Meds for cardiomyopathy – Ischemic/Non-Ischemic

Hi @fireguy8891 I'd like to join @thankful in welcoming you to Connect! That must be so nerve-wracking not knowing how this diagnosis will affect your daily life and career. You may have noticed I moved your post to this existing discussion on medications for non-ischemic cardiomyopathy so that you can connect with others who have similar experience.
Simply click VIEW & REPLY on your email notification to get to your post and meet Connect members like @heartrunner who has mentioned non-ischemic cardiomyopathy in the past and also @predictable and @hopeful33250 who may be able to share thoughts on this as well.

How have you been feeling on the meds? Have you had any symptoms besides the decreased resting heart rate?

My palpitations have stopped. My BP has increased. Also I’m not sure if this is procedure related, med related, or psychosomatic, but every time I sneeze, I feel pain in my chest.

Thank you! I am set up for an appointment this week at National Jewish. Hopefully will get more guidance!

@fireguy8891 Hi welcome to Mayo Connect. I too back at the start of my journey had a low ef due to an enlarged Heart after a virus cause me to build up fluids in the sac around the heart. This caused the heart to work harder and enlarged. This is yhe one muscle we don't want larger. After they recommended a pacemaker in my case i left the Hospital with an ef of 5% . My case was definitely worse than yours but i wanted to write because at the time i worked a real physical job as an electronic technician for the dept of energy which required me to go to mountain tops and climb towers up to 300 ft. Well after a recovery period of 6 weeks after the pacemaker procedure i was back at work light duty for 6 months and then i was back working as normal. They did give me some time to build up to climbing towers again but within a couple of years i was climbing again. My EF came up also and after the first year it was about what yours is now and by 2 years i was about 45-50. I also worked out at a moderate pace first thru cardio rehab then on my own. I loved to hike so i was back hiking moderate trails rather quickly up to 6-7 miles within a couple of years. I will warn you tho i think what i didn't take seriously enough was i still smoked and enjoyed a few beers on the weekends. I did quit smoking finally after i got shocked my first time but i think i did more damage which ended up needing a Heart transplant 2 years ago. But o remember talking to my EP Cardiologist back then and he assured me the sky is the limit. He actually knew of some with heart issues and pacemakers that compete in triathlons. So he always told me to listen to your body and adjust as needed. And i recommend Cardio rehab will help you adjust your workout based on how your heart reacts. I'm hear if you have any questions.

@danab Thank you for sharing your story! I do feel a lot better after speaking with the Dr at National Jewish. He was optimistic for my recovery and return to work. He recommended I see a cardiomyopathy specialist as well as an occupational specialist. So I’m still working on trying to figure out the cause, and fine tune the treatment. Just the hope of recovery alone has improved my mental state tremendously! I will definitely take your advice about cardiac rehab! I have not worked out since my diagnosis, and have some anxiety about doing anything. Both cardiologists said I would be fine doing cardio, but to refrain from heavy weights. I would just feel more comfortable with some guidance and monitoring.

One other thing was that during Cardio Rehap you are wearing a heart monitor and a nurse is watching it. That alone was the key to reducing my stress. I would always ask how it looked and it was always fine. If they do see something they will usually just ask you to back off a little. And the other thing is i was doing the rehab at the Hospital i got the pacemaker at so knowing that if anything ever did happen i was right where i needed to be.

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.

@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