I am very concerned and worried

[steph14]

Hi my name is Stephanie.  I am asking about my dads condition.  He is a 54 yr. old male.  He is not overwieght, infact right at normal for his height.  Five years ago we learned he had congestive heart failure.  He was hospitalized and test were done.   A heart cath. showed no blockage but a weak heart with an enjection fraction of 35%.  Upon being discharged from the hospitial he was given a series of medication and was told to take them.   Not a lot was explained to him or us. He had no insurance. I for a few months was buying his medication for him until he wouldn't let me know when he was out or wouldn't give me the perscription.  He would say that it should not be on me to buy them. So he stopped taking them. I have watched as dads health has deterated even more, until a week and a half ago.  He started to have "spells,"  as he calls them.  What he explained to me was that he would get really hot feeling all of a sudden sweat, got pale in color, feel dizzy, and even fainted on 2 occasions.  The last worse than the other he went to the ER.  There they admitted him ran blood work, done chest x-ray, EKG, CT or MRI one.  His blood pressure was high and heart rate in the lower 40's. Once the blood work came in they sent him to a bigger hospital, Central Baptist in Kentucky. At the local hospital they were telling us he had a heart attack by the blood work and didn't wait for the other test results.  At central Baptist they repaeted the test and did a heart cath.  DR. stated that he didn't have a heart attack. He was having panic attacks.  We there found that he was drinking a 2 liter or more of coke a day.  DR told him to sstay off of the caffiene.  The heart cath results came back that there was no blockage and even the DR stated that he wished his arteries looked as good as his at his age. And all in the same breath said that his heart was very weak and he only had a enjection fraction of 25%  and even felt that his heart was to weak for any farther testing, and he would never be able to work again, for him to rest as much as possible and make sure he took his medication, not push his self to do anything.  His diagnoses was Cardiomyopathy. He said that he was going to give him a antidepressant with other meds, and it was important for  him not to worry and to be confortable, and that he should be left alone.
To me this has left a lot of questions. Ones I didn't want to ask in front of my dad. Also, a lot of confusion.  I don't understand what all of this means. After a lot of research I did understand congestive heart failure and now know a little about cardiomyopathy. I know there are basically 4 types and I don't know which he has. I want to know what this means for my dad straight up.  Can I expacet many more years with him, or should I be thinking about death?  Just how bad is this condition? I know that to be put on a heart transplant list there has to be 30% enjection fraction. I am just really worried and scared.  He is now taking all of his medication and will see to it that he has it. But what should I expect?  Please help me understand this and any additional infromation would be greatly appreciated.

[Momto3]

It is a serious condition, but it is often manageable.  

An ICD is an implantable cardiac defibrillator.  There is research that strongly supports ICDs for people with low EFs. I'm thinking your Dad's doctor is waiting to see how well medication alone works.  

Maybe you could ask your Dad if you can go to his next appointment just so you're sure you both understand how to best manage his condition.  Don't forget, many people do quite well with medication and lifestyle changes (diet, etc).  My Dad had bypass surgery (4 grafts) and his EF was in the low to mid 20's for years.  After his ICD implant (2007) his EF rose to 42%.  The doctor is conservative so he wants to reserve judgment until the 2nd followup echo. However, he feels there has been improvement!

[steph14]

I am very sorry to hear about your mother.  My prayers are with you also.  ICD?  I am very new to this and don't know what that means.  I do know that the DR. said that his heart was too weak for surgery. He also has panic attacks, which scare me.  They put stress on his heart. He has no diabetes.  The Dr didn't mention the transplant list.  I read about it on the internet, and it almost seems impossible and a very long shot. I don't know nothing about his other organs, nothing mentioned of them.  They just said that there was absolutelly no blockage in his heart, just reallly weak.  I don't know if he would  be ok with  me talking too his DR. alone because he would say what is there that i don't know about and worry him more.  Does a low heart rate go along with this?  His runs in the low 50's.

So, this does mean what I thought it would?  It is very bad?  

Thank you all for your help. Any other infromation would be great. Thanks again so very much.
Stephanie

[Momto3]

Did the doctor suggest your Dad be implanted with an ICD?  More and more, doctors are recommending that patients with EF below 35% be considered for an ICD. That is definitely a question for the doctor.  It is important that he take his medication, restrict his salt and liquid intake and follow the doctor's instructions.  Many people experience improvement so try not to worry.  You will need your Dad's permission to talk with his doctor.  Do you think he would be OK with that?  You may want to suggest to your Dad that you would like to find out more about his meds, and what he can do to improve his condition on his own.

[Encephalomalcia]

Here is a website with a lot of information:  http://www.****.***
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Cardiomyopathy is disease of the heart muscle.  The heart will eventually become so weak that it will not be able to pump blood to organs and rest of the body.  My mom had Cardiomyopathy due to radiation from breast cancer in the 1980 along with valve and artery blockage.  She had a very weak heart.  She had open heart surgery to replace the Mitral valve and repair the tricuspid valve. Her organs shut down after surgery and she survived 21 days.  Her ejection factor was 35%.  If she didn't have the surgery she would have survived only days because she was turning blue.  Blue lips, ears, nose, ankles, feet, hands.  If I would have known this, I would have tried to talk her out of surgery.  Her heart was too weak for surgery.

Make sure that he takes his medications correctly as the doctor prescribes and avoids salt as much as possible.  Does he has a pacemaker?  My mom had a pacemaker for 12 years.
Your dad is so young, he should be able to get on a heart transplant list.  Are all his organs in good condition?  Any diabetes?

Take care, spend a lot of time with your dad, and see if you can get him on the list. The ejection factor can drop very suddenly, so frequent echo's (at least every 3 months) will diagnosis if it drops.

Deb
  

[steph14]

Thank You,  I don't want to ask all of these questions in front of my dad.  These are things he may not want to know, and probably would worry him even more. The DR. already said pacemaker wouldn't help him right now, and he is too weak for surgery. I hope his heart does get stronger.  I just don't completely understand all of this yet, and the DR. did completely explain it.  I am paying his bills right now for him and he is signing up on disability, it will just take a little longer I guess.  Hope every thing goes good with your mom, and will be praying for you all.  Thanks again, and good luck to you both.  Stephanie

[dsmommy]

I don't have alot of answers for you but can sympathize.  I'm very confused about my moms condition as well (posted yesterday).  There seems to be alot of "unknowns" and you probably need to go w/ your dad to the Dr and ask lots of questions. Have a list and try to find out as much as possible...what medications work best, how long to try them before trying something new, is a pacemaker an option?, what is the prognosis?, etc...  I've read post on here where lots of people have a great ending and their hearts get stronger.  Lets hope thats the case for your dad but you all need to know exactly what your dealing with!  Also, if there is a finacial strain you should contact disability, health & human svc, local food bank, etc to get some help.  Good Luck.  

[steph14]

When i said should be left alone ...... I meant should not be left alone, someone should stay with him at all times.