Heart failure management in elderly
January 9, 2024 9:03 PM Subscribe
My dad was recently diagnosed with heart failure. His vitals are good but he’s tired all the time. Not much has been explained to me about how to manage it (other than, must have diuretics, and sodium and fluid management). Reading about HF actually is overwhelming on an emotional level because it’s so scary.
So if anyone has tips from experience on this, I would appreciate it. Eg it’s been two weeks since he was diagnosed, and yesterday was the first I’d heard about daily weighing being important.
He has bad apneas, but wouldn’t tolerate a CPAP. I don’t think. Maybe he would.
His pro BNP last night was 2,857 ng/L. Three troponin-I tests: two done the night before last got 172 ng/L, then 212; last night, 125. They said no sign of heart attack on EKG, that it is because of HF. (Hospital 2, which gave him a shot of furosemide said that, the hospital I took him to the night before released him without a diuretic and said it could be demand from a UTI? Or else some curious thing that would take too long for them to figure out inpatient given risk of increasing hospital-based delirium. Firmly rejected by hospital 2.)
Please tell me POSITIVE tips and please don’t say “he’s old and worn out and so what” and to get ready for him to die because I absolutely cannot handle any talk like that. I want to focus on giving him the best quality of life for the longest time I can.
So weighing him is important. What else to look out for? Do?
He’s wobbly on his feet - common? Drug or condition caused?
Did something VERY strange that makes me thing his brain is suffering a lack of oxygen. Does a pulse oximeter tell you that his whole body including brain is getting oxygen at that level?
How can I optimize his care?
I can’t read patient subs on the matter, can’t even read pamphlets. That’s why I’m asking. (But please don’t worry about my response to this - please focus on ELI-5 digestible and emotionally neutral to positive tips on day to day management of HF. His cardiologist, two weeks ago, told me basically nothing. I don’t even know what kind of HF he has.)
Also has a pacemaker, afib, hypertension, an AAA.
So if anyone has tips from experience on this, I would appreciate it. Eg it’s been two weeks since he was diagnosed, and yesterday was the first I’d heard about daily weighing being important.
He has bad apneas, but wouldn’t tolerate a CPAP. I don’t think. Maybe he would.
His pro BNP last night was 2,857 ng/L. Three troponin-I tests: two done the night before last got 172 ng/L, then 212; last night, 125. They said no sign of heart attack on EKG, that it is because of HF. (Hospital 2, which gave him a shot of furosemide said that, the hospital I took him to the night before released him without a diuretic and said it could be demand from a UTI? Or else some curious thing that would take too long for them to figure out inpatient given risk of increasing hospital-based delirium. Firmly rejected by hospital 2.)
Please tell me POSITIVE tips and please don’t say “he’s old and worn out and so what” and to get ready for him to die because I absolutely cannot handle any talk like that. I want to focus on giving him the best quality of life for the longest time I can.
So weighing him is important. What else to look out for? Do?
He’s wobbly on his feet - common? Drug or condition caused?
Did something VERY strange that makes me thing his brain is suffering a lack of oxygen. Does a pulse oximeter tell you that his whole body including brain is getting oxygen at that level?
How can I optimize his care?
I can’t read patient subs on the matter, can’t even read pamphlets. That’s why I’m asking. (But please don’t worry about my response to this - please focus on ELI-5 digestible and emotionally neutral to positive tips on day to day management of HF. His cardiologist, two weeks ago, told me basically nothing. I don’t even know what kind of HF he has.)
Also has a pacemaker, afib, hypertension, an AAA.
Also, people may want to talk about palliative care with you eventually. Do not panic. What this means in practice is that the goal of all treatment is to make your dad comfortable. When it's the right time, it will be the right choice. Comfortable people live better and (paradoxically) often longer.
posted by plonkee at 2:32 AM on January 10 [8 favorites]
posted by plonkee at 2:32 AM on January 10 [8 favorites]
I don't have tips, but wanted to share with you that my brother in law has heart failure, diabetes, a pacemaker, some kidney failure, and has been hobbling along like that for something like 15 years now, with no sign that he won't be here for 15 years more. He also is not able to take good care of himself, and he lives alone. His life isn't perfect -- it got a lot better after he had a stroke and the government decided he was therefore disabled, finally, because before that he was in abject poverty and about to be homeless. But he manages. People do manage with very poor health for sometimes a very long time.
posted by shadygrove at 6:26 AM on January 10 [2 favorites]
posted by shadygrove at 6:26 AM on January 10 [2 favorites]
All this is so overwhelming, good for you for reaching out for more information and help.
