cheri.

[cheri.]

My 44-year-old husband was recently diagnosed with congestive heart failure, (fluid in lungs) coronary arterery disease and cardiomyopathy, after a 4-day stay at the heart hospital. He had a stent placement, but his cardiologist said it doesn't account for the poor condition of his heart. The cardiologist who did his heart cath said my husband's heart is like a four cylinder car engine operating on two cylinders. He surmises that he has had one or more "silent heart attacks," but the cardiologists aren't sure. His ejection fraction is 20 percent. He also has an irregular heart rhythm. The cardiologists are now evaluating placement of an implantable difibrillator. My husband still plays golf and is in a high-stress job. His worst symptoms are at night: he can't sleep and gets up every night and sits in our walk in shower with the shower running on him to relieve his stress and chest discomfort. He was precribed the following medications upon his release from the hospital: Coreg, Lasix, Potassium, Plavix, aspirin, Zestril and Crestor. He is a Type A personality and he doesn't like to go to doctors.

My questions: What should we ask his cardiologists? He was placed on a Holter monitor and will get another ultrasound to evaluate his ejection fraction. My husband is back to work, 100 percent with all the stress, and crashes at night. We live in a very rural area and I am concerned because we can't even get 911 service.

Any suggestions and advice are most appreciated.

[often]

The sodium issue is HUGE...making it a family project to cut down is great.  Since he has had issues with fluid already...the biggest thing you can do is not buy any, and I mean any, prepared foods.  A pain yes, but if it comes in a box or a can it is probably loaded.  You really have to read the labels now.  And remember that they are listed as per serving and a can of soup can have 3 servings.  For veggies, the best bet is fresh...but frozen with no sauces would be the next.

You will hear this so much....cut the sodium...but it could be the biggest factor towards improvement.

Also, most meat in grocery stores has been "flavor enhanced" ...which is another way of saying injected with a saline solution.  If you can find meat chicken etc that has not been "injected" you will save about 250 mg of sodium that would allow him to have something else.

Keep us posted....

[cheri.]

Thank you for your comments. I am so glad to hear that his ejection fraction can improve. We are still waiting to hear from his cardiologists to determine if he needs an ICD. He has only been on his meds for three weeks, and we are hoping that he will improve.

We have made it a family project to cut down on the salt. I know that is a big issue as my husband was given an IV while in the hospital to remove fluids in his lungs. He does sleep very poorly at night, but he does work full time at day now.

I think this is a "one day at a time thing."

Thanks again for all your input.

Cheri

[often]

I have chemo induced CHF.  At diagnosis I had a 10% ef. I fought the bi-v/ICD because I was concerned about having the defibrillator...was afraid it might go off...go figure.  When I gave in and allowed them to implant (ef up to 20%) I had immediate improvement in energy levels from the pacemaker (my ventricles were not beating in sync and were making my heart work too hard..once they were equalized...what a diff!).  The ICD has never fired, but I know it is there, should I need it.

I think that the stats you read about are still somewhat outdated.  With the new meds and devices, we have a much better out look on life expectancy.  I am not sure how long he has been on the Coreg or what dosage, but Coreg will mimic the disease's symptoms and there is a lot of fatigue until he is used to it.  It took me over a year to titrate up from the initial 3.125 mg x 2 per day to the 25 mg per day.  During that period, each time we increased it,  it was not unusual for me to sleep 20 - 22 hours out of 24 on the weekends.  Honest.  That is not an exaggeration.  I also work a 40 hour week and there were days when I called in late, and slept in.  

It is a little over two years since the bi-v pacemaker/ICD was implanted.  My ef at last check (January) was at >50% and my heart had gone back to normal function/normal size.  I have, as a result, been able to cut my Coreg in half.

I agree that maybe he would want to look at replacing the Crestor.  There are many statins out there and sometimes it takes some trial and error to get the right med.  I take Lipitor and have no issues with it.  Keep a list of all his symptoms and discuss with the docs to see what meds might be causeing what side effects.  

Unlike Jack, I do not consider this a "tragedy".  Give the Coreg a chance to work, titrate slowly to reduce the fatigue.  Know that if you overdo on the good days, you will have 2 rough ones to make up for.  Give in when you can.  But look forward to better days.  

Given time and proper diet, etc...I think your husband will feel a lot better.  I would ask the docs to explain the purpose of every med they prescribe and what the side effects might be.  That way he will be prepared.  Do not be surprised if you get a few "we don't know why it works, but it does".  My docs are a U of MI and I got that regarding a couple of meds.  My doc is up on every new study out there, so I did not consider it a cop out.

