cardiomyopathy, copd and emphysema

[tiff362]

Hello
My name is Tiffany.  I am writing this post about my father.  He is now 51 years old.  He was diagnosed with cardiomyopathy (he won't tell me much more) when he was probably around 46 or so.  I guess when he was first diagnosed, his heart was only working at 20%?   He is on all types of meds now.  He also has super high cholesterol (500's) and high blood pressure.  My father has smoked 3 packs of cigarettes a day from about the age of 16 to when he was diagnosed.  He has now cut down by a lot, but still does smoke regularly.  He supposedly can't get a heart transplant because he still smokes.  He has recently been diagnosed with COPD with full blown bronchitis and has had emphysema (sorry if that is not spelled right) for a long time now.  My father is a stubborn person and we were never that close.  He has recently been calling a lot more, and this illness has totally changed him.  My problem is, I want to know more and he won't tell me.  He, I believe, is in this frame of mind that if he doesn't talk about it, it isn't happening.  I have seen him lately a few times and he can barely walk without breathing very heavily.  His abdomen looks like he is about 9 months pregnant (he always had a beer belly but never this much).  His hands and face are very swollen and his legs are tiny as always.  Anyways, I have a feeling that there is not much time left for him, unfortunately.  He also can't get treatment supposedly for his COPD because he still smokes.  I know he still smokes, still eats unhealthy food, and still drinks alcohol sometimes....what can I say, he is a stubborn man, always was and always will be unfortunately.  He has tried to quit smoking but he gets horribly miserable and goes through  nasty withdrawl so he has told me that "..if I'm going to die, I'd rather die a happy man, not a miserable one"  Keep in mind, all of this information is through my father and his wife....I want to  know more though.  He said he had an echo done in January of this year and his heart was at 40%.....which I think it had gone up to 80% when he first began his meds, but now its worse since he has the copd???  I don't know too much about any of this, but I am not like my father, I want to ask questions and  know what's going on.  If anyone can give me more information or details about his prognosis that would be great!  Don't feel bad if its not good news you want to tell me.  I am very strong and, as I said, it is very sad to me because we are now just becoming close, but its not like we have been close my entire life.  THere is no "special bond" between us, but I would like to know possibly how much time I have left with him.  His second grandchild (from me) is on the way and I know he really wants to see him grow up.  Any info. would be greatly appreciated!  Thanks
Tiffany

[gmachris518]

I would like to shed a little light on the reason for people being vague about their illness.  

From the very beginning, when someone is first diagnosed, regardless of whether the patient quits smoking, quits drinking, or follows the strict diet guidelines, etc., the doctor puts the blame on their shoulders for what is happening to them at that point in their life.  It's doesn't matter if a person has never smoked or drank, it's STILL their fault and nobody wants to be reminded who's fault it is, everytime they talk to anyone.  So they keep it to themselves, and the less anyone knows, the less they will brow beat the person.

I am stage 4 heart failure, which I am convinced was caused by a virus, which was contracted at the ER in the local hospital, where I had taken my husband because he collasped(which was caused by medication the doctor had him taking).  Anyway, pre-virus, I had had a stress test that came back 100% normal, with absolutely no blockages.  Then I caught the virus and my heart enlarged, and got weak, and I went into heart failure.....none, of which, I consider to be my fault.  However, when I was diagnosed with heart failure the doctor said it was MY fault, not the virus, that caused the problem.  In any event, they did a heart cath on me, and found that I had no blockages still, but, it's still my fault.  

Then, I had a heart attack in November.  When I told my daughter, I made it abundantly clear that it was a small vein heart attack, and wasn't a dangerous situation.  However, she attacked me, telling me it was MY fault, blah, blah, blah.  So, now, I don't discuss my medical stuff with anyone, outside of this board, and my doctor....since he just won't shut up about it. :)

I need a heart, and kidney to survive, and I won't get either one because I need both, but I don't want to spend the rest of my life explaining my actions to everyone around me, so I just don't share.  A person who is ill gets to the point that they feel like every single action they make is scrutinized by the people around them, and they, just want to be allowed to live what is left of their life.

As far as knowing how long you have with your Dad.  Only God knows the answer to that question.

I hope the best for you......

[jlh0118]

Knowing how long you may have with your dad will be a very hard guess.  I just lost my dad a week and a half ago.  He awas in late stage copd and accidentally pulled his tube out of his oxygen machine while in the bathroom.  Since he got so exhausted by barely moving he sat there for what seemed like hours I am sure to wait for someone to find him.  My mother did but because of the lack of oxygen he suffered and was on a vent for 3 weeks then his heart just gave.  This has been the most difficult thing for us because I was close, I was daddys little girl.  My advise is to spend as much time with your father as possible.  My father was the same stubborn and quiet about his disease for the most part.  He also smoked.  Take it one day at a time but don't leave him alone and don't take a day for granted.  Jacki H NC

[HealthyInk]

Hi Tiffany,

I used to work with seniors with COPD. What I know about it is that it can't be cured. You can keep it from getting worse, but you can't reverse it. Your dad sounds just like a typical COPD patient with the barrel chest and not being able to get very far without being out of breath.

There are exercises he can do to improve his breathing and his function. He needs to learn pursed-lip breathing for starters. He can also do seated exercises with light hand weights to improve his functioning as well.

Is he monitoring his heart failure symptoms like swelling and weight gain? He should be weighing himself to check for sudden fluid weight gain. His doctor probably mentioned needing to keep his salt and fluid intake controlled as well. Avoiding frozen meals and convenience foods will help greatly. Those can have more than a day's worth of salt in one serving.

Heart failure patients have to control salt because eating too much makes the body hold too much fluid which overloads the heart that is already weakened.

Sorry he's having trouble with quitting smoking. Unfortunately, nicotine is on the top of the list of the most addictive substances there are. Many heart patients and COPD patients continue to smoke, even until death. Maybe you could help him with his diet and exercise to control his symptoms and improve his quality of life and functioning.

Good luck with your dad