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michelep1964
@michelep1964

Posts: 4
Joined: Jul 04, 2017

Dilated cardiomyopathy.

Posted by @michelep1964, Jul 4, 2017

I have nothing that would cause it. On lisiniprol. No energy, feel like crap every day. Any suggestions on what i can dom

REPLY

Hi @michelep1964. I just happened to be here when you dropped in a few minutes ago. I had just looked in for information on cardiomyopathy myself and found your note. So here’s where I found a lot of information: http://mayocl.in/1wmRKea.

Most interesting to me is that I’m being treated with most of the therapies mentioned in this article — not because I have a lot of symptoms. I have a mild atrial fibrillation, and an echocardiogram a few years ago noticed some heart enlargement. I also am hypertensive. So I have been on Lisinopril and since then, Coumadin for the last three years, and Carvedilol (a beta blocker) for the same period. I have mild edema, but its from my kidneys (I think) rather than my heart. So a diuretic is a daily med. My energy level is fine, although my breath is starting to weaken (problem for me, a singer). Generally feel pretty good from day to day. Get moderate exercise regularly, which helps. A little overweight (10 pounds or so).

Most of the time, a distinct cause of cardiomyopathy is hard to find. It seems to be an accumulation of factors that eventually result in declining blood volumes around the organs (and the brain!). My best advice is to seriously plan and build a good medical team whose members will talk openly with you and show a genuine interest in alleviating any troubling symptoms. I’m lucky. My HMO helped me build my team, and we’re doing fine: I see them or email them when I need to, and they respond with concern and care for me as a patient.

Do you have a medical team? What kind of doctors and specialists?

Hi Michele,
I add my welcome. In addition to @predictable, I’d like to also add @amynewheart @fr0ggie @murryone and @jms7 who have experience with dilated cardiomyopathy. You may also be interested in this past discussion on the topic

– Dilated Cardiomyopathy https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/

@michelep1964. I hope this finds you. Your not alone

Hi @tiredofbeingsick,

Welcome, and thank you so much for your words of support; I’m sure @michelep1964 will appreciate it too.
What brings you to Connect, @tiredofbeingsick?

@kanaazpereira

Hi @tiredofbeingsick,

Welcome, and thank you so much for your words of support; I’m sure @michelep1964 will appreciate it too.
What brings you to Connect, @tiredofbeingsick?

Jump to this post

Just another 37 year old dilated cardiomyopathy patient with a 9% infraction rate trying to connect with others like me

I am interested in hearing from other people who have this condition. My 43 daughter has this, they say probably from the flu. she is showing improvement but would like to know what to expect and if it can be cured! They have not done the test to see if she has heart damage!

Hi @jillybeans22,

Welcome to Connect. I moved your message to this existing discussion on dilated cardiomyopathy because I thought it would be beneficial for you to be introduced to fellow members who have discussed much of what your daughter is experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

In addition to @predictable @tiredofbeingsick @michelep1964, I’d like to also add @amynewheart @mram79 @fr0ggie @murryone @bsox1901 @PatMattos and @jms7 who have experience with dilated cardiomyopathy. You may also be interested in this discussion on the topic;

https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/

This Mayo Clinic page has some incredible patient stories that you might wish to read;
https://www.mayoclinic.org/diseases-conditions/dilated-cardiomyopathy/symptoms-causes/syc-20353149

@jillybeans22, I'm glad to to know that your daughter is showing some improvement; could you share a few more details about her progress? Does she have an implanted device like a pacemaker or LVAD?

@kanaazpereira

Hi @jillybeans22,

Welcome to Connect. I moved your message to this existing discussion on dilated cardiomyopathy because I thought it would be beneficial for you to be introduced to fellow members who have discussed much of what your daughter is experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

In addition to @predictable @tiredofbeingsick @michelep1964, I’d like to also add @amynewheart @mram79 @fr0ggie @murryone @bsox1901 @PatMattos and @jms7 who have experience with dilated cardiomyopathy. You may also be interested in this discussion on the topic;

https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/

This Mayo Clinic page has some incredible patient stories that you might wish to read;
https://www.mayoclinic.org/diseases-conditions/dilated-cardiomyopathy/symptoms-causes/syc-20353149

@jillybeans22, I'm glad to to know that your daughter is showing some improvement; could you share a few more details about her progress? Does she have an implanted device like a pacemaker or LVAD?

