Connect
Heart Failure
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Heart & Blood Health Support Group.
Connect
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......
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..
Call and get the attention of Mayo staff.
Thank you
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
-
Like -
Helpful -
Hug
1 ReactionSmart Girl, ask all the questions...when they check your device, they are checking if you have additional fluid either around your heart or lower extremities. They may or may not adjust anything with the device..they adjust the ryhmum of the pacemaker with your heart. They may lower or up the speed..you don't fell anything. They lay pads on your stomach, legs and chest.
On June 11th I had my 3rd implant and the doctor I selected was a specialist. He is with Riverside Hospital in Columbus Ohio, Dr. Amen and boy is he educated concerning the function of heart...
When your doing your research for a specialist look at their education, where they studied and who they studied under. You can get great information. I wanted a physician who specializes in A-FIB and I found him, DR. Amen. Good luck and don't give up! Your worth this life! With Gods Warm Blessings, Maddie
Is it your cardiologist that has to make that referral? If not, call your primary and push the issue..how far away are you? Maddie
I think it's the cardiologist that has to put the referral in. I did bring it up to my primary though. But the way it was explained to me was that once it's put in it will take at least 2 weeks to clear through insurance which is why they set it as far out as they did to make sure everything was done before hand. As for distance, it's about a 4 hourish drive from me to get to Rochester Mayo
Hi @sallygg1 If you hit the reply right under the person's comment and then use the @ symbol with there name like I did with you, it will not only alert the person you are responding to, but it will link to the comment you are responding to so others can see your reply. 🙂
Hi Shawn, that seems like a long time to get insurance to approve that visit. Have you contacted your insurance? I worked for two major primary insurance companies in the past and our responds back to the insure was less time. I would suggest you call them and let them know you need immediate care and the physician has thrown up his hands. I have heart failure and was diagnosis in 2005 with Cardiomyapathy. My ejection levels were 12%. But no physician threw up their hands on me but worked to solve the problem.
The insurance company will have suggestions. If the representative doesn't ask to speak to supervisor. She'll find the answers. Let me know Maddie
-
Like -
Helpful -
Hug
1 Reaction