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"Thoughts on Cardiomyopathy".......

KJ3
0 Recommendations

Sounds like the beginning of 'Ode to a Grecian Urn' or something, doesn't it? Well, it's only my thoughts for the day on my heart disease, and how I cope daily. I am so thankful for this community and the friends I've made thus far. You are all my heart sisters, and I wish I could get to know each of you personally.
I do, however, wish I could communicate more in depth with those of you with idiopathic cardiomyopathy like mine. I was diagosed in 2002, and have since been on a medication therapy regimen that has proven to be quite successful. I take eight heart medications; most of them to keep my BP and cholesterol levels unusually low since my cardiologist believes in preventative care, and first and foremost, lessening the work/stress on the heart. Fortunately, I have very few, if any, unfavorable side effects from my medications. My cardiologist has been very pleased with my progress. My EF has gained several points, going from 30 at diagnosis to 36 now. I have no coronary artery disease (thank God), no blockages and no kidney involvement. I usually feel quite well on a daily basis, although I still 'self monitor' my body almost constantly and am forever 'listening in' in fear of some new twinge, ache or pain appearing. (I find that when I am the most intent in this fear, I can always find that 'new' twinge).
That is how I get to this place of 'thoughts on cardiomyopathy'... there are times when I think about how many meds I take, how many chemicals and substances I put into my body on a daily basis, and then I begin to wonder what would happen if I were to stop taking all that "stuff".
No, no; I am not depressed nor self destructive, but I do have concerns about long term usage of these drugs; and it is difficult to imagine or even think of calculating the long term expenditures.
My cardiologist and primary physician say it is all good; and that if stopped, I would not die immediately, but eventually my heart would indeed weaken and fail.
So, my friends, what are your 'thoughts'. Does anyone share similar concerns and fears? I would love to hear about how you handle all the uncertainties and questions. It is such a struggle to resolve these 'issues in the mind'; and it would be so helpful to share your resources and resourcefulness.

Explore topics in this discussion:

Exercise Heart transplant Heart failure Tylenol Chronic fatigue syndrome Hypertrophic cardiomyopathy Atacand Anxiety Lasix Altace Lupus Bronchitis Fibromyalgia Pulmonary hypertension Xanax Stress Heart disease Asthma Arthritis Aspirin Stroke Fever Cardiomyopathy Hypertension Pain Cozaar Heart attack Congestive heart failure Depression Mental health

15 replies

Marisa

HELLO! I'm a fellow Cardiomyopathian! I was thinking the same thing the last time I logged on! WHere's all the people with Cardimyopathy??? This disease found me almost a year ago, and I still wake up and think maybe it was a dream. I soon realize it's not when it takes me forever just to get out of bed. My medication seems to make me very tired. I sleep more than I ever have. I too wonder about all the medicine I take. I count 8 as of today. I remember how hard it was just to answer the door before I started taking it, and figure the good outweighs the bad. My doctor says my meds are life saving drugs for me. I choose to trust him on that. I worry more about them not working anymore...then what? When I was diagnosed (from what I thought was just anxiety and weight gain) with Idiopathic Cardiomyopathy, I thought it was a mistake. I saw three more doctors until I believed it. I still feel cheated, frustrated, and prematurely senior a lot of the time. ( I constantly get "You're too young to be in here! at my Cardiac Rehab Therapy, Doctor's office, etc. ) The best way for me to handle the whole thing is to keep myself busy. I was off work for 3 months while I got accustommed to my meds, had an angiogram, etc.....and almost continuously worried, fretted, and actually made myself sicker! My doctor wanted to put me on permanent disability, but I begged him not to. Thank God he let me continue to work 35 hours a week, take care of two teenage daughters, husband, 3 dogs, and 1 cat...with help that is. Not to say that I don't have moments where I feel sorry for myself, I do. It gets me no where, however except depressed. I'm trusting God to help me focus on today, not what might happen. I hope I commented a little on what you were looking for.
God Bless
Marisa

Dmadscientist

Add me to the list! Me, hypertrophic cardiomyopathy.
Dignosed in 1998, so I've been living with it for 10 years, plus a mini-stroke in January 2004 for good measure. Saying that I pay VERY close attention to my heart is an understatment. Every twitch, every beat, everything....