Jump to this post

She was diagnosed in Late October of 2017. They did all the tests and could not figure out what caused it. They are assuming it was from the flu, she had been terribly sick the previous April. She just had an Echo in March and her EF was up to 35-40% she was previously at 27% She does not have any devices implanted. She just wore the heart monitor for two weeks but has not gotten the results yet. So we are waiting on that to see what may happen next. The Dr. has not ordered another Echo nor the MRI of the heart to see if there was damage. The Dr. said as long as she showed the improvement doing those tests would not change the course of treatment. She has started cardiac rehab. She also is over weight and has been told she needs to get the weight off. when she exerts herself she sweats terribly. Even just going up a flight of stairs. I will let you know what the result of the heart monitor are. She is on 3 drugs as of now, blood pressure meds, beta blocker and I don't know the 3rd. Dr. said she needs to get her stamina up.

@predictable

Hi @michelep1964. I just happened to be here when you dropped in a few minutes ago. I had just looked in for information on cardiomyopathy myself and found your note. So here’s where I found a lot of information: http://mayocl.in/1wmRKea.

Most interesting to me is that I’m being treated with most of the therapies mentioned in this article — not because I have a lot of symptoms. I have a mild atrial fibrillation, and an echocardiogram a few years ago noticed some heart enlargement. I also am hypertensive. So I have been on Lisinopril and since then, Coumadin for the last three years, and Carvedilol (a beta blocker) for the same period. I have mild edema, but its from my kidneys (I think) rather than my heart. So a diuretic is a daily med. My energy level is fine, although my breath is starting to weaken (problem for me, a singer). Generally feel pretty good from day to day. Get moderate exercise regularly, which helps. A little overweight (10 pounds or so).

Most of the time, a distinct cause of cardiomyopathy is hard to find. It seems to be an accumulation of factors that eventually result in declining blood volumes around the organs (and the brain!). My best advice is to seriously plan and build a good medical team whose members will talk openly with you and show a genuine interest in alleviating any troubling symptoms. I’m lucky. My HMO helped me build my team, and we’re doing fine: I see them or email them when I need to, and they respond with concern and care for me as a patient.

Do you have a medical team? What kind of doctors and specialists?

Jump to this post

Hello,

I have a mild form of DCM. I’m on Furosemide 20mg PD. I have never been admitted to the hospital for HF exacerbations.

I remain very active because I live on 40 acres in the woods. On a daily basis I will have at least an hour of physical work. During this period I do not suffer from dyspnea.

I do however sweat profusely, and I need to replace those fluids. I have been unable to find anything online about fluid replacement for HF patients who can still perform rigorous exercise. Can you help me please?

@predictable

Hi @michelep1964. I just happened to be here when you dropped in a few minutes ago. I had just looked in for information on cardiomyopathy myself and found your note. So here’s where I found a lot of information: http://mayocl.in/1wmRKea.

Most interesting to me is that I’m being treated with most of the therapies mentioned in this article — not because I have a lot of symptoms. I have a mild atrial fibrillation, and an echocardiogram a few years ago noticed some heart enlargement. I also am hypertensive. So I have been on Lisinopril and since then, Coumadin for the last three years, and Carvedilol (a beta blocker) for the same period. I have mild edema, but its from my kidneys (I think) rather than my heart. So a diuretic is a daily med. My energy level is fine, although my breath is starting to weaken (problem for me, a singer). Generally feel pretty good from day to day. Get moderate exercise regularly, which helps. A little overweight (10 pounds or so).

Most of the time, a distinct cause of cardiomyopathy is hard to find. It seems to be an accumulation of factors that eventually result in declining blood volumes around the organs (and the brain!). My best advice is to seriously plan and build a good medical team whose members will talk openly with you and show a genuine interest in alleviating any troubling symptoms. I’m lucky. My HMO helped me build my team, and we’re doing fine: I see them or email them when I need to, and they respond with concern and care for me as a patient.

Do you have a medical team? What kind of doctors and specialists?

Jump to this post

My daughter sweats profusely too! Is that part of this disease??? Her Dr. doesn't seem to have an answer for it!

@predictable

Hi @michelep1964. I just happened to be here when you dropped in a few minutes ago. I had just looked in for information on cardiomyopathy myself and found your note. So here’s where I found a lot of information: http://mayocl.in/1wmRKea.

Most interesting to me is that I’m being treated with most of the therapies mentioned in this article — not because I have a lot of symptoms. I have a mild atrial fibrillation, and an echocardiogram a few years ago noticed some heart enlargement. I also am hypertensive. So I have been on Lisinopril and since then, Coumadin for the last three years, and Carvedilol (a beta blocker) for the same period. I have mild edema, but its from my kidneys (I think) rather than my heart. So a diuretic is a daily med. My energy level is fine, although my breath is starting to weaken (problem for me, a singer). Generally feel pretty good from day to day. Get moderate exercise regularly, which helps. A little overweight (10 pounds or so).

