Should we be doing anything else...CHF 15%ejection

[laurieo]

My husband is a 40 year old male..recently presented with shortness of breath...upon several tests they sent him for a heart cath. No blockages,cant stent, because it is purely cardiomyopathy. He is on lasix 2x per day, norvasc, coreg twice a day and an ace inhibitor. I just want to know what i should be preparing myself for. The cath revealed 15% ejection but he is not symptomatic in any other way besides the shortness of breath..no swelling, fluid, diabetes, etc...What is the criteria for transpant as far as EF%? We have a follow up appt next week but i like to be prepared. He is so very young it just seems so unfair right now. Will he be able to return to work? he is in sales. Is this a death sentence? We have four very young children. His father died in his fifties of CHF but didnt take care of himself...which leads me to the next question...sodium intake...is there a safe # of MG that he can have or are we aiming for zero? I am not talking about adding salt to anything, but many things already have them added? Any help or advice is appreciated.

[Cleveland Clinic]

laurieo,

I'm very sorry to hear about your husbands diagnosis.  Things like this can be very overwhelming. It will take awhile to process the information and make adjustments to the diagnosis.

Most likely your husband has an inherited form of cardiomyopathy, given his fathers early disease.

The good thing for him, is his complete lack of symptoms.  I would seek evaluation with a hert failure specialist at an academic center now. That way he enters the system, and will have connections if things change.  There is no discrete ejection fraction based transplant criteria, generally it is based more on severity of disease with symptoms and functional status.

As long as he is able, he should continue his normal life's activities without restriction.  I would definitely limit salt and water intake and reading labels to try to minimize salt intake.

Things to ask your doctor would be about the to make sure he is on maximal doses of ACE inhibitors and beta blockers before adding or titrating the norvasc further.  The norvasc probably isnt helping too much, and aldosterone might be reasonable to add to his regimen in lieu of that agent.  


Lastly, if his father died suddenly, another thing I would talk to your cardiologist about would be the issue of an implantable defibrillator.

As I mentioned, new diagnoses and interactions with the health care system can be very overwhelming, especially to those that have not been involved with it in the past.  There will be alot of opinions and options. Ask alot of questions, take notes and seek answers.

good luck

[laurieo]

oops..typo should be 5 children and I am actually pregnant and this is INCREDIBLY stressful right now.

[Dr. Erik]

First of all, I assume that an Echocardiogram showed the ejection fraction as a Heart Catheter does not determine one's ejection Fraction. I'm very sorry that this has happened to you and it must be a shock to you and your family. Sometime's things like this happen with no explanation and it is truly unfair. But don't give up hope! Follow up on every option you have and get second opinions and go to a larger medical center perhaps a teaching hospital for the second opinion.Modern advanaces in medicine have turned what used to be death sentences into something that can be treated successfully. I'm not sure what could be done outside of a transplant, but if he does need a transplant there is a new machine he could be put on to do the work of the heart while he waits for his transplant.

Most importantly, have you accepted Jesus as your saviour? He is the way to God and through him all things are possible. Ask Jesus to come into your life now and he will. Pray for your husband because only God can heal him. I will pray for your husband. Best of luck to you and may God help you at this difficult time. Keep all of us on this forum updated please.

Erik

[pms_barbie]

Are you sure a heart cath cant tell your ef?  Because I had a hear cath and they said my ef was 60%.  Maybe I had a little more than a heart cath because they went into my left ventricle to check out my mitral vavle.?

[laurieo]

they did that with my husband as well...they went into the vein and artery and determined it to be around 15%

[Dr. Erik]

I apologize. I should have re-worded my comment. Using an Echo is the most common way to meaure the ejection fraction. It can be done during a catheterization as well.

[Big Mike]

I'm new at this and have been diagnosed with CHF possibly caused by Afib.  @ EF given - 15% and 25% by 2 different Drs. after tests.  Waiting for next appt in 2 wks to find out something.  Lot of ?? not many answers yet.

[Dr. Erik]

From a previous post you stated that your EP told you not to take CoQ10. Do you know why he told you not to take it? Today 5/6/04 under the topic "Fish Oil Revisited" which was originally posted on 5/2/04, "Nextrox" made a comment today about taking CoQ10 and that you should question your doctor about it. He gives a link to read about the effects of CoQ10. It states that people who take Statin drugs have lower levels of CoQ10 and this can lead to Heart Failure. I take Zocor and I am worried about whether I should take CoQ10 to keep my levels up. I'm am truly scared now. what do I do?

[pms_barbie]

I have no idea why he told me not to take it.  Maybe because at that time I was taking tambocor.  I will ask my cardio maybe he will have an answer.  I have always read og people taking this supplement.  I cant figure out why he doesnt want me to take it.  However I will ask and get to the bottom of it.  When I find out I will let you know.

[Dr. Erik]

Under the Topic "Fish Oil Revisited" from 5/2/04, someone made a comment that Statins can cause Cardiomyopathy which can lead to Heart Failure and he provided a link to a web site. It states that Statins deplete CoQ10 levels which cause Cardiomyopathy. The doctor who developed the web site said he sees two to three new "Statin Cardiomyopathies" per week. I take Zocor and I am very worried now whether I should be taking CoQ10 with my Zocor. Is there any truth to this theory?

