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dilated cardiomyopathy
I am a 39 year old female who was recently diagnosed with dilated cardiomyopathy. Currently, I experience very few symptoms. My diagnosis was made after visiting my family Dr. for unrelated illness.
After several tests, I know that I have some PVC's and an EF of 25. I do not have any signs of blockage at this point. I am wondering if anyone else has this. If so, what are your experiences? What can I expect?
I am currently taking Coreg only.
After several tests, I know that I have some PVC's and an EF of 25. I do not have any signs of blockage at this point. I am wondering if anyone else has this. If so, what are your experiences? What can I expect?
I am currently taking Coreg only.
Same thing here, happened out of the blue. I’m a recently 41 yr old with dilated cardiomyopathy and chf with EF of 20%. Wearing a Lifevest and possibly idc soon
My doctor has never told me a prognosis, but I have wondered. He said he doesn't know. I have only recently been diagnosed, and he said he does not know what is normal for me. I, too, wonder what the outlook is considering I am only 39 years old! I would love to hear what others have been told.
I have pretty much decided that I am going to stay positive, do what I can, and not worry about the future. I do know that every day is a gift.
I have pretty much decided that I am going to stay positive, do what I can, and not worry about the future. I do know that every day is a gift.
I just found this site this morning and have been reading through the posts on dilated cardiomyopathy. I was diagnosed last summer with an EF of 25% and severe blockage in one artery. After inserting a medicated stint, and taking the max dosage of coreg (50 mg daily), tricor, altace, plavix, zetia and lipitor for nearly a year, my EF is 45%. Aside from feeling tired, and not having the energy for skiing and hiking, I feel pretty good for a man of 54. After visiting my cardiologist this week for a regular checkup, I asked him for a prognosis. He said, "Well, considering we estimate you've had cardiomyopathy for four years, and considering the life expectancy is five years, I would say you've got a good solid one year left, but who knows". That sounded awfully pessimistic to me. Most of the posts I
You asked if I have been told anything about my prognosis. I have not. My cardiologist said he really doesn't know becuase he doesn't know what is "normal" for me. He also said because I am not currently feeling poorly, my outlook is better. I have read many things on the Internet but don't want to let those things scare me. I have told myself that I will keep on living just as I was before I knew I had this. Although I will monitor my symptoms, I don't want to let it be the primary focus of my life.
I understand that much progress has been made in treating heart conditions in recent years. I hope that continues. Although I do feel slightly tired, I think I can "make it."
I hope things go well for you. As I said before, it is comforting to know that there are others going through the same thing. I hope we can provide encouragement and support for each other.
I appreciate all the posts!
I understand that much progress has been made in treating heart conditions in recent years. I hope that continues. Although I do feel slightly tired, I think I can "make it."
I hope things go well for you. As I said before, it is comforting to know that there are others going through the same thing. I hope we can provide encouragement and support for each other.
I appreciate all the posts!
I too was diagnosed in Dec 06 with dilated cardiomyopathy from a virus. I'm currently taking the highest dose of Coreg 2x a day and I'm taking Lisinopril, Zocor, aspirin, and lasix when I gain 3-5 pounds a week. In one night I gained 5 pounds and I couldn't believe my eyes! I was sick, sick, sick and just kept going back to the doctor, over and over again until I finally changed doctors and the new one found out my problem in 2 days. She immediately sent me for an echo that showed 37% EF, and so I can't even imagine how those of you with 25% don't feel your symptoms! I am so tired every day with the 37% and at times I feel like I just can't take another step and I'll sleep for hours and hours! How do you do it? I'm told I'm not allowed to exercise yet, I'm sure from what you mentioned, that I need time to be on the meds, well actually now I've been on them for 4 months, but truthfully, I don't know that I could stand it! I have lost 16 pounds though and I've not gained any so I'm gonna count my blessings on that since I see some of you have gained while on the Coreg. Just this week I'm back on the Lasix and my cardiologist just says to stay on it until I feel better. I'm still waiting! :) I wish all of you and myself, luck!! I have never heard of such a thing until it happened to me!
I too am recovering from a post partum cardiomyopathy. I just "met" Amy on the heart forum board recently. I am 42yo and it was dx just shy of 6 wks post partum. I too was visiting my PCP for another reason and he picked it up when, as I was leaving I said I was still tachycardic, he stopped me in the corridor and listened to my heart. Sent me for testing and an immed echo. My OB office before delivery and during delivery had completely missed it, despite ongoing symptoms that are classic for cardiomyopathy.
I am fortunate that my EF is now 60-65% and when they found it, it was 45%, but I had horrible edema. I still find that my weight can jump 7 lbs overnight, esp if I eat salty foods. I have not done cardiac rehab, other issues have played into my picture, but I have thought about asking about it. I had horrendous fatigue for the longest time and still 17mths later struggle with it on a daily basis. For now I would suggest making time to rest, every day.
GL I hope you feel better soon.
Fiona
I am fortunate that my EF is now 60-65% and when they found it, it was 45%, but I had horrible edema. I still find that my weight can jump 7 lbs overnight, esp if I eat salty foods. I have not done cardiac rehab, other issues have played into my picture, but I have thought about asking about it. I had horrendous fatigue for the longest time and still 17mths later struggle with it on a daily basis. For now I would suggest making time to rest, every day.
GL I hope you feel better soon.
