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My 94 yr old mother is on hospice for over a year for end stage congestive heart failure. During this time, she has been on 40 mgs of lasix and 20 mgs of metazolone daily. The metazolone is only on Mon Wed and Fri. For the past year, when her blood pressure starts to plummet, the nurses will take her off the water pills slowly and slowly her b/p will come up to near normal. Right now, her b/p is 80/56. So I except she will come off the water pills soon. But then she fills up with edema. It takes a few weeks for this to happen, and then they will put her on water pills again. This has happened at least four times within the last year. She is also at the end of her battery life in her pacemaker. She does not want to get a new one. But the ups and downs of the b/p is taking a toll. How long will this continue? I hate to see her fill with fluid again. It is so debilitating.

My mother ground up my dad's cholesterol meds when he was in Hospice. They tasted beyond nasty. I finally got her to stop--for the love of Pete, what did she think they were doing? Giving him one more pain filled day of living?

W/O replacing the battery on the PM. she will not last long. An elderly woman I knew kept on top of that UNTIL she was in end stage heart failure--and she refused to replace the battery. She was done. Died quietly a couple of days after the battery was totally discharged.

At some point, you need to ask yourself exactly WHAT you want for mom, and what she wants for herself. Living for the sake of being alive--with no QOL is a very personal thing.

Keeping her comfortable with the water pills is one thing. Replacing a pacemaker battery to buy a few more months is another.
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Reply to Midkid58
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My husband is in a similar situation. He's been on lasix 80 mg. for almost the whole time that he's been under Hospice care, which is 18 months. At first, because he was retaining so much fluid, they had him taking the 80 mg. lasix twice a day. Then because his blood pressure was running very low, they had him drop to just 1 80 mg. per day. When his blood pressure continued to drop, they had me give his lasix every other day, but then his fluid just fills right back up, so I am back to giving it to him every day. It's kind of a damned if you do and damned if you don't. Do I want my husband to die from drowning in his fluid or because his heart has given out? It's really a no win situation. As long as he is comfortable, that is all I care about.

Sounds like you're in a similar situation with your mom. At this point I would just honor her wishes about the pace maker(does it really make sense at this point anyway?) and make sure that she is as comfortable as possible. Best wishes in the days ahead.
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Reply to funkygrandma59
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This is what we nurses used to call between the devil and the deep blue sea. There is really no answer. She needs the meds because her heart is not a strong enough pump to pump out her fluids. But this in turn lowers the pressure. And not, there really is no answer. Congestive heart failure is literally a pump that isn't working. When it is left heart failure it is more critical as that is fluid in lungs. If right heart failure it is peripheral edema. Many people end with BOTH. You cannot fix the heart pump and the meds meant to help have side effects you are currently seeing. It is time to consider hospice care now.
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Reply to AlvaDeer
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It is extremely debilitating, simply because with so much superfluous water in all of her systems there is less oxygen to fuel every function of her body. It is horrible to think about.

But I'm not sure, as I remember it, that it is quite so horrible for the person who is experiencing it. The main symptom - is this so with your mother? - is extreme fatigue.

If in spite of everything you can ensure that she is not frightened, not in pain, and as far as possible not depressed and frustrated by her lack of energy, you will be doing well. Assuming that neither you nor your mother like the idea of rousting out a couple of cardiologists, banging their heads together, and hoping they'll come up with better, smoother, more orderly management of her diuretics, I should try to focus on how she is feeling in the here-and-now. As long as she's okay, then you must try to be okay.

I should also try not to worry about her pacemaker's battery - they don't just conk out, all of a sudden, even when you're long past the "change by" date. What is the pacemaker actually doing for her? Does it have a defibrillator built-in?
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nymima Jul 4, 2020
No defibrillator in her pm. The pm was keeping her heart from going below 60 beats a minute. Her heart was going down to 35 bpm and she kept passing out. So 10 yrs ago in January 2010, she had a pm put in. The nurses tell me tat her heart sounds weaker. So I’m not sure if that is because the pm is getting low or if it’s her heart. If she was to get a new pm, then she would come off hospice. They consider that treatment.

Hospice was so good before the virus outbreak. Now we only get one nurse a week and her cna once a week. But if we needed them more, they would come. I help her manage, but I have to be careful as I am treating for cancer. I have non Hodgkin’s lymphoma. Mom doesn’t know it though. I tell her I’m treating for 2 auto-immune diseases and she believes me. I actually have the auto-immune diseases too and treat with immuno therapy for them.

I expect the hospice doctor may take her off the water pills soon because of her low b/p. But then she will blow-up with more edema. It’s a roller coaster ride.
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I'm sorry for everyone who has lost someone to CHF and to the people who have loved ones currently dealing with CHF end of life. My mom also has these symptoms but they are currently manageable. I find comfort knowing that when her time comes I can reach out for support from you all. I don't have any answers for the OP, only prayers. ❤❤
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Reply to AndreaE
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What is the EF (ejection fraction?) That's a measure of heart's pumping efficiency. That's determined by an echocardiogram.

My dad was on hospice for CHF for about 6 months when he passed. He had both leg edema and was on an oxygen concentrator. He just got weaker and weaker, His last EF, from an echocardiogram done about 4 months before he died, was about 30%.

Father in law had same issues, in AL with full time private caregivers, had an EF of 13% shortly before he passed away.

So depending on the EF, could be months to weeks. When the pacemaker battery dies, that may be the end as well.
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Reply to BBS2019
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nymima Jul 4, 2020
No idea what her EF is now. She’s been on hospice for over a year and we no longer see her cardiologist or EP. The nurse says her heart sounds weaker than before. I suppose her EF has gone down.
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That is exactly how my dad passed away on June 4. He also had very bad circulation and his kidneys finally failed. He was hanging on forever suffering so. Tell momma its ok to leave and rest because she is so tired. Tell her everything will be fine. Is she holding on for some reason? Maybe to see someone?
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nymima Jul 4, 2020
I told Mom that if she was to go, that I will be okay. I don’t want her to worry. I told her I have my husband and daughter and they will take good care of me. I know I needed to say it because she is the type to hang on unless she has clear messages that all will be okay. She has no one left but me and my family and she sees us all pretty regularly. I know she doesn’t feel well. She is not accepting of death. She will fight it. I just pray that she doesn’t suffer badly. I couldn’t bear that. It’s a difficult time at this point. One foot in the grave and one foot out.
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My husband passed away last November from CHF. His EF was 15. My advice...Have a DNR in place (from hospice) and avoid any extraordinary treatments ....Focus on comfort care and meds. 24 hours before my husband died, a physician performed an invasive procedure so that “we would know we tried everything.” It created discomfort for my husband at a time when he needed to be at peace. I regret allowing this to occur.
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Reply to Emmajane1
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getting a pacer replaced is outpatient
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Reply to cetude
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unfortunately this is a common acurance with the elderly population. My mother is going through this right now and she is 82. She also has a pacemaker. The problem is the medication cannot be used forever. It causes kidney damage. So the doctor is doing the best they can for her. You might look at these moments you have with her as special moments. Think of positive activities you can do together. Create a bucket list of things to do. A list that allows her to accomplish. Even if it's as simple as reading a book with her. Or taking her on a drive somewhere she might want to go. I don't know how you felt when you found out she was sick. I felt panic and desperation to make her feel better. To get her better! She's my mom. I also had to come to terms with the fact that I won't be spending time with her probably in the near future. My mom is shutting down. She doesn't eat much. She sleeps all day. She has dementia and has started to lose her memory. So I'm putting this time we have together into something she can enjoy. I don't want to give her up but I will when it's her time. Good luck and have Happy moments.
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