Heart Failure

Posted by shawnb2020 @shawnb2020, Sep 9 1:02pm

So I'll try to make a long story as short as possible… Over the last 14 months I have had 3 heart attacks and have been in a handful of times for what felt like another one but they say no. During my last overnight that wasn't a heart attack they decided to do a test I hadn't done yet. It showed a "dead spot" as was explained to me. A week later they had me do a 2 day "viability test" which I included the results page from. Basically from what I understand and they way it was explained to me was that there is nothing they can do and that I should expect to deal with the pain for the rest of my life, however long that might be. Hence why I've sought out another opinion from Mayo but wont have my first appointment for a little more then 3 weeks from now. So i came across this group while looking through the website as the suggested during my appointment call and thought maybe somebody here might have some insight into this since looking around online almost requires a medical degree to understand and my current doctor isn't much help beyond there's nothing he can do for it. I spend most days in pain, like it feels like i'm having another and it's getting old fast. So if anyone has any insights or tips on how to alleviate any of it or tricks or can just explain to me in plain english why i should expect to be in pain everyday just so i can justify it to myself and maybe will help. Guess i don't know what to expect, just a way to vent i suppose cause i know the family is already worried enough and don't want to put more on them.

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Were these Mayo Doctors? I don't know where you live but if they are not Mayo physicians, go el pronto to your computer to Mayo clinic.org and request an appointment. Go there! The clinic cardiologists work as a team. I know they can help you. My team helped me.

Liked by sallygg1

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@sallygg1

I'm new to "Connect" and have a recent synchronization device and defibrillator implanted. I'm curious to find out if others experience a feeling of the heart being in the throat, so to speak. It kind of feels like palpitations, not a feeling of shortness of breath. I also experience times when my heart pumping is visible through my clothing. I have a device check appointment soon, just curious to know if any of this is normal.

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I dont have the devices you have but I've heard of people with new equipment like you do have the same issues it just takes time for the devices to work themselves out good luck dave

Liked by sallygg1

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@rois4richo

Were these Mayo Doctors? I don't know where you live but if they are not Mayo physicians, go el pronto to your computer to Mayo clinic.org and request an appointment. Go there! The clinic cardiologists work as a team. I know they can help you. My team helped me.

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No this wasn't a Mayo doctor. My current doctor. Like mentioned in my post i do have an appointment setup for Mayo but it's not for another 3+ weeks. I'm hoping they will be able to help and that they can figure something out cause this constant pain is getting annoying.

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@shawnb2020 I wish you luck pain in your chest is bad I had it before my by pass good luck

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I'm new to "Connect" and have a recent synchronization device and defibrillator implanted. I'm curious to find out if others experience a feeling of the heart being in the throat, so to speak. It kind of feels like palpitations, not a feeling of shortness of breath. I also experience times when my heart pumping is visible through my clothing. I have a device check appointment soon, just curious to know if any of this is normal.

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Hi @shawnb2020 and @sallygg1, I wanted to welcome you to Mayo Clinic Connect glad you could join us. @sallygg1 as you will see I moved your discussion to the thread that @shawnb2020 created about Heart Failure. This method is to benefit both you and other new members who are suffering with similar problems and give you a chance to connect.

@shawnb2020, I wondered if you asked or if your doctor mentioned at all any type of device to help with the heart failure like Sally has or any medication to slow the process? And you might be interested in this discussion as well – Stiff Heart, diastolic heart failure – https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/
I would like to invite @scottij, @cynaburst, @annierae and @susikelley to the conversation.

@sallygg1, prior to your device did you have any of these symptoms or pain? You might be interested in the following conversation. It has a lot of information. Support Group for pacemaker recipients – https://connect.mayoclinic.org/discussion/pacemaker-recipients/

I would also like to invite @bevh, @susikelley, @danab, @fishinpete, @stubeckj70 and @maddie3211 to the conversation as well.

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@amandaburnett

Hi @shawnb2020 and @sallygg1, I wanted to welcome you to Mayo Clinic Connect glad you could join us. @sallygg1 as you will see I moved your discussion to the thread that @shawnb2020 created about Heart Failure. This method is to benefit both you and other new members who are suffering with similar problems and give you a chance to connect.

@shawnb2020, I wondered if you asked or if your doctor mentioned at all any type of device to help with the heart failure like Sally has or any medication to slow the process? And you might be interested in this discussion as well – Stiff Heart, diastolic heart failure – https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/
I would like to invite @scottij, @cynaburst, @annierae and @susikelley to the conversation.

@sallygg1, prior to your device did you have any of these symptoms or pain? You might be interested in the following conversation. It has a lot of information. Support Group for pacemaker recipients – https://connect.mayoclinic.org/discussion/pacemaker-recipients/

I would also like to invite @bevh, @susikelley, @danab, @fishinpete, @stubeckj70 and @maddie3211 to the conversation as well.

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Good Morning….Last Aug. 2019 I suffered an A-FIB. Just like your describing…my heart was beating out of control and I could feel it. My arms were weightless while my heart was beating like s drum…. I had pain in my neck and thoat. I called the EMT after 2 days of this issue. My physician stated my heart had gone into A-FIB…After several days trying different medications my physician jump started my heart back to normal. My heart responded immediately.

Today, I am on Entresto and my heart feels great once again.

