For Those Living with Cardiomyopathy and Heart Failure

@retirement75
Do you have access to state of art medical centers like Cleveland Clinic, Mayo, John Hopkins? If you go there almost certain you will get excellent care.

For many years I drove 4 hours to get to Mayo Clinic in Jacksonville to make sure I was getting the best treatments for my HF and cardiomyopathy. I have been coming to Mayo Jacksonville since 2006. I moved back in 2015 to Jacksonville area both to be closer to Mayo but I also loved the community I found with an indoor heated pool, and great expanses of conservation areas.

Excellent advice. I follow these providers on their websites for research. Mayo Clinic is 4 hrs from where I live. Cleveland Clinic is also 5 hrs or so.

@retirement75 I imagine it become more and more difficult to push for answers with every dismissive response you get. I agree with @jc76 recommendations and it has been well worth my 7 hour drive to seek care.

You may not need to be permanently close, just willing to be available and walk through the steps offered to you. I have been a Mayo Clinic patient and I wouldn’t trust anyone else at this point. My daughter is a different example, traveling for a consult and ultimately getting help to find a surgeon just right for her in her own backyard.

You can contact Mayo Clinic for an appointment here: http://mayocl.in/1mtmR63

You mention fatigue. Are there other symptoms you are having, additional concerns needing addressed?

@retirement75
You can't get any better medical facilities than Mayo and Cleveland Clinic. They helped me find a local cardiologist that was Mayo trained as they wanted me to have a local cardiologist who would work with them as a team.

I never minded the long drive to Mayo as I knew I was getting the best care from one of the most experienced medical institutions in the world.

My (many) docs are excellent clinicians, but they all have different personalities ranging from EVERYTHING needs more medication to NAH, if you are not feeling well go to the ER.
It's to much work finding and adjusting to new docs, until I find out what quirks they have.
So I've learned to adjust my thinking to include my expectations of tx based on the psychological profile of the doctor. It works, and they have no problem with me.
I do have an advantage with a friend who's a really good ENT (ret.) who tells me how doctors are. He has the same problems with them as we do when he's a patient even when he tries the good old boy network routine.

Update 7/2/26 - I tried a new cardiologist, who had a wonderful marketing video online. Much to my disappointment he didn't represent himself in person as video. My issue is lack of what I feel is good communication and answering your questions. My EF had supposedly dropped to 36 from 46. I was somewhat alarmed. New dr. recommended doing a repeat limited echo, which showed my EF was up to 51%. I had recently started on Spironolactone and Farxiga. However, as those of you who are dealing with this diagnosis know, your symptoms don't change. I don't know if you can even describe your "fatigue" as that. It's debilitating. The consensus from the new Dr. is that my fatigue may be caused by sleep apnea or metoprolol. This seemed like gaslighting to me as everything you read about cardiomyopathy and HF supports fatigue as a symptom, which can be severe. I feel such a disconnection. I think they don't talk about how you feel because they know they can't do anything about that. Computer input shows: Impact on Quality of Life - fatigue significantly reduces the quality of life and is associated with mortality. I'm also reading this is an understudied symptom. I can't believe this. I don't think treatment is successful until they can actually treat this.

@retirement75
Many things can cause a low EF and heart failure. Many women when pregnant come down with heart failure and recovery months after delivery. Medications can affect the heart negatively just like the do positive affect.

One of cardiologist described heart failure this way. "On third will get worse, one third will stay the same, and one third will get better." Symptoms can change. My EF has been the same for over 10 years. I am at 22%.

A normal EF is 50-70. So if your EF is 50 it is on the low end but still normal. Many many drugs can cause fatigue. When I started Entresto and Carvedilol I had extremely high fatigue. I thought would not be able to take. My doctors (all at Mayo Jacksonville) told me takes time for body to adjust to those drugs and hang in there as will get better. I did, and it did.

I had a allergic reaction to Spironolactone and had to switch. Your doctors suggestion that sleep apnea may be causing your fatigue is correct. It can also affect heart failure. I am getting ready to do another sleep study to see if sleep apnea is present. It was ordered by my electrophysiologist as can contribute to heart failure, PVCs, PACs and VTAC.

Talk to your doctors about you fatigue and see if you can do exercises that will help you with your fatigue. I know sounds like "what" but your body needs exercise or muscles atrophy and you will have fatigue.

I know when I went through prostate cancer radiation treatments I was told that a common side affect was fatigue and my R/Os told me to try to keep walking as will help with the fatigue. They were right it did come on about half way through but I was already walking to keep it from being severe.

I recently had weakness in my thigh muscles and my heart failure and primary care doctors asked me to do specific exercises to strengthen those muscles. You did not mention your age (I am 79) but my doctors say with age muscles will lose muscle tone and need to do strengthening exercises. But like exercising you need to get your physicians to approve and recommend what is best for you.

@jc76 @jc76 My last two Echos showed my EF was between 20-25. I cannot figure out if my lightheadedness, dizziness, and shakiness is caused by my low EF or if something else is causing these debilitating symptoms. My blood glucose is high (110), but I have not been diagnosed with Type II diabetes. I have an appointment with EP at Mayo (Phoenix) but not until September 2nd and every day I worry about going anywhere that I may feel like I am going to faint. I admit when these symptoms suddenly appear I work myself up which makes it even worse. Since your EF is similar to mine, I was wondering if you experience anything like this. Thank you in advance!

My chf and tx has me tired, fatigued, confused, all of 'em. Can't figure out what it is. (Better since went off metprolol). I just push on with usual qol and sit down alot (instead of falling down- only one time years ago. Head down. Got up too fast. Orthostatic hypotension 67 y/o)
Two days ago, it was LBS. (leaky bowel syndrome, which is not yet recognized as a dx)

@shmerdloff