Meds for cardiomyopathy – Ischemic/Non-Ischemic

Posted by archer @archer, Aug 5, 2018

Would like to know the medications and other treatments that other patients have been given for cardiomyopathy with heart failure symptoms.

@colleenyoung

@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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Eplerenone,isosorbide mgo. Tosemide
Running went from a slow shuffle, 30 sec run and stop now I can barely hold15 sec of jog/stop

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Hello @nafoyo,

I have just been reading your posts about your heart problems. I noticed that these changes in your heart function came after surgery to remove a tumor in your stomach. If you care to share more about this: how long ago was the surgery? Were the changes in your heart functioning soon after that?

As this heart disorder has caused some very major changes in how you feel as well as in your lifestyle, I'm wondering if you have been seen at a major heart clinic. You do not mention where you live, however, I would encourage you to seek a heart specialty center. There are many in the U.S. including Mayo Clinic, Cleveland Clinic, etc.

Have you considered a second opinion?

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@hopeful33250

Hello @nafoyo,

I have just been reading your posts about your heart problems. I noticed that these changes in your heart function came after surgery to remove a tumor in your stomach. If you care to share more about this: how long ago was the surgery? Were the changes in your heart functioning soon after that?

As this heart disorder has caused some very major changes in how you feel as well as in your lifestyle, I'm wondering if you have been seen at a major heart clinic. You do not mention where you live, however, I would encourage you to seek a heart specialty center. There are many in the U.S. including Mayo Clinic, Cleveland Clinic, etc.

Have you considered a second opinion?

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Thank you for asking.I left out a lot about my story because I am not looking for empathy.I just want to know if anyone out there has been successfully treated by a Dr for cardiomyopathy they don’t know the underlying cause, The 2 cm benign tumor was taken out in Dec 2012. I recovered in two months and was racing but not before I had Iron infusion to correct for low level hemoglobin My low Hemoglobin was like a rollacoaster10-13,My hematologist said this was not of clinical concern.At that point I sought local cardiologists.I have seen 10 of them.The obvious tests I mentioned were run lncluding DNA analysis.For most they simply wanted to drug.Been to Mayo AZ and tested for sarcoidosis ALL negative.Normal metabolics and CBC.I am a Gymn rat just can’t run. I cried many times when this first happened but I have now gotten over, I refuse to believe that a country that can send a man to the moon can not solve a heart problem.There is a sharp Dr out there that is not a puppet of GDMT that is going to crack my case.In the meantime I am hoping to hear some successes story.I live in Pa

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@nafoyo

Thank you for asking.I left out a lot about my story because I am not looking for empathy.I just want to know if anyone out there has been successfully treated by a Dr for cardiomyopathy they don’t know the underlying cause, The 2 cm benign tumor was taken out in Dec 2012. I recovered in two months and was racing but not before I had Iron infusion to correct for low level hemoglobin My low Hemoglobin was like a rollacoaster10-13,My hematologist said this was not of clinical concern.At that point I sought local cardiologists.I have seen 10 of them.The obvious tests I mentioned were run lncluding DNA analysis.For most they simply wanted to drug.Been to Mayo AZ and tested for sarcoidosis ALL negative.Normal metabolics and CBC.I am a Gymn rat just can’t run. I cried many times when this first happened but I have now gotten over, I refuse to believe that a country that can send a man to the moon can not solve a heart problem.There is a sharp Dr out there that is not a puppet of GDMT that is going to crack my case.In the meantime I am hoping to hear some successes story.I live in Pa

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@nafoyo I'm glad that you provided a bit more information. While I understand your wanting answers and a treatment plan, some diagnoses take time. I have had health problems that also took a lot of visits to specialists and a lot of persistence in looking for answers. I know how frustrating it can be, but keep looking for answers. I hope that another member of Connect might be able to offer you some suggestions.

What is your most difficult symptom right now, @nafoyo?

