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Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.
I had my appointment with the cardiomyopathy specialist. She changed my meds. Took me off Losartan and started Entresto. Took me off Toprol and started me on Carvedilol. Started me at very low doses with the goal of doubling every 2 weeks until I am at 25mg x2 of Carvedilol and 98mg x2 of Entresto. She said the 1st 3 days after increasing doses would be rough, but body should adjust after that. She prescribed Viagra as well, due to effects of the meds. Also ordered cardiac rehab. Is going to re-check cardiac function with an MRI. This will allow her to be able to see damage to heart muscle and possibly be able to diagnose a cause for the cardiomyopathy. She also said, if all else fails in determining cause, there are genetic tests that may be helpful. Insurance usually doesn't cover, and cost is usually around 2k. She was very optimistic of my regaining normal to high heart function, and being able to return to my profession. This is quite a radical difference from the original treatment plan of take these 3 pills and call me in 3 months. Still have an appointment with an occupational specialist.
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@fireguy8891 That sounds like great news, I'm sure having a treatment plan and a good outcome will reduce the stress. Thanks for the update. And I would also add thank you for what you do. It sounds like you really enjoy helping others as a firefighter
@danab I received a denial from my insurance for the cardiac MRI. It is expensive, and insurance deemed it not a necessary procedure. Just wanted to get your opinion. I do not think it will change my treatment regime, but should give me an idea of the condition of the heart muscle. Maybe pivotal in deciding how hard I can push my cardio without damaging heart further. I just wanted to see if you had any thoughts on this.
@fireguy8891,@danab– I've been meaning to weigh in on your thread for awhile and so finally have a chance.
Back in May of 14 was just another Monday, workday and I was working out 3x a week then for over 3 yrs.
I had a great workout (about 1 hr. cardio w/ 1/2 hr. weights). After finishing I headed home for a light lunch before heading back to work. Once home and after getting cleaned up I was about to sit down and eat lunch that my wife prepared. All of a sudden I started feeling flush and the pain started in my left arm and then moved to my chest. As much as I felt I was having a HA as quickly as it showed up with not even the slightest of earier signs I had to wonder if this could be a result of my workout?
My wife was concerned as of course I was as well. The pain was becoming extreme and so I ate several baby aspirin and we decided to jump in the car and run up to the ER, just a 20 minute ride. This was a bad idea & would not recommend it!
Skipping forward a bit after being admitted and not persenting HA even after all the typical tests given the Cardiologist told my wife & I that he was going to admit me and do a stress test in the morning. After getting my pain under control, but before moving me they brought in a Echo Tech and within 15 minutes he left the room and returned quickly with the Cardiologist in tow.
Everything from that point moved quickly and within an hr. I had a stent placed in my LAD which was 100% blocked.
I had what is referred to as The Widow Maker for obvious reasons.
I was told a few days later that they wanted me to enrol in the Heart Rehab program and being that it was on the same floor as the Cardiology dept. I felt as safe as I could be. Being that I was very used to different workout machines I found it easy to move in and being monitored made this so much more comforting. The slightest twich at that point seem to set me off, but everyone that worked there was wonderful. I found out that my EF was just above 30. I set out to change that and after completing the heart rehab I went back to my gym and picked up where I had left off other than dropping down in weights and time/intensity of my cardio.
As I was coming up to my 1 year anniversay my Cardiologist had another Echo planned before we met.
A week later when I met in his office I couldn't hardly wait to hear the results. I worked very hard and was fully expecting great results! Well, I received the news that there was no real change in my EF most likely from the damage to my heart.
I was very dissapointed! Damaged Goods is all I could think! I had set myself up for such different results and failed!
I continued to work out and purchased a monitor that synked with many of the equipement at the gym so I could keep tabs on my heart rate. Now after taking metoprolol I knew this was forcing my heart rate lower and in rehab I was barely breaking 120.
I continued building up the time & intensity of my cardio where over a year I could get to 135 for at least a third of the time.
Another year passed and once again I had a Echo and then met with my cardiologist only to find out there was still no change in my EF. He was not bothered by that as much as I was. He was very happy that I felt good and had continued to work, eat right and exercise. That winter I knew we planned to spend about a month in AZ in April so I decided that I would schedule an appt. at the Mayo Clinic in Scottsdale, AZ. for when we would be down that way. This was more about getting a 2nd opinion and I had heard so many positive comments here on Mayo Connect that I went ahead and got an appt. scheduled.
I got into more detail about this visit in an earlier post so I will skip ahead to say that as part of the battery of tests I received that day we ended with a stress echo and my cardiologist was right there in the room with me cheering me on. I got up to incline of 12 and a speed of 6.3 so I was clearly jogging at that point. He was jazzed as he watch the monitors on the wall. As I dropped down on the bed while they continued taking the pictures his comments were amazing!! That gave me such a rush of gratitude!
