Heart Failure Support Group
Heart failure is a condition that can result from any structural or functional cardiac disorder that impairs the ability of the heart to fill with or pump a sufficient amount of blood throughout the body. It is often undiagnosed due to a lack of a universally agreed definition and difficulties in diagnosis, particularly when the condition is considered "mild."
Hi everyone, I’ve joined because my Dad has heart failure and I just need to talk and get advise.
my dad is 62, Nov 2017 he fell poorly with a heart attack, this was caused by a blockage in his bowel which required major surgery. Against the odds he survived the operation and the heart attack, 6 days later he had a stroke. After 146 days in hospital he finally came home, last week he had tests done and 40% of his heart is no longer working.
This weekends he was admitted back into hospital because of fluid building up which they are getting under control and should be sending him home again this week.
Apparently his body has stopped producing B12 so it’s causing problems so they are injecting him with B12.
He also has diabetes which he has had for many years.
I don’t know what stage heart failure this is and I know little about this but I just need to be told straight, I want to know how long I’ll have my Dad before he passes away.
Its been a very difficult time as I am sure all of you can understand, doctors never give it to you straight because they can’t predict the future.
Ive read a year I’ve read 5 I just don’t know what to think, I want to have a big holiday take my mum and dad.
I am keeping it together on outside for my Mum and my partner as she is close to my dad but inside it’s killing me. My best friend passed away this year who lost his Dad so the one person I would have talked to has gone, I have friends and things but find it difficult to open up.
I sound ridiculous asking all this, I just needed somewhere to go and talk.
Any advice or opinions would help and I would prefer to be just told straight, I know nobody will know an exact time frame but I Just want some help understanding everything
Thanks for reading
Mark
When you said 40% of his heart is not working, I suspect you really meant he has a low Ejection Fraction of 40%...that ain't bad, frankly I'd kill for that. Yeah it's an indication of heart disease but not the end of the world. What it really means is his ventricles are not pumping out the volume of blood he needs to properly keep his body and organs going.
Now this can get confusing but I'll try to explain about ejection fractions. Okay, so a normal healthy heart only ejects 55% to 75% of the blood pumped in from the top of the heart (Atrium). That percentage varies by the individual but if you have an EF of 55% or higher they consider it normal. 40% is considered mild to moderate heart disease and many many people function perfectly normally with that EF. 30% is kind of the magical number where they consider it severe and usually will insert a defibrillator or CRT-D.
So you understand, my EF has been as low as 15% and hovers at 20%. I do in fact have a CRT-D and am paced in both ventricles 100%.
One of the side effects we suffer with a low EF is fluid build-up (Edema) in various locations. This is the most dangerous situation for us, but luckily somewhat easily managed through diet, water pills (diuretics) and daily monitoring of weight. You should check his weight every morning before eating and preferably after urinating. A weight gain of 3 pounds in one day or 5 pounds in a week are clear signals of fluid buildup. Talk to his Cardiologist about how to manage his diuretics (water pills AKA Lasix) to keep fluid build up under control.
Most commonly swelling shows in the feet and ankles but can happen in the abdomen hands and other locations. You can do the divot test at home which is to push on a spot where it looks swollen and watch how fast the dimple comes back to normal after releasing. If it's slow to go back that's a sign of fluid build up.
Lets go back to life expectancy. First and foremost let me say my heart is a train wreck. I've had numerous silent heart attacks and suffer Cardiomyopathy, coronary blocks and had a quadruple bypass, I had my mitral valve replaced and it' squeaking and smoking again, I enjoy quite a number of rhythm problems including the biggie Ventricular Fibrillation and wear a CRT-D. That's a defibrillator pacemaker on steroids, I have unstable Angina and well frankly I'm tired of typing but I think you get the idea, I have a broken heart. I was told 11.5 years ago unless I had a transplant then and there I wouldn't survive to leave the hospital...I declined when they refused to give me any trade-in allowance on my old heart. (True story). Here's my point, it's not to impress you, it's to illustrate those life expectancy predictions are pure BS. 11.5 years and I'm still here annoying my doctors. I do smile a lot, it confuses doctors.
Still whatever life we have left we need to make the most of. Nobody gets a guarantee. If he follows his treatment program, monitors his diet and exercises he can extend his life for a long time.
One last thought. My Mother-in-law was convinced she was dying, and enjoyed poor health. After 15 years of her screaming she was on her death bed, her prediction finally came true. What a wasted life. Remember, you really aren't living if all you do is worry about dying.
Good luck to you and your family. Don't give up, it can be overwhelming but once you understand how to combat this it can be a whole new journey.
What I meant to say when he had the heart attack it was classed as moderate after testing 40% of it isn’t working at all one of the smaller arteries isn’t functioning it’s died gone can’t be fixed. He was taken in because of fluid building on his lung and also his legs she feet ballooned and could not breath properly. Because he had a major stroke also he can’t walk and is now in a chair, he can stand and with help walk up a flight of stairs to toilet but needs help getting dressed etc. The blockage to his bowel that caused all this was so rare they said 1 in 10 million get it (I can’t remember the name of it)
The diabetes has worsened since the stroke, he’s lost around 6 stone in weight and is a shell of my Dad even his personality has changed he was a big strong man mountain with a fiery side but has now become so weak in such a short space of time.
I guess I was asking the question how long because I want to know in my own head so I have some peace of mind.
I was reading that there are 4 stages of heart failure one called congestive which is the fluid build up and it says that’s level 3.
I must sound so stupid but doctors won’t tell you anything only that he now has to take 34 tablets a day and that the coughing is the fluid build up. Give him this card it has green amber snd red and when his symptoms hit red to dial 999.
My mother is a nurse of 35 years so she is used to seeing this sort of thing but even she isn’t doing her usually positive talk
I feel like everyone knows something I don’t like i am been told bits when all I want is to be told straight.
I think I’m just frustrated and angry and upset all in one.
Thank you so much for your reply
Your Dad's still alive, make the lost of your time together, it'll pass quickly