Does anyone have a loved one that has congestive heart failure?

My husband had CHF for more than 20 years. For the last few years he had a scale in our bedroom hooked up to the phone line so a nurse could monitor his weight daily. Occasionally she'd call me.
Nurse: Coy's weight is up 3 pounds today.
Me: That was probably the pickle he ate at a restaurant yesterday. Does he need to adjust his diuretic today?
Nurse: Coy should absolutely not be eating pickles! Weren't you told to avoid salt? Don't you know how salty pickles are?
Me: Ma'am, Coy has a terminal condition. He is most likely going to die from dementia. In the meanwhile, I am not going to deprive him of a pickle once in a while, or other of his favorite foods. He has followed a heart-healthy diet for more than 30 years, and kept his salt intake low. Now he is eating for pleasure. If we should make adjustments to his pills, I'll gladly do that.

And we continued on that way. His death certificate says he died of "Lewy Body Dementia" and the autopsy said it was amazing he hadn't died of atherrosclerosis, and that he certainly would have shortly. So CHF apparently wasn't one of the causes of death.

Littlemisskitty, each case is different. How much the patient is willing to be resticted is also different with each case.

If I make it to 87 and then am diagnosed with CHF, I will take the water pill, watch my salt intake (I use very little now, so that won't be a huge change), and ignore all the other parts of the treatment plan. Nobody lives for ever, and the older I get the more important enjoying life is to me. Food is a huge part of that. I an NOT advising anyone else to have this attitude. I'm just saying that the elderly should be listened to as they express what is important to them.

Hi my 87 yr old mom was diagnosed in February & I thought it was the end. After reading everything I could including these forums I realized there's no predicting life. I've moved in with her because with dementia she can't restrict her own liquid or diet, she won't/can't weigh herself daily. I'm preparing for a long haul hoping what she has left can be enjoyed but also preparing (can you really?) for the inevitable end. Hardest part right now is the 48oz of water she's allowed. She wants 4 cups of decaf a day minimum. It's a struggle, good luck

It's different for everybody. I was diagnosed with CHF approximately 10 years ago. I'm over 60 and walk 2 to 4 miles per day. It's warming up so I will be switching to the bicycle and I usually peddle 5 to 8 miles depending on how I feel during my ride. I wear compression socks, and if the edema gets bad, I'll lay down and it reduces pretty fast.

As mentioned above, everyone is different. Many people have various other medical issues as well as CHF, so that affects their situation as well.

My mom was diagnosed with CHF and Stage 4 renal failure at the same time, so her situation was precarious. The fluid buildup from the CHF required treatment with Lasix, which is very, very hard on the kidneys - which were already in Stage 4 failure - so it was a delicate balancing act for the last year of her life. The fluid would build up, and she would be put on Lasix for a day or so to bring it down, then they'd let the kidneys rest until the fluid built back up. She was headed for dialysis in a matter of months with this situation, but she passed away before that happened. I'm not saying the CHF took her life - she had multiple co-morbidities (things that could in and of themselves cause her death) - so the CHF was just a contributing factor.

As mentioned above in other situations, Mom was wanting to do what she wanted to do - she didn't want to keep her feet up, so she was constantly dealing with the edema in her legs. She wanted to eat salty, sugary foods like she used to, and would find a way to get it, even in the nursing home - which affected her health as well. (She was sneaky - she'd figure out who was the newest staff member on the night shift that might not know her dietary restrictions and ask for potato chips and such from the kitchen snack tray - and she'd get them every time.)

People with CHF can live for years, depending on the severity of their case, other mitigating factors and medical issues, and how well they follow their doctor's or caregiver's orders, as mentioned above. There's just too many factors involved for anyone to say how well your grandmother will do.

I'm "ditto-ing" 97yroldmom's much more through explaining of the use of Lasix and the subsequent adjusting based on fluid retention. My dad did weigh himself everyday and a couple extra pounds meant a couple extra Lasix for a few days. I will say the Lasix was a sore spot with my dad in the beginning because it's desired effect - urinating, a lot - curtailed his active lifestyle. So dad would get creative with his Lasix and got himself in trouble on more than one occasion.

