Martin Jensen, Volunteer Mentor | @predictable | Jul 4, 2017
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?
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2017
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
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?
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?
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!
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.
@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?
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.
@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?
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.
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?
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?
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?
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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?
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3 ReactionsHi 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/
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1 Reaction@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?
Just another 37 year old dilated cardiomyopathy patient with a 9% infraction rate trying to connect with others like me
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2 ReactionsI 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?
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.
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?
My daughter sweats profusely too! Is that part of this disease??? Her Dr. doesn't seem to have an answer for it!