1. < Heart & Blood Health

Heart Failure

Posted by shawnb2020 @shawnb2020, Sep 9, 2020

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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

shawnb2020 | @shawnb2020 | Sep 10, 2020
In reply to @maddie3211 "Hi Shawn, that seems like a long time to get insurance to approve that visit. Have..." + (show)
@maddie3211

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

Jump to this post

@maddie3211 I don't know, thats just what Mayo told me when they made the appointment. That i would need my doctors referral and that it would take 2 weeks from there before it all cleared out. I did leave a message with my doc right after getting off the phone with them, his nurse returned the call and said that she would have a conversation with him and get back to me. I also mentioned about my continuing pain and when i should return to the er since the last time i was there they gave me a script for Vicodin for pain and told me i should expect it and that unless i hit 10\10 there isn't much to do and that the 10\10 would probably mean another HA was coming on. I mean it's bearable but just that. It's about a 7\10 currently and i've been learning to deal with it until i can get in and hopefully get some answers eventually.

REPLY
Mentor
Dana, Volunteer Mentor | @danab | Sep 10, 2020
In reply to @shawnb2020 "Well let me start with thanking everyone who has taken the time to respond so far...." + (show)
@shawnb2020

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

Jump to this post

@shawnb2020 Hi and i am also curious why so long when i went to Mayo Phoenix it was a referral from my Cardiologist and i actually went direct by Ambulance. Now i had to wait for the insurance approval for my transplant but they started the process just on my doctors referral. At first it was only an evaluation and i went home after the eval which was inpatient but my symptoms got worse and i went back thru the Mayo er and never left until it i ended up with my transplant. But during that period waiting to get approval from the Insurance i was already at Mayo. Now at the time i had Blue Cross Blue Shield i don't know if that made any difference or not. So my advice would be to go to the closest ER whenever the symptoms appear. I was already an established patient with a history of Heart issues. Im wondering now if my cardiologist at the time pushed it thru. I'm not sure about that part. Hang in there it will be worth it. I am so thankful for Mayo and what they did for me.
Have a Blessed Day
Dana

REPLY
scottij | @scottij | Sep 11, 2020
In reply to @amandaa "Hi @shawnb2020 and @sallygg1, I wanted to welcome you to Mayo Clinic Connect glad you could..." + (show)
@amandaa

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.

Jump to this post

@shawnb2020 and @sallygg1
Welcome indeed.
Best always,
s!

REPLY
scottij | @scottij | Sep 11, 2020
In reply to @shawnb2020 "Well let me start with thanking everyone who has taken the time to respond so far...." + (show)
@shawnb2020

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

Jump to this post

I have never like responses that start with "I know what you are feeling" because we can never understand what pain means to you both physically and the clear frustration that you are experiencing emotionally. I can tell you that I had good care from many doctors but I never felt hope until I walked into Mayo. The advice I got was consistent and I felt better while waiting for my transplant which happened 8 months ago. My heart was "totally shot" (apparently a medical term). I had similar palpitations as a result of my heart trying to catch up to the needs of the body. I also don't want to minimize your feelings on your EF number. I will share that it is just a number and to not read too much into it. Mine was at 9% and I walked 14,000 steps the day before my transplant.

REPLY
1 reply
shawnb2020 | @shawnb2020 | Sep 12, 2020
In reply to @scottij "I have never like responses that start with "I know what you are feeling" because we..." + (show)
@scottij

I have never like responses that start with "I know what you are feeling" because we can never understand what pain means to you both physically and the clear frustration that you are experiencing emotionally. I can tell you that I had good care from many doctors but I never felt hope until I walked into Mayo. The advice I got was consistent and I felt better while waiting for my transplant which happened 8 months ago. My heart was "totally shot" (apparently a medical term). I had similar palpitations as a result of my heart trying to catch up to the needs of the body. I also don't want to minimize your feelings on your EF number. I will share that it is just a number and to not read too much into it. Mine was at 9% and I walked 14,000 steps the day before my transplant.

Jump to this post

@scottij First I would like to say I appreciate the way you worded your response. From there, it's not so much that I'm feeling any certain way about my EF I'm just basing my opinion from what other doctors have told me and from what I have read (and was able to understand lol) online. That usually anything under 30 is something to be concerned about and that after my second the doc I dealt with in the hospital refused to let me leave without a life vest. I suppose it wouldn't bother me so much if I was feeling "normal". Just over a year ago I was working 10-12 hours a day in usually outdoor or shop conditions and now I'll wake up at 7:30 for my morning handful of pills and by 10-11 I'm falling asleep where I'm sitting. Things I have always enjoyed doing just seem to take to much out of me to even want to bother. Even just walking around the house I feel my chest start pounding (really don't even need to be walking, has done it twice just typing this) and it's like hard to keep my eyes open. So I know EF is just a number and there are many different factors that will fall into how I feel no matter what that number says. But yes it does get frustrating. I'm not sure if mine is "totally shot" since they haven't told me much of anything. First I heard of heart failure was when the info packet from the company for the new pill i got put on a couple of weeks ago described it as only being used for heart failure and when I brought it up at my next visit he said yes that is why he gave it to me. Almost like I was supposed to know from his 2 minute phone call when he told me the result of my viability test was no viability and to keep my next appointment 2 weeks from then so he could explain it more which consisted of him telling me that whats done and dead is done and dead and that going back in would make no difference and other then the new med there wasn't anything he could do about it. Which is when i decided to seek out Mayo's opinion and help.

REPLY
View MoreView Less
Please sign in or register to post a reply.