laurali

Hi KJ and Marissa -- I think we heart failure/cardiomyopathy people are in a minority here! I was diagnosed in May 2006 (2 years ago, wow!) following a complete heart block in the middle of the night and subsequent ICD implant. I too, wonder about long term effects of my meds even though I have done really well on them. EF has gone from 30 to mid-50s and I was able to lower my beta blocker. So, now I'm on 3 meds + aspirin (why don't I think that's a med??) I'm just now getting to the point where I don't self-monitor all the time. Back to walking 2 miles/day, taking a 35 minute nap in the afternoon, and really watching my diet (I have gained about 20 pounds :( I'm retired (64) so it's also important that I keep busy and involved -- if I don't (or during off times for my activities) I get very moody and irritable. I feel very lucky that I got my ICD and meds when I did and that I'm doing well with them -- but at times, it's still hard to accept that my presumption of living well into my 80s hasn't happened. (I had no symtoms except tiredness and weight gain prior). Sometimes it's hard too because I am so active and "look good" that people assume I've been "cured" and don't realize that this is something we will live with from now on. Thanks for sharing your thoughts -- laura

ckgoduto

I have cardiomyopathy too and found that we are in the minority on this site. I still continue to log on to see whats new and find out how my friends are doing.

What you ladies have said is so true. I, too , look good from the outside but know deep inside that I'll never reach my 70s or 80s. My goal is to reach at least social security age which is 66 for me.

I also am involved with another site that is ONLY cardiomyopathy patients, both men and women. Go to cardiomyopathy.org homepage and to the Adult Cardiomyopathy Forum.

Twndd

Hello everyone with Cardiomyopathy. I am glad I found this group. I would love to connect with more like us. Some times I feel like I am an alien from another world. I have had ICM for almost 9 yrs. Never thought I would make it this long. My EF started with10 and I was in CHF. Now they want me to think about an ICD. My Ef is now around 30 I too am worrying about the affects all the so called "good meds" are having on my system after all this time. I hope you all will contact me so I can feel like I belong to a group that understands how I am feeling. Thanks for being there. Donna

hipmama42

Add me to the list of lonely dazed and confused recently diagnosed ICM members - I just joined this group, was diagnosed 3 weeks ago after being rushed to the ER with what I thought was a bad asthma attack during a long bout with bronchitis, expecting to be treated and released and sent back home as had happened with past asthma attacks...only to be told by the E.R. doc that I was suffering from severe CHF and must be admitted to the hospital immediately for evaluation and treatment. I was stunned and couldn't really wrap my mind around this sudden diagnosis, or the fact that I had likely been progressing to this point for years without knowing it.

i am 52, and unlike many of you, have suffered from a number of chronic illnesses over the last 25 years that required many meds and constant monitoring, with the occasional hospital admission.
Asthma, (difficult to manage type) bad back, arthritis in almost every joint, fibromyalgia and chronic fatigue syndrome for the past 10 years or so.
I have always worried about the meds doing long-term damage, and it seems that maybe the NSAIDS I took in mass quantities for the arthritis and fibro pain may have had a part in this....I also have an arrythmia, left BBB in addition to the left ventricular hypertrophy.

It seems surreal to me that I am saying all these weird medical terms and test procedures and names of heart meds I'd never even heard of up until 3 weeks ago when I was still blissfully unaware of the condition of my heart. Because I had chronic fatigue and fibro, I was always tired, weak, mentally foggy and aching in every joint and muscle. Any cough I had could be explained by my asthma. It may be that my lungs were damaged by years of severe asthma - and I may have pulmonary hypertension - it could have caused or contributed to the heart failure - and now I am reading some reports that CFS causes or is caused by - there is an interconnection between the two - CHF. Or, the same virus that some believe causes chronic fatigue syndrome may have also targeted my heart and caused the cardiomyopathy.

So many questions...so few answers, i only know that I came home shell-shocked and not knowing where to turn for support - my family seems in denial and are used to me being tired, exhausted, with little stamina, yet looking pretty good on the outside most of the time - that they don't seem to realize how serious my diagnosis is, or that I must now make my health a number one priority. Really, I don't have anything new to get used to other than the idea of having to worry about one more health challenge. I was already having to take a fair amount of meds, on some vitamins and supplements, a member of numerous other support groups for fibromyalgia and arthritis etc., - and I was always exhausted and struggling just to take care of my two boys and my house. I have not been able to work for about 3 years now...due to the fibro pain, exhaustion, and lack of energy and stamina - not to mention the brain fog.
I have already been abandoned by long-time friends, seen as an invalid/hypochondriac, a social isolator, and someone who must have done something wrong to attract all of these health problems into my life.