Fiona
hi .,
i just read your comment,, i too am a 32 year old who was recently told i have dilated cardiomyopathy same as you i went to my family doctor for an unrelated illness . he sends me to a cardioloigst and boom i get told i have this terrible thing. at first they thought i was due to my pregancies but 5 doctors later. i was told it was due to a virus.. i can be any virus flu, sinus infection. any.. my youngest is 5 and he said that i would of have known by now that something was wrong. the only thing i ever felt was tired but i thought it was the job of being a mom and taking care of my house, kids, and husband plus working full time. so i never thought too much of it. now im told i have this. the worst part of it i had wanted one more child and i dont know if that will be possible. but right now im on toprol, and atacand my doctor susposed to be the best in this field . so far the meds are okay. no problems except my potassium went way low the other day . i ended up in the hospital. other than that im fine.. have any doctors told you about long term pronosis for this .. i wonder sometimes..
i just read your comment,, i too am a 32 year old who was recently told i have dilated cardiomyopathy same as you i went to my family doctor for an unrelated illness . he sends me to a cardioloigst and boom i get told i have this terrible thing. at first they thought i was due to my pregancies but 5 doctors later. i was told it was due to a virus.. i can be any virus flu, sinus infection. any.. my youngest is 5 and he said that i would of have known by now that something was wrong. the only thing i ever felt was tired but i thought it was the job of being a mom and taking care of my house, kids, and husband plus working full time. so i never thought too much of it. now im told i have this. the worst part of it i had wanted one more child and i dont know if that will be possible. but right now im on toprol, and atacand my doctor susposed to be the best in this field . so far the meds are okay. no problems except my potassium went way low the other day . i ended up in the hospital. other than that im fine.. have any doctors told you about long term pronosis for this .. i wonder sometimes..
I gained weight on it too, looking back it has been about a pound a week I see my Doc tomorrow and I am going to ask to go back to Toprol XL...it stopped working, but maybe the break helped. I have gained weight despite a change in diet and I watch what I eat. UGH
oh ps.
i was on coreg.. and you gain alot of weight ...i was on it for 6 weeks and gained 6 lbs.. average 1 lb per week that was crazy.. i went off it lost the weight now im okay... i would ask you doctor to switch meds.. to me it was awful...
i was on coreg.. and you gain alot of weight ...i was on it for 6 weeks and gained 6 lbs.. average 1 lb per week that was crazy.. i went off it lost the weight now im okay... i would ask you doctor to switch meds.. to me it was awful...
HAve you asked about cardiac rehab?? It's a wonderful thing if you can do it, I'm not sure they will want you to do it right away, I remember I needed to wait until 4 months onmeds before I could exercise at all, then, I didn't have it until 2.5 yrs when my EF wouldn't budge past 35%.
It's done at the hospital and you are monitored the whole time. The patients are a lot older, but it was fun, I made a lot of fun freinds while doing it.
It's done at the hospital and you are monitored the whole time. The patients are a lot older, but it was fun, I made a lot of fun freinds while doing it.
Currently, I am not having issues with water retention, although I am encouraged to check my weight daily.
When I was at my family dr., they said my pulse rate was extremely low. He did an EKG and said I had PVC's that were not detected. I then had a 24 hr. monitor, an ultrasound, and a stress test that determined my heart is enlarged and my EF is 25. I was a bit shocked as I felt fine previously. I guess that's a good thing for my overall prognosis.
Although I'm sorry that you have PPCM, it's comforting to me to know that someone else has a similar situation and is improving. I hope all goes well with you.
When I was at my family dr., they said my pulse rate was extremely low. He did an EKG and said I had PVC's that were not detected. I then had a 24 hr. monitor, an ultrasound, and a stress test that determined my heart is enlarged and my EF is 25. I was a bit shocked as I felt fine previously. I guess that's a good thing for my overall prognosis.
Although I'm sorry that you have PPCM, it's comforting to me to know that someone else has a similar situation and is improving. I hope all goes well with you.
The coreg makes me very very tired. I was on Torpl XL for 6.5 yrs, when it stopped working, thats when they switched the meds to coreg.
I I've been on it for 3 months and still feel like a zombie. I see my cardio MOnday and I will ask about it then.
Are you on any water pills?? Or isn't that a problem.
How did they find it? I'm glad ythey did.
amy
I I've been on it for 3 months and still feel like a zombie. I see my cardio MOnday and I will ask about it then.
Are you on any water pills?? Or isn't that a problem.
How did they find it? I'm glad ythey did.
amy
My son is 10. My DR. thinks mine is viral although I can't recall any viruses in recent years.
Sounds like you are improving. Great!
I have an appointment soon and will ask about ACE inhibitor.
Have you noticed any physical changes with meds? I am feeling tired, and I lack motivation. Hopefully, this will improve as I adjust to meds.
Sounds like you are improving. Great!
I have an appointment soon and will ask about ACE inhibitor.
Have you noticed any physical changes with meds? I am feeling tired, and I lack motivation. Hopefully, this will improve as I adjust to meds.
How old is your child?? I was diagnosed with PPCM a pregnancy induced CM. My EF was 20% and now 7 yrs later is 45%. I was just switched to Coreg, PPCM is diagnosed before or shorly after the birth of a child.
HAve you asked about an ace inhibitor, usually that goes witht he beta blocker. I am on coreg, and enalapril.
HAve you asked about an ace inhibitor, usually that goes witht he beta blocker. I am on coreg, and enalapril.
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