If your heart is beating abnormal take it from me, go to the hospital immediately! The longer you wait the more damage to your heart. This is a life and death situation that needs immediate attention. I learned a valuable lesson. I will never wait two days or an hour to get immediate attention…I love myself to much to allow this to happen again.

Good luck!! Maddie

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Thanks for the vivid description which will help us all recognize it if should happen to us!

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Hi, do you have a pacemaker/dyfibulator? Has your ejection factors always been that low…for me my levels were 12% in 2005 and now they are 50%. They did drop to 36% when my heart went into A-FIB but rebounded back.

So, do you have
a whole in your heart? Did not understand completely? Maddie

If this helps don't give up their is a doctor that specializes in this kind of issue. It takes patients to do the research…I know for myself I changed doctors 5 times…and I found the right one….

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Have you considered a visit to Cleveland Clinic? Both Mayo and Cleveland are awesome, but I say start bugging them to get you in.

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Since I'm new to this group, I'm learning how to navigate this page. I'm not sure who I am responding to, but the person who is waiting 3 weeks to see someone at Mayo, I am a patient at Cleveland Clinic and they have been very quick to respond to any requests. They encourage patients to seek second opinions. The only advice I have, (which may be worth what you paid for it, nothing) is to seek out the internationally rated Cleveland Clinic.
My circumstances are sort of recent, though now I realize I've lived with symptoms for quite some time. I do have a left bundle branch block, with ejection fraction that was around 20%. Now I am "wired" and adjusting to the reality of what my hardware feels like. I go back to Cleveland for my first in-person device check next week, so I am making a list of questions. Thanks for responding……

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@amandaburnett

Hi @shawnb2020 and @sallygg1, I wanted to welcome you to Mayo Clinic Connect glad you could join us. @sallygg1 as you will see I moved your discussion to the thread that @shawnb2020 created about Heart Failure. This method is to benefit both you and other new members who are suffering with similar problems and give you a chance to connect.

@shawnb2020, I wondered if you asked or if your doctor mentioned at all any type of device to help with the heart failure like Sally has or any medication to slow the process? And you might be interested in this discussion as well – Stiff Heart, diastolic heart failure – https://connect.mayoclinic.org/discussion/stiff-heart-diastolic-heart-failure/
I would like to invite @scottij, @cynaburst, @annierae and @susikelley to the conversation.

@sallygg1, prior to your device did you have any of these symptoms or pain? You might be interested in the following conversation. It has a lot of information. Support Group for pacemaker recipients – https://connect.mayoclinic.org/discussion/pacemaker-recipients/

I would also like to invite @bevh, @susikelley, @danab, @fishinpete, @stubeckj70 and @maddie3211 to the conversation as well.

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Thank you, Amanda, in 2008 I experienced palpitations and some mild discomfort which I thought was indigestion..I did get an ultrasound of my heart and was told I have a left bundle branch block..I was prescribed blood pressure med and sent on my way. I did not receive much in the way of explanation or education. In 2017 I felt similar sensations, went to the ER, tested and referred to cardiologist locally. I saw that doctor and he requested that I do a one year follow up appointment. In 2019 I again went to the ER with palpitations. This time I was told that I had fluid around my heart, which ultimately led to a internal heart test, and the term "heart failure". I ended up at Cleveland Clinic, which is closer to my home than Mayo, though I have great respect for Mayo. Now that I have my device installed I am continuing to learn how my body reacts. Thanks for helping me get connected..

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@rois4richo

Were these Mayo Doctors? I don't know where you live but if they are not Mayo physicians, go el pronto to your computer to Mayo clinic.org and request an appointment. Go there! The clinic cardiologists work as a team. I know they can help you. My team helped me.

Jump to this post

Call and get the attention of Mayo staff.

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@davej

I dont have the devices you have but I've heard of people with new equipment like you do have the same issues it just takes time for the devices to work themselves out good luck dave

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Thank you

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Well let me start with thanking everyone who has taken the time to respond so far. Now to try an answer everyone and everything. At this point i don't have devices. My previous doctor had put me on the life vest for about 2-3 weeks after my second HA. I went for a follow up echo and he said i made it past the ef needed to require it and to send it back and that he would see me in a year even though i was still having problems. So i found the doctor i have now and he said that he would have left it on me for a while longer and a week later i had my 3rd HA. They added another stent and sent me on my way. Have continued to have pain and "palpitations" since. I went back to the ER about a month ago cause they were getting worse, they kept me overnight and did a test i hadn't had before and said they saw the dead spot that the echo had missed. About a week later they had me go for the viability scan (the report is the attached picture) which i was told i was in heart failure and that there was nothing he could do for me but give me a new medication called Entresto which he said might help improve my numbers but that if after a few months it didn't we might discuss the life vest again. But i have read that anything under an ef of 30 is considered high risk for "sudden cardiac death". Topped with these "palpitations" which at times get weird, like it's beat…. beat…beat…beatbeatbeatbeat…………….beat…beat…..beatbeatbeatbeatbeatbeatbeat……………………………………..beat…………beat and then back to normal.So i was told by the last er doctor to seek out mayo or cleavland (mayo being closer to me) i sent the request and all the history. They set my appointment 3+ weeks out cause my doctor has to put in a referral or my insurance wont cover it. Otherwise i'm sure they would have gotten me earlier. I know this was long and i'm sorry and hopefully i answered everything so far. If i missed something feel free to ask again and i'll be more then happy to answer

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