Most of the time, a distinct cause of cardiomyopathy is hard to find. It seems to be an accumulation of factors that eventually result in declining blood volumes around the organs (and the brain!). My best advice is to seriously plan and build a good medical team whose members will talk openly with you and show a genuine interest in alleviating any troubling symptoms. I’m lucky. My HMO helped me build my team, and we’re doing fine: I see them or email them when I need to, and they respond with concern and care for me as a patient.

Do you have a medical team? What kind of doctors and specialists?

Jump to this post

Hello @clink54,

Welcome to Connect. Here's an in-depth article from the American Heart Association about dilated cardiomyopathy: http://circ.ahajournals.org/content/134/23/e579#sec-211
You may also be interested in this past discussion on the topic
– Dilated Cardiomyopathy https://connect.mayoclinic.org/discussion/dilated-cardiomyuopathy-meds/

Furosemide (Lasix) belongs to a group of medicines called diuretics (also known as water pills). Furosemide is given to help treat fluid retention (edema) and swelling that is caused by congestive heart failure, liver disease, kidney disease, to treat high blood pressure (hypertension). It works by acting on the kidneys to increase the flow of urine. https://www.mayoclinic.org/drugs-supplements/furosemide-oral-route/description/drg-20071281

I'm tagging Mentor @cynaburst, as she has experience with cardiomyopathy and may be able to share her thoughts about the sweating that you and @jillybeans22 have mentioned.

@clink54, have you taken your concerns to a cardiologist? Do you feel that the sweating is excessive or all over your body?

@monamampm

I am a 41 year old with dialated cardiomyopathy, not sure how to handle all this. Any suggestions?

Jump to this post

I was just diagnosed with this also. I had valve replacement in 2014 and believe this led to me getting dialated cardiomyopathy. My dr. Has me on medications to help with it. So far, I’ve seen a positive difference in my pulse and how I feel. I didn’t realize I had symptoms until I started medication…I noticed I felt better. I am pleased with my cardiologist and am following his advice. I ask a lot of questions to help me understand. That’s the best I can offer right now. I’m currently waiting for another Electro cardiogram to be done to see if I have improved…

I am a 41 year old with dialated cardiomyopathy, not sure how to handle all this. Any suggestions?

Hi, @camaroyo, and welcome to Mayo Clinic Connect. @monamampm – great to hear from you.

I've merged your posts with this discussion called "Dilated Cardiomyopathy" so that you can talk with other members in similar situations. Please meet @michelep1964 @cynaburst @clink54 @predictable @jillybeans22 @tiredofbeingsick and others. @monamampm and @camaroyo – hoping these members can offer some support in dealing with your dilated cardiomyopathy.

@camaroyo – glad you are pleased with your cardiologist and you've seen a positive difference so far with your medication. You mentioned following your doctor's advice. Beyond the medication prescribed, wondered if he or she had any self-care or lifestyle advice you could share? What medication are you currently taking?

@monamampm – were there any specific aspects of how to handle your diagnosis you had questions about?

Hi, sorry..this went to junk mail & just saw it. I was just diagnosed in Aug with this. I had heart valve replacement in 2014 and believe the dialated cardiomyopathy is probably a result of that. Plus I had to get a pacemaker cause atrial fibrillation meds caused my heart rate to drop to 30 and below. The meds I was put on for the cardiomyopathy are Carvedilol (25mg) (Coreg) & lisinipril (10mg). Just increased to 25 mg about a week ago. I’m due for an echo in Jan to see if there is an improvement in my EF rate. But I also take sotalol AF, coumadin (warfarin) & metformin. The sotalol AF & coumadin are for when I had atrial fibrillation (which I haven’t had since surgery). I have low numbers (meaning not way about the limit) too on diabetes and watch that. The lifestyle has not changed for me fortunately as I don’t have significant symptoms that I am aware of. But best lifestyle is to exercise… walking is my best right now. Have foot problems and surgery in a couple days on my right foot, but will start walking again ASAP. I eat pretty clean, no fried foods, not much red meat at all, drink water daily, don’t eat a lot of sugar, but I love sweets so have moments. But I do have a hard time losing weight now. I could stand to lose some…as time goes on and if I see issues with this, I may have questions.

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