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@nafoyo Hi and im not sure if I can add anything but the only symptom that I had and what it can cause might help. When I had a low ef it has the potential to cause fluid retention. You see the heart has a duel purpose besides pumping blood it also pushes fluid that collects in the lungs into the urine tract to get rid of it. When the heart is weaker it is less affective in pushing on the lungs to accomplish this. So most people with heart failure due to low ef need to be on diuretics and for me it was a daily weight in that I could tell if I was retaining to much fluid by sharp increases in weight. This after getting used to what dose I would take would prompt me adjust the diuretics based on it. But like Teresa said it takes time and under a cardiologist guidance can be achieved. But you may ask about that at your next Cardiology visit. I know when I would retain to much it makes you a bit more sluggish and if it builds up around your Heart can really cause problems. That's how I found out. So I hope that may help. I am.also curious what other symptoms you may experience.
Have a Blessed Day
Dana

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@hopeful33250

@nafoyo I'm glad that you provided a bit more information. While I understand your wanting answers and a treatment plan, some diagnoses take time. I have had health problems that also took a lot of visits to specialists and a lot of persistence in looking for answers. I know how frustrating it can be, but keep looking for answers. I hope that another member of Connect might be able to offer you some suggestions.

What is your most difficult symptom right now, @nafoyo?

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My most difficult symptom is I can barely jog 30 seconds without running into chest pain and running out of breath.. When I stop to rest my heart is not racing but I the sensation feels like I just finished a fast sprint. Another symptom I have is my stomach gets so tight I can barely breath deep with any exertion. For a 6 min per mile runner not to jog 30 sec is an under statement.
I appreciate your concern but I have not given up. I will be seeing a sports Cardiology group an U Penn next month. I have also recently read about another group at Mass General if U Penn doesn't pan out. This is a different personal Marathon.

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@nafoyo

My most difficult symptom is I can barely jog 30 seconds without running into chest pain and running out of breath.. When I stop to rest my heart is not racing but I the sensation feels like I just finished a fast sprint. Another symptom I have is my stomach gets so tight I can barely breath deep with any exertion. For a 6 min per mile runner not to jog 30 sec is an under statement.
I appreciate your concern but I have not given up. I will be seeing a sports Cardiology group an U Penn next month. I have also recently read about another group at Mass General if U Penn doesn't pan out. This is a different personal Marathon.

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I forgot to add the use drugs has also precipitated gout which in itself is another world of pain. But i will endure

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@danab

@nafoyo Hi and im not sure if I can add anything but the only symptom that I had and what it can cause might help. When I had a low ef it has the potential to cause fluid retention. You see the heart has a duel purpose besides pumping blood it also pushes fluid that collects in the lungs into the urine tract to get rid of it. When the heart is weaker it is less affective in pushing on the lungs to accomplish this. So most people with heart failure due to low ef need to be on diuretics and for me it was a daily weight in that I could tell if I was retaining to much fluid by sharp increases in weight. This after getting used to what dose I would take would prompt me adjust the diuretics based on it. But like Teresa said it takes time and under a cardiologist guidance can be achieved. But you may ask about that at your next Cardiology visit. I know when I would retain to much it makes you a bit more sluggish and if it builds up around your Heart can really cause problems. That's how I found out. So I hope that may help. I am.also curious what other symptoms you may experience.
Have a Blessed Day
Dana

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Thanks you for your advice. You are a right about fluid and salt retention. This is as menacing as running out of breath. I am on fluid and salt restriction. Torsemide while great for diuresis affects salt re absorption in the kidney leading to Uric acid accumulation. Urecemia in heart failure is not good news. Leave alone the gout it precipitates.

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@nafoyo

My most difficult symptom is I can barely jog 30 seconds without running into chest pain and running out of breath.. When I stop to rest my heart is not racing but I the sensation feels like I just finished a fast sprint. Another symptom I have is my stomach gets so tight I can barely breath deep with any exertion. For a 6 min per mile runner not to jog 30 sec is an under statement.
I appreciate your concern but I have not given up. I will be seeing a sports Cardiology group an U Penn next month. I have also recently read about another group at Mass General if U Penn doesn't pan out. This is a different personal Marathon.

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I am so glad to hear that you are pursuing other opinions, @nafoyo. Your persistence is admirable! You are right in that this is a different personal marathon for you. You deserve to get the best diagnosis and treatment possible.

Since you will be seeing a new specialist next month you might find a Connect conversation on this topic interesting. Here is the link, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/.

I was wondering, has any cardiologist done a Cardiopulmonary stress test (CPT)? This is generally is done at major hospital systems, not in a cardiologist's office. Here is some information about this test,
https://stanfordhealthcare.org/medical-tests/c/cardiopulmonary-exercise-test.html.

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