[knicks30]

May i ask what caused you husband's heart failure? Was it hypertension? Viral? autoimmune disorder? idopathic?

Im sorry to hear about your husband..thats really sad but don't ever give up hope! All you need to have is faith!

[laurieo]

They are assuming idiopathic at the moment...we did vacation in another country in august and we both came home really sick...bad virus..the only other thing they can come up with is that it attacked the heart or it is inherited from his father who died of CHF in his 50's ...just a horrible situation for us right now. Thanks for your positive thoughts.

[Clenn Camp]

If you use any salt at all be sure it is CELTIC SEA SALT, not just sea salt, but CELTIC SEA SALT.

I have high blood pressure and three different cardiologists and two EP's have told me about the CELTIC SEA SALT. They say it will not retain fluids in the tissue as table salt will.

Glenn

[laurieo]

THANK YOU!

[Kimma]

why is salt so bad??? i have low blood pressure so i was told to INCREASE my salt intake. i already eat ALOT of salt. does it effect your ejection fraction in any way or just raise your blood pressure???
kim

[laurieo]

Salt causes your body to hold onto fluids and in CHF patients that is really bad because they surround your heart making it harder for it to work. My husband doesnt exhibit signs of swelling typically associated with this type of heart disease as of yet but they do keep him on a lacix twice a day to prevent the build up of fluids.

[mmfd]

I don't know who you have spoken with that recommended celtic sea salt, but it still is LOADED with sodium.  I did a quick google search and found that it also has something like 80 additional elements and minerals.  This may be excellent for a patient who has no heart failure, but it is still POISON for people with CHF.  Salt is salt is salt.  The amount we *add* is only 10% of the total amount the average American consumes.  Please don't go recommending salt to people on a cardiac website!

[mmfd]

I don't know who you have spoken with that recommended celtic sea salt, but it still is LOADED with sodium.  I did a quick google search and found that it also has something like 80 additional elements and minerals.  This may be excellent for a patient who has no heart failure, but it is still POISON for people with CHF.  Salt is salt is salt.  The amount we *add* is only 10% of the total amount the average American consumes.  Please don't go recommending salt to people on a cardiac website!

[Clenn Camp]

You've completely missed my point.

You stated in the above post that .... "I don't know who you have spoken with that recommended celtic sea salt, but it still is LOADED with sodium."

If you would pay attention to my post instead of trying to 'dress' me down for recommending CELTIC SEA SALT, you would see that I said . . . "three different cardiologists and two EP's have told me about the CELTIC SEA SALT. They said it will not retain fluids in the tissues as table salt will."

Depends on what kind of heart problem you have as to whether you can use salt or not.  Not ALL heart problems require abstinence from using salt.

Sodium is one of the required electrolyte. I'm not advocating using salt for people who cannot consume it who have certain kinds of cardiac problems.

Glenn

[Clenn Camp]

I forgot to point out to you in the original post about salt, that I said.... "if you use any salt at all".  This certainly did not imply in any form or fasion the usage of salt for those with CHF.

Just calm down a bit.   Elvis has already left the building.

Glenn

[rikku]

Amen to what Eric posted.

God is the great Physician, and Faith in His son Jesus can work miracles. I have seen and experienced them.

I also will be praying for your husband.

And as others have said, do NOT give up hope, What soever you ask , believing, you shall receive.

Also I beleive that GOd uses doctors, and medicine to heal. Without Him none of the medicine or the knowledge would be here.
Seek (as the doc here suggested) and you will find. Take HOLD of faith, and recieve the promises of God through Jesus CHrist.
Ask Him to come into your and your husbands heart so you may be saved. I pray that you will receive the message that God has for you right now. Just go to Him in prayer. He is right there, just waiting on you.

[SteveB47]

I'm not sure that this is going to help or not.  But, here is my story which is simular to your husband's.  About two years ago I started to feel faint and seemed to almost pass out.  I had an EKG which showed I had AFib which did not seem to be a big deal to anyone including me.  The Dr. deceided to do an ultrasound to see if there were any other problems before proceeding with the cardioversion.  The ultrasound showed major remodeling (enlargement or dialation) and an EF of only 15%.  I was devastated as I was only 45 yr. old, and been very active with 3 kids.  I wasn't afraid of dying, but I kept thinking "My poor kids".  I was put on a beta-blocker (Correg) and an ACE inhibitor and for the next 3 months felt like hell.  The combination of the BP meds and heart problems made my life miserable.  I would smile at people without even knowing that they were there.  To make a short story long, I stayed on these meds for the last two years and my EF has improved from 15% up to 40-45%.  I still work, and chase my kids around the house.  I still feel tired and sometimes feel like I was kicked by a mule but my kids still have a father.  So the whole point of this long winded story is not to give up hope.  I've heard of a lot of good things about Beta Blockers (including myself). Give your husband time.
Good luck.
Steve