With the diet - what 97yrold mom described is what my father was suspose to be doing - but my mother was the big problem here. Mom felt dad should have been able to eat what he wanted and even would drive him to McDonald's for his favorite treat - French fries! Problem with that would be that for days afterwards my father would be down and out - struggling for every breath. It drive me out of my mind! And after my dad had a paid full-time caregiver, his diet was a constant source of contention between the caregiver and my mom - with me siding with the caregiver- which just P.O.'d my mom to no end and like a child, she would act out - giving my dad things he should eat, with no thought or care to the consequences that he suffered. I guess she showed us, right? Of course my dad should have be behaving as an adult as well and not eating the crap - but... Anyhoo, so yes - it's critical that everyone's on board with the no salt thing and is very supportive of it.

Everyone's experience is not the same. This was mine. My mom had CHF for 6 years that we knew of. She recorded her weight right after peeing every morning. If it was up 2 lbs in one day she was to call her dr. Up 5 lbs over 3 days. Call the dr. Then her Lasix (diuretic) would be adjusted for a few days until the excess weight was off. It's important to know the " dry" weight. That's the weight without excess fluid onboard. The second item is absolutely no added salt. No processed foods, cheese, bacon, canned foods, fast foods or restaurant foods. Since she was also on a blood thinner she wouldn't eat anything green ( vit k) so this meant she had an extremely limited diet from which she seldom deviated. The third item is exercise. She had an ongoing therapist who came twice a week. She would see her cardiologist about once a year unless she had an event. She had an excellent cardiologist. We drove 3 hours one way to see him. Always be on guard for failure should she fall, get a cold, a UTI or other issue. A trip to an ER and a shot can remove excess faster but it's harder on her kidneys. It's best to not let the fluid build up. I also would recommend home health if your dr will order. They can also provide an aid to help with her baths. She will have someone taking her vitals multiple times a week this way. They can draw blood for routine or emergency testing. They can collect urine samples. Also get a oximeter. This inexpensive device can lessen your moms anxiety when she thinks she can't breathe. After a fall, a hospital stay, rehab etc she was prescribed a hospital bed. Medicare paid for. Sleeping with the head and chest elevated makes it easier to breathe. Also getting up and down several times during the night was easier with the bars on the bed to hold onto. She used a bedside commode during the night. About the fluids. My mother tried to drink four 10oz glasses of water per day. She probably only drank two to three most days. She was only restricted on water one or two times towards the end. She kept her water lined up on her kitchen cabinet with a straw. When she walked by on her way to and from the restroom she would take sips. (When it is restricted know that all liquid is counted even in soup). In her last couple of years of life when her Lasix required more adjustment, her care was managed by a heart transplant clinic at a major medical center. She was referred to them by her cardiologist to allow for more timely feedback. We still only went in once a year. Of course, not everyone is the same. She wouldn't rest in her bed during the day. Wouldn't put her feet up to reduce the swelling when it appeared. Did not wear the stockings. Believed in diet and exercise. Some would suggest to her to have the bedside commode near her chair to save trips to the bathroom. She rejected that because she knew she had to keep moving. Her guilty pleasure was a hamburger with mustard and sliced tomato and a root beer. Also be careful that you keep up with the dry weight. You might think it's 140 and you don't realize she has lost weight and you aren't realizing she has 6 or 7 lbs of fluid on board. So pay attention to signs of weight loss that don't show up on the scale but do in the face and shoulders. Make a habit when you visit to always check her weight log to see that she is still recording and that the weight isn't inching up. Make sure her friends and family don't undermine or sabotage her diet. Salt is her enemy.

My father had CHF and while I can't recall how many - he did live a number of years with the condition. My father controlled the symptoms with diet and medication. In my fathers last few years fluid building up in the lungs was the primary concern with his CHF. Occasionally he would need to go to the ER to have the fluid drained. Other than that he took Lasix - a diuretic - and was on a low sodium diet.

Everyone is so different. I was reading about CHF when the doctor told my dad he had this condition on a Wednesday and by Friday he had passed. One alarming statistic had 50% of patients passing in 3 days of being told they have CHF, while some can make it anywhere from 5 years to 10 years. Its not an easy road.

Many people are diagnosed with congestive heart failure and can go on and live for many years. It is just a matter of getting the correct treatment and following Dr's orders.
Having said that it does not mean that at 87 your Grandma has many years ahead of her as she has other things wrong with her.
Pneumonia is common among the elderly especially in hospital setting where they are not moving around enough or doing their breathing exercises.
As long as she continues to improve and is making an effort she probably has some time ahead of her. She is getting all the right treatment medically so encourage a healthy diet and moveing around but let her rest when tired or gets short of breath. Go easy on the fluids though so she does not retain more fluid.