Drugs abd Heart Failure

[Inthava]

I was diagnosed with cardiomyopathy a few months ago.  My Doctor has asked me to take lisinopril 2.5 mg. twice a day and coreg gradually increasing that to 25 mg twice a day.  Right now I take 18.75 twice a day.  I have been extemely fatigued and have a lot of difficulty getting through 30 minutes of aerobics of some sort.  I do about 15 minutes on a recumbent bike and 15 min on an elliptical machine at a very low level. I am so frustrated that I have not made any progress. It was been about 6 months at this point.  Do these drugs cause increased fatigue or activity tolerance?  If so, will this decline over time to where I can do more?  I really thought I would be fine by six months if i worked hard and took all the drugs and so forth.  I also take amiodarone, demadex and electrolytes.  I still do have some fluid retention but it is a lot better.  Is this likely to be a life long battle?  I just cannot accept this poor activity tolerance and want to know what else I could do.  I am willing and committed to doing almost anything to get my life back.

Thanks for your insight and help..  I have found so much helpful advice on this website.  It is an incredible service you provide but as with anything free, it probably will not have a lasting presence.

[CCF-M.D.-MJM]

Hi Inthave,

Sorry to hear about your recent health concerns.  Cardiomyopathies are not easy to understand and they act very differently depending on the cause.  When you hear someone say they have a cold, it may be a stuffy nose, headache, fever, or any number of symptoms.  Cardiomyopathies behave very differently as well.  Some people develop very severe but short lived events probably virus or a pregnancy.  They be severely affected at first, but slowly recover.  Some people develop symtoms very quickly and are incredibly symptomatic, others develop symptoms so slowly over years they don't even notice that something is wrong and think they are just getting old.  This is a long winded way of saying that is very difficult to predict response to medications and progression of disease.

Do these drugs cause increased fatigue or activity tolerance?

beta blockers like coreg can make people feel fatigued.  that is why your doctor is slowly titrating coreg to 25 mg twice a day.  There is GREAT data about coreg protecting you from future heart failure related events, so I would encourage you to keep taking it and discuss anythoughts of discontinuation with your doctor first.  some people can get acute ill if they stop their beta blockers.

If so, will this decline over time to where I can do more?
if your fatigue is from your coreg and not from the heart failure, it is difficult to predict when these symptoms may lessen.

Is this likely to be a life long battle?  It is likely this is a life long problem.  there are a few types of cardiomyopathies that can get better--like pregnancy related--but time is your only answer.

I hope you feel better soon and try not to be discouraged.  It sounds like you and your doctor are doing the right things.

[Inthava]

Does anyone know of a company that makes INR home monitoring machines similar to what diabetic use?  I don't want the kind where you do the test at home and send the results to the company.  I want the kind that I can do at home and call my doctor's office with the result and how to proceed with the coumadin.  I really don't want a middle person when I feel competent to do this myself and follow up as required with the MD.

[Carolina03]

Try researching your question on ValveReplacement.com -- they have a helpful area on blood-thinners from people who take them daily. (And you don't have to have had a valve replacement to ask questions, etc. The community is great).

All the best,
Carolina

[mmfd]

I am so sorry to read your post.  I, too have CM, diagnosed in June, 2002 with an EF of 15%.  Which type do you have??  There are several different ones.  I have idiopathic dilated CM. There is a lot of hope though.  My EF is now up to 45% with the drugs, diet and exercise.  The Coreg does affect exercise tolerance as the doctor stated.  Progress may be slow as in my case, and I would've had trouble doing 30 min. of aerobics only 6 months after diagnosis.  I know it is difficult not to push yourself.  I was only able to get up to 12.5 mg of Coreg twice a day as my BP ran low with systolic less than 90.  I am just very sensitive to all the cardiac stuff.  I still only take 2.5 mg of the Lisinipril.  I was told the most important factors in getting better were taking the right drugs, watching the sodium strictly, exercising as best as you can without overdoing it, and a positive attitude.  Can't help you with the INR machine as I still go to have it drawn every month, and it is close by so I don't mind.  I would think that those machines are kinda expensive.  Hope this helps, and of course, these comments are only  MY OPINION.

[Inthava]

My story is long and complex.  But after a couple of open heart surgeries, arrhythmias and so forth, I suddenly developed heart failure after having done well with the surgery.  My EF was 30%, down from 55%.  I was devastated. No one could tell me what the cause is but instead they believe that it is multifactorial which is the short version for they don't know. I now have a biventricular pacemaker and ICD.  I was so looking forward to getting back to normal that it has been very hard.  I do exercie every day whether I feel like it or not.  I make myself go through the routine as much as possible because I know that is the most important thing I can do.  I take the drugs.  My BP has been in the 90's to 100's systolic which is fine for me.  I do not adhere to the low sodium diet but do watch salt intake.  The low sodium diets are disgusting to me and I have never been able to tolerate them.  I do think I have a positive attitude but it is hard to not get depressed when it is so difficult to be active and stay involved.  I do work full-time and actually have three other part-time jobs so in any given week I can work from 60-80 hours which is a problem but something I have to do.  

Sounds like you have had your share of difficulties as well.  It is amazing how many people suffer from heart failure.

[lak]

My cardio just told me that I have CM with an ejection fraction of 47%,they tried eblation and failed so they put me on Hyzaar for high blood pressure and atenol for severe arthymia and PVC's. Then more or less told me not to worry about it.  He never said he needed to see me yearly or any follow up.  Now my regular physician just rewrites my scripts like its nothing.
I am only 47 years old and my ejection fraction has improved somewhat.  The last time I was seen was last February and my ejection fraction had gone up to 52%. A year and a half before it was 47%.  I only go when the pain is really bad and now I just ignore that too.
When I read posts about CM I wonder which kind I would have with just low normal EF. left bundle branch block and thousands of PVCs in a 24 hour period.

Anyone have any comments

[DottyCece]

You EF sounds really good.  At 47%, I doubt that the cardiologist would follow on a regular basis unless you  have persistent cardiac problems.  You primary care physician can monitor your progress and refer you if he sees anything going on.  Of course, there should be no reason why you couldn't make a follow up appointment with the cardiologist if you feel that would give you peace of mind.  I would if I were you.  If you keep your blood pressure down as far as you can tolerate, exercise daily (minimum of 30 minutes), keep you weight down, avoid stress (that's a joke) and so forth you should be okay.  The bundle brance block can cause a decrease in EF.  That was true in my case.  A bundle branch block was created by the pacemaker which decreased my EF significantly.  I now have a biventricular pacemaker and my EF is up some which is very good.  I will always have problems I am sure but things are certainly better now than six months ago.

[DottyCece]

You EF sounds really good.  At 47%, I doubt that the cardiologist would follow on a regular basis unless you  have persistent cardiac problems.  You primary care physician can monitor your progress and refer you if he sees anything going on.  Of course, there should be no reason why you couldn't make a follow up appointment with the cardiologist if you feel that would give you peace of mind.  I would if I were you.  If you keep your blood pressure down as far as you can tolerate, exercise daily (minimum of 30 minutes), keep you weight down, avoid stress (that's a joke) and so forth you should be okay.  The bundle brance block can cause a decrease in EF.  That was true in my case.  A bundle branch block was created by the pacemaker which decreased my EF significantly.  I now have a biventricular pacemaker and my EF is up some which is very good.  I will always have problems I am sure but things are certainly better now than six months ago.