 2 to 3 hours a night, and then after two or three nights like that, I sleep 6 to 7 hours. It is a vicious cycle, I feel tired and in need of rest due to lack of sleep.

Anyone else experienced this? I am also experiencing fast heart rate and I read that Plavix (blood thinner) can cause that, anyone else is experiencing this?

I appreciate any comments of...

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Signs of low cardiac output?

Hey all,

I go for right heart catheterization on the 18th to check my cardiac output and other values.  Doc says if it is below 2 he will start me on inpatient inotropes.  I don't have signs of congestion except very mild lower extremity edema (but I am heavily diuresed).  So far my lab values aren't bad, creatine is 1.00 up from 0.7 3 months ago, and mildly low potassium.  Other than that everything is in normal limits.  I am curious if anyone has perso...

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mastectomy and pacemaker?

Hey ~ has anyone had a mastectomy since having their pacemaker placed? I'm potentially facing the situation right now and my PM is actually implanted sub pectoral so I don't know that it would be affected??

Anyone have any experience with this?

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Jardiance in non-diabetic HF patients.

I made a post about jaurdiance for HFrEF several months ago but my insurance denied my claim for the medicine. Well at last, and I have nooo idea how, my HF doctors staff got it approved for me (who knows maybe they just lied and said I had diabetes).  Anyways only day two so I can't tell y'all if it's working yet for my HFrEF, but I wanted to put a post up since this is a newer use for the medication and others may want to know about it later.

So far side effects are n...

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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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I feel so blessed to have this little gem implanted in me. When I think of the alternative it is quite overwhelming sometimes.