She has a pace maker and is due for battery change soon.

She is full of congestion in her lungs and breathes heavy and has crackling when she breathes out. She has a lot of edema in her lower legs and is on lasix for this. She has cardiomyopathy. She has AFib almost every day. She is very fatigued.

I need to know what the pace-maker will do if her heart is unable to keep up with moving blood and fluids around her body properly? She has the pace maker to keep her heart from going below 60 beats a minute and has had it for almost 9 yrs now.

Is the pace maker keeping her going beyond the life of other body systems?

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I whole-heartedly second the idea of palliative care!

When my mother left her home to move into an Independent Living facility, one of the benefits was that there was a geriatrics doctor who had an office at the Assisted Living "sister" facility across the parking lot. Mom could get to her own appointments! Her former PCP, while a nice guy, was constantly referring her out to cardiology, neurology, etc, etc. Each trip required my taking a day off, lots of anxiety for mom waiting for results, lots of med changes which confused her.

The geriatrician did a review of all her meds and took her off all but her BP meds and adjusted those. He talked frankly with her about the need to use incontinence products if/when the need arose (My mother was the master of saying "oh, I couldn't possibly!"). He got her to see a geriatric psychiatrist who was able to get her to take her anxiety meds BEFORE she became anxious.

My point is that most of what ailed mom had to do with the fact that she was 89 and it wasn't going to get "cured". But the symptoms could be well managed without a lot of meds with side effects.

Finding a doctor who specializes in the care of the elderly with multiple systems gone awry might be a really good move to make.
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Reply to BarbBrooklyn

A palliative care approach certainly would be the right one, and I warmly encourage you to pursue that.

It's very important to avoid the pervasive background feeling that palliative care amounts to getting the coffin ready. No such thing! It's about focusing medical attention on symptoms and addressing them, rather than treating underlying disease. No heroics, like valve replacement or aggressive therapies, but every possible measure to improve her feeling of wellbeing.

Patients who will not take their medication as prescribed...

Oh dear. What can you do.

Can you... get her to give it a trial period of x days? Perhaps tied to a promise to give her additional support getting to and from the bathroom, or pre-emptive measures such as absorbent pads for her clothing or furniture?

Shock/stun her out of it by telling her brusquely that people who ignore their doctors' instructions are idiots?

Enlist a scientifically accredited family member to sit down with her and draw her pictures of how her diuretic works, and why hers can't as long as she goes at it half-assed?

Or, if her doctor is unaware that she is doing this, rat her out at the next appointment and leave it to him/her to read the Riot Act.

Or ask him/her if we could try a different formulation or type.
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Reply to Countrymouse
robinr Nov 18, 2018
Sometimes timing the diuretics can help or skipping a dose if going out...
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This is a difficult question that so many children find themselves trying to answer. When is it time to start decreasing medical treatment and just focus on maintaining a comfortable quality of life without the invasive procedures and battery changes. My question is whether your mother has said what her preferences are or what is referred to as the goals of care. What are her goals at the age of 93 with multiple medical problems? Does she want to keep living at all cost or is she saying that she is getting tired and wants to have less aggressive care? Or does she want to let nature take its course now. That is an important discussion to have with the help of her physician or with a palliative care physician who is better at these types of discussions. I do agree with many others that palliative care is the next best step, in general but I do not know what your mother wants. A battery change is relatively easy and you can always turn it off in the future, if desired. But you will have difficult questions down the road so it is better to establish a game plan now that respects her preferences.
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Reply to Ethicist1949

My husband also has Congestive Heart Failure. He began coughing very much last summer and his doctor has doubled his diuretics. She also has told us to limit his fluid intake, which I have done by cutting it almost in half.

Does she have a cardiologist? This is the person you need to speak with regarding the pacemaker. It’s my uneducated opinion, but if there is much fluid around her heart, it will eventually overcome what the pacemaker can do. The pacemaker doesn’t keep the heart beating, it regulates how it beats. If she hasn’t been to her cardiologist lately, can you take her just for your own peace of mind? .
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Reply to Ahmijoy
nymima Nov 14, 2018
We go regularly to the cardiologist. Sometimes emergency appointments because she’s had some bad afib episodes. He recommended an av node ablation, but my mother turned it down. We see him again shortly, as she will need the pace maker battery change soon and I want to keep on top of it.

She has invasive skin cancer too. We are always at the dermatologist for tumor removals that pop up almost as soon as we leave the office. Everything is starting to escalate all at once it seems. Hard to keep up.

I just wondered if the new pacemaker would push her past what her other body systems were capable of. This is so difficult.
No. 'Tisn't. Although if this is the sort with a defibrillator you'll want to discuss what to do about that, when the time comes, with whoever is leading her end of life care.

Having said that, new battery time is a crossroads, and a good opportunity to review her decisions if she would like to.

Before the appointment for that, if possible, ask for a strong focus on getting her oedema under control because it must be making her feel like *poo*. There are other diuretics, or it may be that her Lasix needs adjustment. It should be possible to improve things even if not to make it completely better. The reason to push for this is that it is not fair to make quality of life decisions until the maximum possible has been done to support her quality of life.

