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SheilaJ
Reply with quote  #1 
Would anyone here be willing to share their experience with congestive heart failure? I've researched a great deal on the internet. It appears that the congestion can come and go, although the underlying disease is always there. But the prognosis is really hard to pin down, as far as how much time the patient has left. I guess I'd like to know how you can tell when it's getting really bad, if you even can.

MIL was diagnosed several years ago with CHF. About 2 years ago, she was hospitalized with pneumonia (I suspect her refusal to use A/C and the heat stress and dehydration that went with that played a part in her pneumonia, although that's just my speculation). She got a staph infection in the hospital. After she was discharged, it was obvious that she was weaker, and she had that "shuffle walk" starting. After some recovery, she got a pacemaker. Physically she improved a little, but she still seemed tired a lot more. Doctor told her sternly, no drinking. She used to have a drink or two each evening, supposedly no more. We think she continued to drink anyway, at least sometimes. She also smokes. I think he also told her a low-salt diet ,but she ignores that.

Then in March 2008, she was hospitalized again. Congestive heart failure was really bad. She was in the hospital for nearly 3 weeks, had temporary dementia and a UTI. This time she was discharged to assisted living.

She is noticeably weaker now, and is mentally not as sharp as she used to be. Her walking is much slower, she tires more easily, she falls sometimes but amazingly nothing serious so far (won't use a walker or cane). She's eating better but letting her showering and hairwashing slide. Cardiologist says she's doing pretty well but must not drink. We're not sure if she's sneaking drinks or not. She is 84 years old now.

So there you have it. Any clue on the prognosis? I'm guessing she could have years left, or months, or a decade, no way to be sure? Any signs I can watch for to know if she's really fading fast? Are we likely to need to look for an NH soon?

The uncertainty is so hard. And so is the fact that she won't take better care of herself.




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SheilaJ
Reply with quote  #2 

P.S. - She seems a little weaker every few weeks when we see her. And this week she has a sinus infection and probably bronchitis and she fell again, pushing in a dining room chair (in the morning, presumably no drinking had been going on!)

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Mandy
Reply with quote  #3 

My mom has CHF and has had it for over 8 years now. She has fallen so many times over the years but doctors weren't sure if it was from the CHF. She is 83 and VERY weak. If she could still walk I know she would not be able to walk from her bed to a chair. She had a stroke during surgery 2 years ago and can no longer walk. My mom still has 1 drink a night and her cardiologist said that was fine. Mom does watch her salt intake and of course her liquid intake. She is on Coreg CR which is a good drug and it has helped but if she could move it would help more. She is also on Lasix to keep the fluid around her heart down. Mom had a pacemaker/ defibrillator put in about 5 years ago. She has had no episodes but her battery is running low in the defibrillator and won't probably last much longer. We are now having to decide if mom should get a new battery put in. Has your MIL had an Echo done lately? It will be able to tell you what her Ejection Fraction is. My mom's is 20% when it should be around 70%. Mom is having a hard time trying to talk to anyone because she gets so tired and out of breathe. Her mind isn't working well either but once again not sure how much the stroke played a part in that plus her CHF. Mom was in the hospital 4 weeks ago because of a blood clot in her lung and she got a lot worse. Wasn't sure if she was going to make it. But got her home and it took the last 4 weeks to get her back to sitting in a chair for 4 hours at a time. She will now tell me that she is very weak and tired. Even the little things that she could do for her self she can't anymore because she gets too tired. Like taking off her blouse she is now too winded to do it. Her caregiver does it now. It's sad to see them go through this.

