My dad is 87 and has CHF, dementia and Neurapthy. He was just in the hospital to have fluid drain off of his body. Prior to this, he had an extremely bad cough and was coughing up stuff (normally white looking phlem). We got him home yesterday and already his legs are starting to swell back up with fluid. He refuses to take lasix or any other water pill. Right now, his coughing is better but I know it will get worse again. What things do I need to pay attention to when his legs get extremly swollen again and the coughing gets bad again?

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I'm afraid it's the Lasix, or Hospice route. My mom refused lasix . . and death ensued. When I told the ER doctor that she wouldn't take lasix, I requested that Hospice be a consideration. They agreed. My mom agreed to Hospice because it was 'free' (medicare paid). Lasix was somewhere upwards 1K a month - she couldn't stand spending that much money on a pill.

Since I had NO LEGAL control of making her take the meds - well, her end was nearer then she wanted I'm sure. Hospice was the course. With Hospice, at least the oxygen tanks will be supplied, along with comfort meds. 87 is not young.

You need to find a way to the Hospice route. And that may be another ER visit to get there. Also, once (CHF ) the heart is operating at less then 30% . . .that's it. There's no improvement from my understanding.

Find a way to get Hospice soon.
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Reply to Blue24

My dad has a similar diagnosis, with severe kidney disease. So he can not take water pills everyday.

What his doctors have prescribed and it has been successful in keeping the water out of his tissue.

Weight every morning in the buff, if he has gained 3 pounds overnight he gets 20mg lasix. Usually 2 days in a row takes the water off.

He uses a machine called Body Rubs Foot Massager 4 times everyday for 10 to 20 minutes. This helps with the circulation and helps with his neuropathy pain.

He has had improvements in his health and has not had any hospitalizations from excess water since we implemented this routine.

He hates the water pills, he says all he does is spend the day in the bathroom. Which is true. His doctors said that taking them at night cause no sleep and that is worse for his overall wellbeing and not to do it. That has made it easier to get his compliance.

Best of luck, this is a scary disease and heartbreaking to watch. If he absolutely refuses then please get hospice involved, he will go down hill and need the help.

Great big warm hug! Such a tough situation.
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Reply to Isthisrealyreal

I'm very sorry for your situation. My father also just passed of CHF. Like your father, he had it on both sides and even with diuretics, his legs would swell so bad they would seep. They gave me a "super water pill" (metratolozone) sp? to give him, when it got out of control. He was also on bumex twice a day. I cannot fathom, your dad refusing to take it. That is a death sentence and a miserable one at that. My dad was in and out of the hospital for ivs the last two years. He decided on hospice,but think he regretted it afterward. He felt as everyone gave up on him. Since he refused to watch his salt intake, it was a battle, no one could win. He passed away in his sleep, three months into hospice. Thankfully, it was a very peaceful death. He was actually working on his lawnmower the day before. I can tell you compression socks did help with the swelling, and elevating. But without the lasix, he will not be able to keep up with it. I think he needs to make a decision. Hospice or the lasix. Once again, I am very sorry you are going thru this. I hope you both find peace, no matter what his decision is.
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Reply to Playadelcarmen2

I am going to be direct here. If your Dad won't take the water pills he will drown in his own fluid. As said, call in Hospice. They will keep him comfortable.
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Reply to JoAnn29

That your father will not take his diuretics to get the excess fluid off will DEFINITELY land him in the hospital SOONER rather than later.
For now, Kdar, start by educating yourself a bit on google or another search engine. Type in "Congestive Heart Failure" and look at symptoms and actions.
Basically CHF is easy to think of as a weakening heart, a failing pump if that makes it easier. If the heart is weakest on the right side them the extremities and the abdomen may swell with fluid. If the heart is weakest on the left side it is more DANGEROUS in that the fluid will accumulate in the lung, and the patient can die quickly. Literally drown with the fluid filling the lung, a cough, inability to lay down flat and still breathe. Flash pulmonary edema can kill in minutes. This is an EMERGENCY situation. Your father has both left and right heart failure if he is unable to breathe and his extremities are swelling. He could die of this. There is no time to spare when the breathing becomes labored. Call 911 at once.
It needs to be made clear to your father that failure to take the diuretics to get rid of this excess fluid will almost certainly lead to his death. The medications will not CURE his weak pump. There is nothing that will do that but a heart transplant. It is time for your Dad to decide if he wants no treatment, hospice, and to pass at home, or if he wants treatment in order to manage his weak heart pump for some more time.
I wish you so much luck. I am certain this is very frightening. Please, when next in hospital, and you will be, ask for all the education you can get on CHF. They will have reading material for you. And do use the internet. I hope you will update us. I am so sorry for all you are going through, and wish your Dad well.
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Reply to AlvaDeer

That fliud will build up in his lungs when he goes to bed so the cough will return. If he is of sound mind and refusing his meds, sit down with him. Ask him what he expects will happen. Ask him if he wants a hospice evaluation. He will suffer from acute shortness of breath as it gets worse and the hospital revolving door will happen.
Dementia adds another problem so you may need to step in and assist him to get follow up doctor care. Or you can wait for the next soon to be hospital admission. This will be a good opportunity to request a social worker and family planning meeting.
My aunt at age 97 chose not to take meds. Our conversation was that she was aware what she was doing. I had to arrange for 24 hour caregivers and we were armed with meds that would make her comfortable. She only lasted 4 or 5 days.
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Reply to MACinCT

My dad had CHF for a number of years, and end stage for at least the last two. I can’t see how anyone can deal with the fluid buildup and shortness of breath without the help of Lasix. My dad took it in slowly increasing doses to bring him relief. He also had the blessing of his cardiologist to take an extra one when things got really bad. Lasix is hard on kidneys, but the only relief he had in a home setting. In a hospital, to remove fluid it’s IV Lasix, very different, much faster acting and harder to regulate. Without meds in home, all I see is deciding when it seems bad enough to go back to the hospital to be drained by IV Lasix again. My dad did this merry go round the last few years, grew increasingly tired of it, decided on his own to stop, and came on on hospice care. He passed away a few months ago. CHF is long and cruel. My dad didn’t have dementia. Can yours make good decisions about his care?
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Reply to Daughterof1930
Kdar1969 Oct 11, 2020
I am his only child and already have POA and Advance Directive but he can still make decisions about what he wants. He doesn't want anything that will prolong his life but it is so hard to see him refuse things that could make him more comfortable.
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