Keep the faith, there is no reason you and your husband won't be dancing together at the girl's weddings.

[viennaustria]

Yes this condition can be reverse. I had 20% EF one point at age 53. On medication it went up to35% soon, 3 months maybe. A year later it was 45%. Now 3 years later it is 65%-70%

I never smoked. Had partly healthy lifestyle exercise and diet was most OK, but with lots of stress. I had many coffees a day, so I could have a Type A. personality,this is how I liked it, and needed to be.
I was told must cut the stress, if not I "will go no time".
  
I did quit drink coffee. Sleep 8 hours per day. Work from home .Exercise regularly ,at least two-three hours per day. Watch religiously my sodium intake. 1600 mg per day, maximum 2000mg now...but with 20% I would recommend 1600 mg or less.
Don't forget sodium is there naturally almost in everything.
So you must calculate the sodium in every meal he eats. One meal should have no more then 600 mg.
To reach that most cooking require to be cooked absolutely NO SALT ADDED.  
Hard to cook a soup without salt and I don’t, but then I know exactly one bowl of soup has 2-300 mg,  Forget about can foods for him ,those are the most high in sodium.
Stay away from Chinese food, Kentucky and other fastfood junks.

So don't mistake salt with sodium. This is a very important part.
Some nurses told me just take a salt shaker away from the table.
That nonsense needed much more than that.

I don't have ICD. My arteries are clean.

He could quit smoking, it tells lots of good about his character!
He will beat this!  
Good luck!

[cheri.]

Thank you very much for your comments and advice. My husband said he feels so much better since his stent placement. I can't believe he has such a low ejection fraction and can still function as well as he does every day. He still has a lot of difficulty sleeping at night, and has been scheduled for a sleep apnea study.

He has lost almost 15 pounds since he left the hospital, and is exercising every day. He has also quit smoking.

He is 44 and I am 41. We have been married for 22 years. We have two daughters in high school and one in college. The stats I have read about congestive heart failure, cardiomyopathy, and 20 percent ejection fraction aren't all that encouraging. He has been great about the low salt diet, and exercise, but have you all ever heard about this condition being reversed? The docs haven't given us a prognosis and that is worrying to me. They have said he meets the criteria for an ICD, but the docs want to see how he does with all his meds first.

Thanks again for your comments.

[Jack54]

I am so sorry to hear of this tragedy.

High stress is a killer.....It is addictive to some people.

I have heard of people who feel well with low ejection fractions. I think an EF of <30, is one of the requirements when filing for SSDI. This along with the CHF and Cardiomyopathy diagnoses would make him eligible for SSDI, IF his doctors all say he is not able to work. I tell you this, because down the road he may get worse before getting better. I pray not, but you need to plan ahead. At this point, he is probably too worried to think clearly.

It really does a man's ego in to tell him that he must retire early. It happened to me and I have never mentally accepted it. We need competition to make our engines run correctly and believe it or no, this effects the testosterone level. Some women are the same.

He will have to accept his limitations, and learn/realize all the avenues that can lead to a much healthier, and stronger heart. He must first lower his salt intake. This is key to getting better.

You should be looking at the actual test results of the cardiac cath and the echocardiogram. Politely demand them :) Tell to "whom it may be concerned" that you are starting a file for a possible SSDI claim. In fact, you need to do this. Keep all medical info in a file.

As I was saying the dimensions from the echocardiogram, and the description of his coronary artery stsus/conditions are extremely valuable. You do not want the test results like that sent to his family doc. You want the real thing, like the cath lab report. Especially if you want help from the nurses here. Keep us updated :)

G-d Bless,

Jack

[FLBrat]

Cheri, a few of us here were just like your husband.  Wake Work and Crash.  Some of them were bad enough that the Work part was skipped.  Many have had the BiV implant defib.  Now I Wake Work Recreate and still sometimes Crash. The ICD greatly increased the quality of life for me.  Bear with him, support him as you can.  Help him by making sure the diet is right.  Keep away from sodium (read the labels) and high cholesterols. (HINT: If it is in a box or a can, you probably should not use it.)  If he doesnt like a treadmill like chuck suggested, see if you can get him to start walking with you.  Start around the yard, venture further if he tolerates it.  Tell him it is YOUR new exercise program and you need his help.  It can and will get better.    I'll be thinking of you both.

[Itschuck2c]

Ask the cardiologist about exercise, as in getting a treadmill and start walking, execise will help condition his heart, lower blood pressure and lower stress. The only other thing I would change is the crestor. Many folks dont tolerate it well, its one of the more aggressive statins. Maybe switch it to vytorin. Also a nuclear stress test will show them more about the heart than just an ultra sound.