I thought that this CHF diagnosis might actually sound more "respectable" and believable to them, because they all but came out and told me they thought I was just a slacker and using this fake fibro thing to get out of working and socializing. But now I find that I am even more of a pariah than before, because so few people seem to know any women with CHF.

My EF is between 20-25, I am on about 6 heart meds,
and my new cardiologist is recommending the ICD if I don't show any improvement after 3 months.
The angiogram showed that my arteries are clear and in excellent condition, and my cardiac enzymes normal. They aren't sure what is causing my high pulse and bp - my former internist just said I was borderline and she wanted to keep an eye on it before putting me on more meds, given the number of meds I was already taking for everything else!

I have enough family probs with my two kids and elderly father to look after. I was the family caregiver in spite of being so sick these past few years, and except for worrying over every little twinge and pain in my heart region (hard to tell when I have so much fibro pain which is the real thing) and worrying over the salt and fluid restrictions and low bp with the beta blocker that nearly makes me pass out - nothing has changed at home and I still have a crisis a minute to deal with. The hospital sent me home with the Rx and instructions to take it easy, control my stress, and see the cardiologist in a month. Oh...and totally change your diet and lifestyle. Even my exercise instructions were vague - "exercise as tolerated - no restrictions."
"oh, maybe you should hold off on the marathons for awhile though..." ha ha ha. I can barely make it around the Super Wal-mart without collapsing from exhaustion. My fibro and arthro pain have made it hard to get the cardio exercise I need - and I am forbidden to take NSAIDs for pain - just Tylenol and my Cymbalta.

I am rambling on here because I am grateful to have found a few people who "speak the language" and understand what it feels like to have your life and reality instantly changed overnight - even though you may have had ICF for years. I have been sick (and tired) for years, but this is a stunning diagnosis that I was not prepared for and had no clue of until my ankles and hands started swelling 6 weeks ago when I got a bad viral flu.

If it is any reassurance to anyone out there, I have had to take meds for asthma for a long time, like over 25 years, and for the most part have not had any serious side effects from them - ditto the meds for my mental health condition. I know that obsessing over possible long term complications or problems keeps me from enjoying the present, and causes unnecessary anxiety. Like others have said, I believe in keeping busy and keeping the mind occupied - I just wish I could quit obsessing over every little thing about my heart - but I suppose that is normal in the first days and months after diagnosis. Hard not to obsess about one's prognosis...and whether or not the meds will continue to work, or whether they will damage something else...

oh, and there's always the possibility that ICM is a part of some other bad disease or condition like lupus.
I have a number of symptoms that fit lupus diagnosis so cardiologist will be running tests for that and RA as well....

I am overwhelmed and it all seems surreal. I am glad to have found this place where I can vent my fears and ask questions. Its weird the way the hospital boots you out the door, and you are then on your own until the first scheduled visit with your cardiologist...not knowing if you are doing well or not, unsure of whether or not you are on the right meds at the right doses, obsessing about your bp and pulse and wishing you had an ECG at home so you could detect your arrythmias during your sleep.
I feel grateful to have had this detected at this point before I had an MI or endpoint CHF. None of my former docs suspected it, and I wouldn't have guessed it because of my fibro and chronic fatigue syndrome, with the symptoms being so similar.

I am trying to stay in the day and stay as positive as I can. There is so much to learn and accept about this disease!

nanamo

well i have lived with it for going on 10 years next month. when they firts told me i was like okkkkkkkkk then i went home researched it and read about and edcuated myself to what i was just told......my life was changed for me at the age of 32........ sometimes i get so mad at my disease then other days i'm like oh well what the hell not much i can do i know about the meds and for 10 years i have been on off and taken so many and i to wonder what would happen but they have become my daily life....Cardiomyopathy is just a word to me now..........i wear my id bracelt i take my meds and i pray to the good lord for just one more day just one more day with my loved ones .....we are here on the boards but we all have icd,Cardiomyopathy medciations i try to give on all subjects .............

just LIVE


god bless
surviving heart disease one day at a time
with trigger 04/08
for 10 years
nanamo