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Millie
Reply with quote  #4 
SheilaJ

I only know my experience with my mother who was diagnosed with CHF quite a few years ago. She is 93--and still going. For years we insisted she take her meds religiously, thinking she needed them. Over a year ago, now, she was taken off everything but the diuretic.
 How can you tell when they're really ill from it? I don't think you can. Mother has had several episodes which medical professionals told me were likely to prove fatal. They don't know either. And yes, the uncertainty is very frustrating. I think that's why my BP has shot up sky-high. Get used to it--I'm finding out that that's life with the old folks. She will probably still be around when I'm officially an old folk and then go on to outlive me. So--don't worry. There's no sense in it, anyway.
Millie
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Barbara
Reply with quote  #5 
Hi Sheila,

My mom who is 91 has had CHF for as many years as I can remember and is still going.  She, too, has a pacemaker for atrial fribillation.  She has episodes where she can't function, like now.  We've had to hire caregivers to come to her ALF room 24/7 - she can get up and down but can no longer go down to the dining room to eat her meals -- thus, the caregivers.  Expensive!!  But I cannot be there all the time.  She has has been diagnosed with GERD, after three trips to the hospital this month, thinking it was her heart.  Actually, her cardiologist says she has the yeart of 40 yr old.  Okay, that's a better heart than I have.  Surely she will outlive me and everyone else. 
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Cat Lady
Reply with quote  #6 

This is a hard one.  Both of my parents died from CHF.  My dad had it later in his life (about a year before he died) and after 3 months of doctors, hospitals, etc. he said enough.  He went on the Hospice program and died 6 months later.  The last 2 months he was pretty much bed ridden.  Mother, on the other hand, had CHF for many, many years and it was pretty much kept under control with diet and meds.  The last year of her life the CHF didn't respond well to much of any thing.  Four months before she died she had a cough that didn't respond to anything and only happened at night.  That was the first indication the CHF was getting worse. Again - like Dad - she went into the Hospice program and was bed ridden the last month before she died (she was only in Hospice 2 1/2 months).  Both had a hard time breathing - oxygen helped a little - morphine helped more.

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billie jo
Reply with quote  #7 

sheilaj, my fil has had chf for years. he is on lasix and has had to have the dose adjusted when he starts getting shortness of breath and tires very easily. these are his signs that he is retaining extra fluids around his heart. for the most part this is what it takes to regulate it. he also has a pacemaker but that was for a different heart problem. through the years we have seen his decline, mostly slowing down from the overactive life he was used to living. each time he comes out of the hospita he is a little weaker and doesn't bounce all the way back, but for the most part, by taking his meds, watching his diet and taking things slower, he is doing pretty good. he also a shot of whiskey everynight, without fail, and an occasional beer. his shots can be anything from a shot glass to the bottom of a tumbler! but to him it is just a little shot. and the doc hasn't a problem with that as long as he does the other required things. doc also says that a glass or two of wine a day is ok, not on top of the whiskey, though. there is no telling how long a person with chf will live or what the decline rate is. it is different in everyone. i'm sorry i don't have an answer for you. hugs to you [and peace.]