Do you happen to know what her most recent Ejection Fraction was? (measured by echocardiogram)
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Reply to Countrymouse
nymima Nov 14, 2018
I intend to ask about her ef%. I don’t know presently. She is on lasix - 40 mgs, but she is supposed to be on 60. She is in the bathroom all day it seems. Some days we can’t even leave the house for a walk or anything because she has to be by the toilet.

I know she will want to get the new pacemaker battery battery because she is terrified of not having it. She suffered from syncope and was passing out. I can’t imagine that the doctor wouldn’t want her to go through with a new battery - although I understand they have to give her a whole new pacemaker - but not the leads to the heart. To just change a battery would compromise the unit and would lead to a disruption of the unit if fluids were to deep inside.

I dont know of any of any other way to help her really. So many things going on with her.
My family was told the pacemaker would not keep the person alive if the other organs were failing. All it was supposed to do was keep the heartbeat regular for as long as it continued to beat.
If you can get a Palliative Care consultation, it might help you a lot with health care decisions going forward.
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Reply to Marcia7321
nymima Nov 15, 2018
TY Marcia. I think I am going to do just that. I never thought about palliative care, but so much is going on that just managing all these conditions is just not enough anymore. We are always at some doctor for something.
Nymima, I don't understand this bit - your mother is supposed to be taking 60mg Lasix but at the moment she's on 40mg? How come?

Get this seen to as soon as you can. Today would be good.

Diuretics' effectiveness doesn't work on a steady sliding scale. It's more - nothing, nothing, nothing, WOAH there you go! It's critical to reach that 'watershed' dose, if you'll forgive the pun.

If your mother seems to be spending all day in the bathroom but she's still visibly awash with excess fluid, there may be other things going on such as a u.t.i., or perhaps there's a limited flow, or whatever - I'm not a doctor, I've just been through this with my own mother.

But meanwhile the amount of oxygen her blood can carry to all her vital organs is hugely compromised because of the dilution. That's why she feels so dreadful. I should get her to her doctor's office and refuse to leave until they've either addressed this or fully explained why they can't.

My mother really minded the getting up throughout the night effect, so her wise GP cunningly adapted the instructions so that she took her second at lunchtime, and that worked for a while. Later on, she was switched to a different diuretic that she took only once a day, which worked very well for her. I'm not saying that either solution would suit your mother, only that it is worth being a squeaky wheel about the problem because there *may* be better options.
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Reply to Countrymouse
nymima Nov 15, 2018
You really have me thinking that I should be talking to her doctor about palliative care for her. My mother refuses to take the extra 20 mgs of lasix because she feels she’s in the bathroom too much as it is. It’s difficult to reason with her.

She has been on many many medications for her heart conditions and there is really no medications for her afib except Amiodarone which is out of the question for her. She already has thyroid and vision problems and with Amiodarone , there is a possibility of fatal lung disease.

With all that is going on, I never put it together that perhaps she should be getting palliative care, but now that I think of it, it feel this may be the case. She would be horrified to hear me or the doctor say anything like that.

She was recently tested for a uti and for slow flow because of her complaints of spending so much time in the bathroom. She didn’t have a uti and she did empty her bladder enough. The doctor put her on the anti-spasmodic drug for her bladder, and I believe it was working, but she has decided she didn’t need it and has stopped taking it.

Shes a tough bird when it comes to medication. She does take metoprolol, Eliquis, blood pressure meds and thyroid medication. She doesn’t fight the doctor with those meds.

We are at the cardiologist, her PCP and the dermatologist very, very often. I just never looked at it from a palliative care point of view. Thank you all. This makes sense. Blessings.
It sounds like your mom still has a good mind so you need to do what she wants done. That's what I would do with my mom.
Helpful Answer (5)
Reply to whyme327
nymima Nov 18, 2018
I have no choice. She knows what she wants! Lol. But she stops short of talking to the doctor about things. She is afraid of death. She just says she wants to live. We leave it at that.
My mom and my MIL both died with their pacemakers. It won’t keep your mom alive.
My aunt who is on hospice for Parkinson’s had hers replaced while on hospice. Her cardio said that if the battery ran out it would be unpleasant for her. So they replaced it without incident.
Your mom certainly has a lot going on.
Hugs to you both.
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Reply to 97yroldmom

Question, what is her sodium intake? I'm talking about mg, not daily percentage. With CHF, usually restricted diet. I keep MIL about 1400 mg and she went from fluid retention and crackling in lungs to clear lungs and no swelling. She also has lasix and potassium daily. Creative cooking, fresh or frozen vegetables, fresh fruits, no salt butter, LOTS of label reading, homemade waffles instead of frozen, organic maple syrup, low sodium baking powder (I found at target) got waffles down to 35 mg, compared to 610mg for frozen. No salt chips are a great treat with a little bit of dip. Good luck, don't know if this will help.
Helpful Answer (4)
Reply to Takincare
Isthisrealyreal Nov 18, 2018
Stage 3b kidney disease can not take lasix daily it is to hard on them and would move her to the need for dialysis in no time.

Exercise is the best thing to keep fluids from settling in tissue instead of cells. But with everything else going on that is difficult as well.
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