Julie5

Well Hello Everyone!
I can't say I'm glad to know others have cardiomyopathy, but I am happy to meet all of you!
I've been on this site for almost 3 years and we do seem to be in the minority. I was diagnosed with hypertrophic cardiomyopathy in 1998 when I was 36. I didn't think much of it because I had always been athletic and was still able to continue all of my activities. They tried me on a low dose beta blocker but ended up taking me off of it. But then almost 3 years ago I went into Vtach (240bpm!) and barely made it to the hospital. Over the next 2 months I got an ICD and had ablation done on my left ventricle. I ended up have two episodes of being shocked - first, I got 5 shocks, and 2 weeks later I got 19 shocks in a row. I was quite "shell shocked". It took me a year to start feeling more normal and getting my energy back (I take 3 different meds) and it took me at least that long to not be fearful of being shocked. I function pretty well. I can exercise, but not to the extent I was used to. My life has changed dramatically, as all of our lives have! It's still difficult at times to get used to the new normal. It seems we cardiomyopathy folks are in the minority, but it also seems that there aren't a whole lot of people I've heard from who have gotten shocked by their ICDs. I would love to meet anyone who has experienced shocks and how you've handled the situation. So glad to hear from all of you!
Julie

Carolanngel

Someone on this site wrote this....sorry not recalling her name....but.....I keep a copy of it in my pocketbook................


I wish they had told me that heart disease is just as painful emotionally as it is physical. That many men feel those emotions compelety differently from women.

I wish they had told me that you need to fight depression as much as you need to fight heart disease.

I wish they had told me that most of the people in our lives are wonderful and will try to understand what we are feeling. But, they really can't identify with our feeling like we may have had a death sentence.

Most of us don't look any different today than we looked before our diagnosis. Our families and friends forget that we are not really the same. We don't have a fever, cough or cast. We have lots of meds that have side effects. We have a healthy dose of anxiety. Many of us have fear or are not able to do much physical, we are trying to find our limits

I wish they had told me that heart disease is just as painful emotionally as it is physical. That many men feel those emotions compelety differently from women.

I wish they had told me that you need to fight depression as much as you need to fight heart disease.

I wish they had told me that most of the people in our lives are wonderful and will try to understand what we are feeling. But, they really can't identify with our feeling like we may have had a death sentence.

Most of us don't look any different today than we looked before our diagnosis. Our families and friends forget that we are not really the same. We don't have a fever, cough or cast. We have lots of meds that have side effects. We have a healthy dose of anxiety. Many of us have fear or are not able to do much physical, we are trying to find our limits

(I think this says it all.)

AZMommy

I'm at 8 weeks into my diagnosis of dilated cardiomyopathy with CHF. I take 5 medications (mostly 2x per day) and 3 supplements-these were ok'd and encouraged by my docs. At diagnosis my EF was 20 and last week I reached an amazing level of 38. They don't know how I managed to 'catch' caridiomyopathy other than genetics and maybe somthing that I caught as a kid.
I wonder everytime I open my med bottles what the long-term effects of these could possibly be. I don't think that I would wonder as much but I still have a long life ahead of me as I am only 30. Perhaps this will be my project for the next few days...research on the long term effects of basic cardiomyopathy medication for sustaining life.
I find my anxiety level that is now a major concern for myself and my docs. My biggests (and most validated) fear is that I will go to sleep and never wake up. They have me max doses of xanax 3x per day for the next week and already I am 'The Zombie Mommy" Things ALWAYS get better. If I have a bad day or three, I know that at some point, I will have an amazing day that makes up for the crappy ones.

LadyLisa

Happy Sunday All,
I've been on this site for a week or two now and am thankful to have a group to vent to. I was diagnosed almost five years ago with familial dilated cardiomyopathy. I've always wondered about the drugs, but when you consider the alternative it doesn't seem worth thinking about it. Between the heart meds, lasix, chloresterol meds (yes my mom's family has high chlosterol too) and omega-3's I think I pop close to 10 pills a day. That said, I watched my mother die from this disease before they had meds (back in the 80's) so I'm happy that there's a solution to slow down the progression. A few months after I was diagnosed my sister was diagnosed (when she was 9 months pregnant) and had a heart transplant about 6 months later. I have been told that my EF is not likely to go up but it will hopefully maintain. I was at 40 for a few years however recently my number dropped to 36. So after taking a year to adjust to the meds and after settling into a new way of life, Bam, something new to deal with. Initially the cardiologist wanted to implant an ICD (I've had some vtach) but told me that because there isn't any scar tissue from a heart attack I should be ok until I hit 35. Well it's been several months since my echo and muga scan so I can't help but think, ok, I must be at 35 now if I dropped from 40 to 36 in a year. On top of that, they changed my Cozaar to Atacand and I'm much more light headed with headaches (feels like from lower blood pressure). It's very annoying. So now, after five years, I wonder about my other organs (I've heard some of the meds have a harsh affect on the kidneys) but I'm thankful for the extra time I've had.