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2nd kathy
Reply with quote  #8 
dad has been on hospice for 6 months. The hospice doctor says he is in 'end stage' heart failure. He is incontinent, is most often confused, has so much fluid weight on him that his legs look like tree trunks and he is taking 160 mg lasix daily plus zarolxolyn 3 times a week to boost that. Still he goes up or down only 3 or 4 pounds (its not working to keep fluid off). he can hardly walk with the walker. My daughter who is an RN working with such patients says they can keep declining, become bedridden etc or just have a massive heart attack and die. She has talked to such patients just fine and 30 minutes later they are dead. There is just no telling. Online I saw that heart failure patients can continue this merry go round of good one day, very bad the next and this is the way it seems with my dad. He thinks he's dying that day, I think he is and the next morning it "I feel pretty good today. Thought I was gonna die last night though!") It is frustrating especially as they lose other functions and often are confused and no longer make sense until the next day when they seem quite lucid. I changed my dad's pant 3 times yesterday, my husband did it once. Even with a sleeping pill he was up twice during the night going into the bathroom and this morning I have diarrhea throughout his room, the hall and bathroom. (Of course he won;t wear depends but I don;t know if that would make it any better). Dad is now on 5 liters oxygen 24/7. Often sits and twists the cord 'fixing it'. Told RN daughter he is 'waiting'. Hospice thought he had 6 months last December 6th and here he still is. It is sad, hard, frustrating, irritating, depressing, stressful and 100 other adjectives and I also think it would be easier to know how long they (and we) will have to continue on but like it says online "the illness trajectory is highly variable despite treatment with periods of exacerbation and periods of remission." Though they do say that each  incidence or episode results in a decrease in functional status. This I have truly seen and can be a rapid decline.I often think my dad just needs to let go, make up his mind that this is it. He too takes coreg though now they have cut the dose in half. I feel like he needs to just quit all these meds that keep the olds rusted pump from struggling on another day, another hour. It is cruel at this point but then that's his decision and I don't think he's lucid long enough or enough period to make or understand that he has the right to make that decision. Bless you, I hope you continue to find the strength to get through it.
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Unregistered
Reply with quote  #9 
You die from CHF. No cure.. it is a hidden disease. a broad term disease. In the end it is is on the death certificate. There is no cure only endless trips to the ER with more lasix.  Eventually it affects the kidneys,both fail..and oxygen is forced into your lungs . We need more funding for CHF
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Unregistered
Reply with quote  #10 
Just found this thread, my Mum was diagnosed with heart failure 5 years ago (age 56), was being kept at bay with pills etc but she was forever getting chest infections. She went to the doctors on the Thursday saying she felt tired, weak and short of breath (sure signs her heart isn't working as it should) - they told her she had another chest infection - she died the following Monday age 61. This was last year and had the doctors actually put her in hospital she may still be here - post mortem - Acute Conjestive Heart Failure. Just make sure you get a second opinion - wish now I did that for her 😢
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Unregistered
Reply with quote  #11 
Quote:
Originally Posted by SheilaJ
Would anyone here be willing to share their experience with congestive heart failure? I've researched a great deal on the internet. It appears that the congestion can come and go, although the underlying disease is always there. But the prognosis is really hard to pin down, as far as how much time the patient has left. I guess I'd like to know how you can tell when it's getting really bad, if you even can.

MIL was diagnosed several years ago with CHF. About 2 years ago, she was hospitalized with pneumonia (I suspect her refusal to use A/C and the heat stress and dehydration that went with that played a part in her pneumonia, although that's just my speculation). She got a staph infection in the hospital. After she was discharged, it was obvious that she was weaker, and she had that "shuffle walk" starting. After some recovery, she got a pacemaker. Physically she improved a little, but she still seemed tired a lot more. Doctor told her sternly, no drinking. She used to have a drink or two each evening, supposedly no more. We think she continued to drink anyway, at least sometimes. She also smokes. I think he also told her a low-salt diet ,but she ignores that.

Then in March 2008, she was hospitalized again. Congestive heart failure was really bad. She was in the hospital for nearly 3 weeks, had temporary dementia and a UTI. This time she was discharged to assisted living.

She is noticeably weaker now, and is mentally not as sharp as she used to be. Her walking is much slower, she tires more easily, she falls sometimes but amazingly nothing serious so far (won't use a walker or cane). She's eating better but letting her showering and hairwashing slide. Cardiologist says she's doing pretty well but must not drink. We're not sure if she's sneaking drinks or not. She is 84 years old now.

So there you have it. Any clue on the prognosis? I'm guessing she could have years left, or months, or a decade, no way to be sure? Any signs I can watch for to know if she's really fading fast? Are we likely to need to look for an NH soon?

The uncertainty is so hard. And so is the fact that she won't take better care of herself.




0
Lori Dechant
Reply with quote  #12 
CHF is hard to predict. My father lived exactly 5 years to his diagnosis. In the end they will slow down on eating, they will have hallucinations, and not sleep good. My dad this for about 5 months before he passed. The doctors could not believe he lived those 5 years he had 2 severely torn heart valves, and advanced copd. He was 88 when he passed. My dad hung on for so long. The day he passed away his brother died 3 hours before him. He was waiting for something. Someone could live years, months, or days with this disease. No one knows when the heart will give up. I took care of my dad for 4 years of this sickness, but I made sure he watched his salt. Watching the salt is so important. My heart goes out to all of you watching your loved ones live with this. It can be a steady decline or a slow decline.
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