This is a one pager you can print out for the fridge that gives you a daily picture of what is considered normal or a 'red flag' for someone with heart failure (google "heart failure stoplight form" for other versions).
There are a lot of other accessible resources.
A question for the doctor is do they have a connection to a heart failure-specific program or clinic they could refer to.
These programs tend to have a more patient-centered approach, where the patient has a direct number to reach a nurse with questions, there may be a pharmacist not he team who can make small medication adjustments as needed, etc.
Your dad has a complicated and seemingly pretty severe set of cardiac conditions that are going to really impact his overall well being and have lots of weird effects that you might not see listed on list of heart failure symptoms. So it makes sense that you're overwhelmed and confused.
One question to consider - depending on you, your dad, and your relationship, is to start to explore what his values are around quality of life. Consider requesting a Palliative Care consult from his PCP or cardiologist. Palliative care is not the same as hospice. But they are specialists who focus on comfort - something other specialists are usually not very good at. They are much more trained in helping families understand the big picture, what to expect, and how to weigh the many interventions and medications that are likely being recommended with overall values and quality of life.
posted by latkes at 6:56 AM on January 10 [4 favorites]
This is a one pager you can print out for the fridge that gives you a daily picture of what is considered normal or a 'red flag' for someone with heart failure (google "heart failure stoplight form" for other versions).
There are a lot of other accessible resources.
A question for the doctor is do they have a connection to a heart failure-specific program or clinic they could refer to.
These programs tend to have a more patient-centered approach, where the patient has a direct number to reach a nurse with questions, there may be a pharmacist not he team who can make small medication adjustments as needed, etc.
Your dad has a complicated and seemingly pretty severe set of cardiac conditions that are going to really impact his overall well being and have lots of weird effects that you might not see listed on list of heart failure symptoms. So it makes sense that you're overwhelmed and confused.
One question to consider - depending on you, your dad, and your relationship, is to start to explore what his values are around quality of life. Consider requesting a Palliative Care consult from his PCP or cardiologist. Palliative care is not the same as hospice. But they are specialists who focus on comfort - something other specialists are usually not very good at. They are much more trained in helping families understand the big picture, what to expect, and how to weigh the many interventions and medications that are likely being recommended with overall values and quality of life.
posted by latkes at 6:56 AM on January 10 [4 favorites]
(I apologize for not reading closely - I see now you don't want patient handouts)
posted by latkes at 7:00 AM on January 10 [1 favorite]
posted by latkes at 7:00 AM on January 10 [1 favorite]
A question for the doctor is do they have a connection to a heart failure-specific program or clinic they could refer to
The hospitals you've been to might also be able to refer you to either organizations or advisors (they might even have some in-house resources, including social workers). I'd call them and say I need to know more about how to care for a released patient and what resources exist to help with that, do they offer any assistance.
posted by trig at 7:36 AM on January 10 [2 favorites]
The hospitals you've been to might also be able to refer you to either organizations or advisors (they might even have some in-house resources, including social workers). I'd call them and say I need to know more about how to care for a released patient and what resources exist to help with that, do they offer any assistance.
posted by trig at 7:36 AM on January 10 [2 favorites]
i have heart failure. i am 43 and was diagnosed at 36. things are different in the elderly, but the broad strokes apply. i have several other heart issues, and a crt-d ("pacemaker plus" for lack of a better lay description).
i won't get into my whole experience, but it did take me several appointments with several docs to eke out the info that was necessary. ask for another appointment, specifically request a longer appointment, so that you and your dad can ask questions. make sure that you're his trusted contact or whatever and that you've signed that office's form saying they can release his health info to you.
i am not a doctor and this is not medical advice, his case is different than mine, talk to his doctor, blah blah.
what meds is he on? there are now "four pillars" of heart failure management and for optimized care he should be on all 4 drug classes.
does he have heart failure with preserved or reduced ejection fraction? if reduced, what is his EF? (a cardiac echo is needed to determine this. not invasive or painful at all, just an ultrasound machine moved over your heart area.)
since this is a new thing, weigh daily. an increase of a few pounds means you're retaining fluid. your doc will have probably advised to take a higher dose of the diuretic that day, but don't do that without doc advice. if you've gained over a few pounds and are having symptoms, that's worth a call to your doc right then to a) let them know and b) get advice. it may be to take a diuretic or it may be to go to the ER.