HeartFailureDiva

Well I'm waiting to see my Cardiologists in a few weeks. I have a Enlarge Heart and Fluid On Both of my lungs. I also have diabetic Mircovascular Heart Disease & Coronary Ischemia Syndrome. My Sister is 34 and she was diagnosis with Cardiomyopathy and she drinks with her;s and I try to talk to her about taking her meds and she said's to me that it will go away and her's did. Well I'm worried about the enlarge heart I will find out if it's Cardiomyopathy.

Patybluetx

Hi everyone!

I've been on here for a little over a year (though I don't have the luxury of logging on as often as I used to :) ) and I too have cardiomyopathy. I have what's called peripartum cardiomyopathy and have been able to recover. I was diagnosed at the age of 26 after my emergency c-section. Long story short...I was 38 weeks pregnant and went into labor and delivery presenting with what they call bloody show. When they plugged me onto the monitors they saw that my BP was thru the roof and they couldn't find my daughter's heartbeat. After an ultrasound that revieled she had passed I began to go into full blown congestive heart failure. The truth is my heart failure and loss couldn't have been prevented if my doctor would have taken my symptoms seriously but she didn't. On the upside I got a wonderful cardiologist that put me on the right path to recovery and within 3 mos. my EF was 65% (a great improvement from 10-15%) and now I lead a heart conscious lifestyle and am trying to get pregnant again after almost 2 yrs of hard work getting my body, mind, and soul back together again. My current EF is 71% and I'm completely off meds. But I've kept myself in the low sodium, low fat, low cholesterol diet and do at least 45 mins of cardio a day. It's been a lot of work, but it's worth it :).
As for the emotional aspect of it....WOW, yeah way tougher than anyone would expect. I ended up getting a therapist and that helped immensely. At least it made the panic attacks go away. Tho I still have a panic attack here or there and sometimes I still have blue days. Still, it's not like it used to be. I remember feeling like I was in a dark cave with no way out. I used to feel completely helpless and broken.

I hope ya'll find a way out of your caves.
((HUGS))
Martha

ktbmom

I, too, have idiopathic cardiomyopathy. My mind always wants to wrap around the "why did it happen, or what did I do to get this" and there is none.
I am fortunate/unfortunate that I am only on one "heart" drug, Altace, but all the others to raise my EF cause severe wheezing (asthma). I am, however, on two different daily medications for my asthma and a rescue inhaler, along with nebulizer treatments (which are hard on the heart).
When my EF went down 5% in a years time, it makes you kind of wonder if everything you are doing is really worth it, but then I look at my children and say yes. BUT, there are days that it seems that the doctors cannot do anything and everything you are doing to help raise the EF is not working.
I feel terrible when my kids ask me to go out and play kickball and ride bikes or go on rides at the fairs. I have to tell them I cannot and feel so lousy. I just want to cry because I am so restricted in what I can do with my kids.
Also I read posts where people say that had an ICD placed and raised their EF tremendously. I have had mine for a year and my EF has gone down. That is also depressing.
Life is so precious, but at times I feel like what is the point of all these medications and their side affects. I know I cannot live with the medications and so I continue to take them.
When I complain to my husband, he understands how I feel and lets me vent without thinking I am suicidal. He knows how frustrated it can be at times, although he is as healthy as an "ox."
Sorry I have rambled on and on, but it is nice to know that others feel the same way.
Like the "you know you have heart disease when" your mother (74) only takes daily vitamins and has not been to a doctor for even a cold in years and has never gotten a flu shot and then I take all these different medications.
Thank you for being here ladies.

Winglover

Hello,
I'm sure most of you know our story. I joined this wonderful site about 5 months ago searching for someone, anyone that was going through what we were.
My son was 15 when he was diagnosed with DCM. I was looking for some insight into what he was going through and some moral support. And thankfully I found that here! He was initially told he would need a transplant within months. We were not the lucky 1/3 that spontaneously recover and hope to remain in the middle 1/3 that are maintained on meds. It has been 16 months now and his EF remains 20-23%. He is back in school (a senior this year) and learning to adjust to his new life. He takes 15 pills/day to keep his CHF and Asthma in check. He looks good which does make it hard for people (including his Dad) to remember that his heart is indeed not. I am a critical care nurse and have recently returned to work after being home the past 18 months. Glad to know all of you.

Lisa

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