We met in his office at the end of the day and he told me that he would need to do a bit more work, but he was confident that my EF was more like 40-45. A month later he contacted me on the phone to tell me my results and they were at 47 EF.
I know there are a lot of things that are all part of this whole thing, but for some reason my barrier was my EF.
It is no longer a barrier and I commonly get to 145-150 as part of my cardio today.
I'm telling you this story because I was allowing one part of the overall equation to rule how I felt. Damaged Goods!
I know longer feel that way and in fact I'm in better shape now than I was those 6 years ago!
Work hard, listen to your body & your Drs. and if necessary get a 2nd opinion.
I'm Thankful! Jim@thankful
@fireguy8891 That's disappointing news on the Mri but honestly I, never had an mri in the beginning, the other thing that @thankful mentioned was a stress test that is usually a real good test for Heart Function. But I did not have that either. For me, it was the Cardio Rehab that gave me the confidence I needed. But also I had a pacemaker at the time and MRI's can't be done without lots of planning and usually don't see much. The magnetic waves scatter due to the metal of the pacemaker. But just like thankful said keep working on the cardio and listen to your body the folks at rehab are really knowledgeable at pushing you to your ability and I think that will tell you a lot also.
Thank you for sharing Jim! Truly sounds like you have a lot to be thankful for. I believe I have plenty to be thankful for, but I also believe I have a deadline to get my EF up to a normal level of 3-6 months. Luckily, I have a lot of sick leave to bridge this gap. I am really nervous about losing my job as well as health benefits. I still haven't heard whether the cardiac rehab has been approved or not. I did do a couple of 2-3 mile runs and noted that it took 4-5 hours for my heart to return to resting rate. So, I've decided to wait for the pros to monitor me. Thanks again for sharing your story with me!
@danab I kind of feel like it may not be extremely helpful to have the MRI. I was just hoping to gain a little more information. Most of these stories I have read include a diagnosis with a cause. I have no idea what the cause of my heart failure is. Actually the cardiologist said it may give us an idea what caused it, but very possibly, I will never know. Hopefully insurance will at least approve the cardiac rehab! Thanks for your reply!
@danab and @thankful Just after the hospital called to schedule MRI and I told them the claim was denied, I spoke with insurance. Apparently, the Dr. had pushed the approval through. So, the MRI is on the schedule. My cardiac rehab order has been sitting in a pile of faxes at my local hospital (which has fazed out cardiac rehab). So that is now in the pipeline to another facility in town. You definitely cannot sit and wait for a call, the squeaky wheel gets the grease.
@fireguy8891 – I think you are being wise to wait till you get going in Cardiac Rehab. One interesting thing just happened with me a few months back before all this virus stuff came down. I had my yearly appt. with my cardiologist and they wanted to start increasing my Lisinopril from 2.5mg (what I have been taking since May of 14 after my HA) to eventually around 20mg. I have been increasing by 2.5mg 1st week then 5mg. and now taking 5mg in the morning and 5mg in the evening.
They said that it will help with my EF which seemed strange that I had waited this long to have any increases?
I met with him again (most likely over the computer) to discuss any changes soon. I feel great, but again not sure why they waited that long to increase? Seemed early on that I was the one most concerned about my EF?
One other note. I believe and have looked into this subject for a while and it seems that in many cases after having a HA there may not be a total blockage of the artery and therefore blood is still getting through which prevents less damage to the heart.
Generally thats why in the 1st year after a persons EF will increase. Also, new smaller vessels will often grow to compensate in those areas of the heart with blood flow. In my case, because of the 100% blockage heart tissue died so other parts had to make up the difference. So, my situation just took longer to happen or perhaps the Drs. here misdiagnosed? Either way I am very thankful! Jim@thankful.
@fireguy8891 – You are so…. correct! You have to be the squeaky wheel especially with this Covid-19 stuff going on!
So glad for you that your MRI is scheduled! Jim@thankful
I am a 65 yr old Endurance runner of over 40+ years.In 2016 my performance started to decline and thought was old age. I was healthy and never had any problem with the usual issues of high blood pressure,cv disease or diabetes. In 2012 i had a benign tumor of the stomach removed which never stopped me running. My EF on a stress test was reported as 48 which the Cardiologist considered HF. Here begins my saga he wanted to start me on Lisinopril even though my blood pressure was 98/60 with a heart rate of 52. My EF is now 23 with a laundry of drugs to take. i have had numerous tests for amyloids,sarcodosis,catherization all negative.I am wondering if their is someone out there without ischemia that is improving with this drugs and what these drugs are or should I seek expertise outside traditional medical therapy
@nafoyo, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this related discussion about managing idiopathic non ischemic cardiomyopathy. I did this so you can meet others like you, such as @heartrunner @thankful @fireguy8891 @danab @archer @yorlik and others.
Nafoyo, what drugs besides lisinopril are you taking? Are you still running?
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