meds vary, but a lot of hf related drugs will make you dizzy/lightheaded in general or upon standing. for the elderly i'd say be very aware of this and warn dad to take it slow standing up and maybe have a cane or walker or something available. not sure. i just power thru but i'm presumably a lot younger. the meds can also make you have dry mouth, which sucks a lot when you're on fluid restrictions. ice or a hard candy or gum help with that.
salt restriction is also super important. get rid of the table salt shaker if you have one. no fast food, etc. if you're able to prepare meals for dad, that's probably best as you can leave all the salt out and buy the "low/no salt" version of beans and stuff. there's salt in everything unfortunately, so it is hard to get a good handle on it, but you'll learn as you go.
HEART FAILURE IS NOT A DEATH SENTENCE. people are living longer and with better quality of life than ever before. depending on your dad's personality, age, and mindset, he may be really messed up over this news of heart failure. i sure was. so watching his mental health is also important.
finally, if possible see a heart failure specialist. if not possible, see a cardiologist. if that's not possible, i guess a GP. my experience is that GPs aren't keeping up with the newest HF stuff (like new drugs), and you'll get far better care with an HF specialist.
posted by misanthropicsarah at 8:15 AM on January 10 [9 favorites]
i won't get into my whole experience, but it did take me several appointments with several docs to eke out the info that was necessary. ask for another appointment, specifically request a longer appointment, so that you and your dad can ask questions. make sure that you're his trusted contact or whatever and that you've signed that office's form saying they can release his health info to you.
i am not a doctor and this is not medical advice, his case is different than mine, talk to his doctor, blah blah.
what meds is he on? there are now "four pillars" of heart failure management and for optimized care he should be on all 4 drug classes.
does he have heart failure with preserved or reduced ejection fraction? if reduced, what is his EF? (a cardiac echo is needed to determine this. not invasive or painful at all, just an ultrasound machine moved over your heart area.)
since this is a new thing, weigh daily. an increase of a few pounds means you're retaining fluid. your doc will have probably advised to take a higher dose of the diuretic that day, but don't do that without doc advice. if you've gained over a few pounds and are having symptoms, that's worth a call to your doc right then to a) let them know and b) get advice. it may be to take a diuretic or it may be to go to the ER.
meds vary, but a lot of hf related drugs will make you dizzy/lightheaded in general or upon standing. for the elderly i'd say be very aware of this and warn dad to take it slow standing up and maybe have a cane or walker or something available. not sure. i just power thru but i'm presumably a lot younger. the meds can also make you have dry mouth, which sucks a lot when you're on fluid restrictions. ice or a hard candy or gum help with that.
salt restriction is also super important. get rid of the table salt shaker if you have one. no fast food, etc. if you're able to prepare meals for dad, that's probably best as you can leave all the salt out and buy the "low/no salt" version of beans and stuff. there's salt in everything unfortunately, so it is hard to get a good handle on it, but you'll learn as you go.
HEART FAILURE IS NOT A DEATH SENTENCE. people are living longer and with better quality of life than ever before. depending on your dad's personality, age, and mindset, he may be really messed up over this news of heart failure. i sure was. so watching his mental health is also important.
finally, if possible see a heart failure specialist. if not possible, see a cardiologist. if that's not possible, i guess a GP. my experience is that GPs aren't keeping up with the newest HF stuff (like new drugs), and you'll get far better care with an HF specialist.
posted by misanthropicsarah at 8:15 AM on January 10 [9 favorites]
Response by poster: Thanks everyone, for being so helpful and kind. (It’s ok latkes, an info sheet is more manageable today than last night, thank you).
misanthropicsarah - so sorry that you’re dealing with this. Thank you especially for your tips. My dad had an echo after the hospital visit two weeks ago, it was difficult to get much information at all. I had to ask about the ejection fraction which is apparently 51%. (The cardiologist took over from my dad’s previous cardiologist who’s on mat leave, so he wasn’t super familiar with my dad’s file. He kept referring to a stress test from last year, only referred to the echo when I asked about it, for all I know he was winging it…) My dad is on furosemide (was 40 mg after the 2-week-ago hospital visit, then 40 x 2 for a week per cardiologist, then back to 40; GP upped it to 60 but it wasn’t enough which I guess is why he was having issues. The other night, the hospital gave him a shot of it and I’m trying to follow up with the GP and cardiologist on what to do now. When he was diagnosed they took him off amlodipine for BP so now he just has 2 mg perindopril - his BP is high - and 60 mg edoxaban for afib.)
posted by cotton dress sock at 9:34 AM on January 10 [1 favorite]
misanthropicsarah - so sorry that you’re dealing with this. Thank you especially for your tips. My dad had an echo after the hospital visit two weeks ago, it was difficult to get much information at all. I had to ask about the ejection fraction which is apparently 51%. (The cardiologist took over from my dad’s previous cardiologist who’s on mat leave, so he wasn’t super familiar with my dad’s file. He kept referring to a stress test from last year, only referred to the echo when I asked about it, for all I know he was winging it…) My dad is on furosemide (was 40 mg after the 2-week-ago hospital visit, then 40 x 2 for a week per cardiologist, then back to 40; GP upped it to 60 but it wasn’t enough which I guess is why he was having issues. The other night, the hospital gave him a shot of it and I’m trying to follow up with the GP and cardiologist on what to do now. When he was diagnosed they took him off amlodipine for BP so now he just has 2 mg perindopril - his BP is high - and 60 mg edoxaban for afib.)
posted by cotton dress sock at 9:34 AM on January 10 [1 favorite]
Response by poster: Reviewing the ED notes, it seems the echo done the other week found an EF of 41%. Yeah it looks like the cardiologist wasn’t looking at the right echo. Great…
posted by cotton dress sock at 9:46 AM on January 10 [1 favorite]
posted by cotton dress sock at 9:46 AM on January 10 [1 favorite]
I just wanted to share that I went through this same set of feelings when my father was diagnosed. He was 75 at diagnosis - and also had high blood pressure and diabetes - and lived another 10 years before dying of something completely unrelated to congestive heart failure.
Another family member was recently diagnosed as well, and we also had some odd things happening for him cognitively right after his diagnosis and beginning treatment. It turned out that when you're 80ish, you have a lot of plaque in your blood vessels, even in your brain. When they treated him for congestive heart failure, they reduced his salt/fluids/blood pressure so much that there were vessels in his brain that his heart couldn't push the blood through anymore - there wasn't enough force behind each heartbeat to get it through. So a small area of his brain wasn't getting enough o2. This could be what's going on with your dad. A CT scan or MRI could confirm it.
He is also doing just fine now. Congestive heart failure SOUNDS a lot scarier than it is. You can live many many good years with it! It's just poorly named!
posted by invincible summer at 10:06 AM on January 10 [2 favorites]
Another family member was recently diagnosed as well, and we also had some odd things happening for him cognitively right after his diagnosis and beginning treatment. It turned out that when you're 80ish, you have a lot of plaque in your blood vessels, even in your brain. When they treated him for congestive heart failure, they reduced his salt/fluids/blood pressure so much that there were vessels in his brain that his heart couldn't push the blood through anymore - there wasn't enough force behind each heartbeat to get it through. So a small area of his brain wasn't getting enough o2. This could be what's going on with your dad. A CT scan or MRI could confirm it.
He is also doing just fine now. Congestive heart failure SOUNDS a lot scarier than it is. You can live many many good years with it! It's just poorly named!
posted by invincible summer at 10:06 AM on January 10 [2 favorites]
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For most people HF treatment is about symptom management. There are a range of different kinds of medication that can control various symptoms and it's slightly trial and error to find the two or three different medications that provide the most symptom relief with the fewest side effects. Being on top of symptoms and noting when there are changes is probably the most useful support.
HF gradually gets worse over time. These are the symptoms.
- shortness of breath that isn't related to usual exercise or activity
- increased swelling of the legs or ankles
- significant weight gain over a few days
- swelling or pain in their tummy
- trouble sleeping or waking up short of breath
- a dry, hacking cough
- increasing tiredness or feeling tired all the time
You could also look at the listed side effects of the medication he is currently taking, so that you know what to look out for on those. (But basically, if a symptom not on that list, note it anyway in case it's a side effect that could be improved).It is normal to be as scared as you are. Caring for a close relative with a chronic illness in any sense can be emotionally difficult, regardless of how much practical care you are providing. It will help your dad if you get the emotional support that you need, whether that's from a therapist, friends, or anyone else.
posted by plonkee at 2:31 AM on January 10 [4 favorites]