Author Topic: Experience with Congestive Heart Failure/Pulmonary Hypertension?  (Read 8252 times)

lhamo

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This isn't a typical "AAM" type question, but this community is so awesome about sharing experience/advice on just about every other topic so I thought I'd ask.

Those of you who read my journal will know that my mom (age 85) has recently been diagnosed with congestive heart failure.  She also seems to have pulmonary hypertension.  Both are related to a history of mitral valve issues.  She's been to the ER several times in the past few weeks with shortness of breath, which is how we arrived at these diagnoses.  They are trying to use diuretics to control the fluid buildup, but are having trouble finding a balance.  An angiogram a couple of weeks ago showed no blockages or thinning of the arteries.  The doctors seem to think that her heart's pumping function is still strong, but that it isn't relaxing properly and that is leading to the backup of fluids.  There may be some issues with the lungs as well -- we're supposed to see the pulmonologist tomorrow.

My sister has been the primary support person for my mom for years now, since she lives next door, but I am trying to help more now that I am back and have a relatively flexible schedule.  Both of us are struggling a bit with trying to figure out how to cope with all of this.  We are getting mixed messages from her doctors.  Sometimes mixed messages from the same person!  I understand that the condition is complicated, systemic and difficult to predict.  So the anthropologist in me is hoping to collect some narratives from people who have been through this with their loved ones.  Just wondering what we can expect, what we should be watching for as signs of major changes/decline, and how best to plan for/cope with what is down the line.

Thanks for any information or experiences you are willing to share. 

Left

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #1 on: August 30, 2015, 04:07:40 PM »
I have chf from a murmur too close to a valve so it doesn't close all the way. I'm in my 20s but doctor recommends me to do cardio exercises to help strengthen heart. It seems to be better now than before I worked out. I can still feel the murmur when I lay down but it isn't that bad anymore like when I was in my teens.

not sure if it would help your mom but maybe get her to do light walking/biking if she doesn't regularly exercise already. But I'm not a doctor so... maybe don't take up exercising until she gets the green light.

and like other advice, make sure she isn't shoveling snow? or putting stress on the heart for long periods

MayDay

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #2 on: August 30, 2015, 05:31:11 PM »
My grandfather had it. He declined slowly, there is no cure, until he died of a stroke. Eventually he would have died from the CHF if he hadn't had the stroke.

Sparkie

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #3 on: August 30, 2015, 06:16:52 PM »
Often, with CHF the heart muscle is enlarged and 'floppy' so when it contracts it doesn't eject properly. Blood backs up in the pipes from the heart to the lungs (left side of heart) and the increased pressure forces liquid fron the pipes into the lungs (vessels wrap around the alveoli in the lungs and the boundary is one cell thick, so fluid can traverse through).

In your scenario, it sounds more like the mitral valve is weak, so even when closed, the blood travels forwards out of the ventricle, but some leaks back through the valve towards the lungs. Diruretics may help keep overall fluid levels done. At face value, it would seem that a mitral valve repair would fix up the problem. At 85 yrs old though, it would be questionable whether it could be done, or be survivable.

Maybe management is better and less risky than a 'cure'. Keep fluid levels down, sleep propped up, meds for hypertension / diruretics etc.  Expect her to be short of breath at times as her lungs fill up, reducing the flow of oxygen from the lungs to the blood. Mornings may be worse if she sleeps flat.  Managing fluid intake will be key. Tough as it is to hear or think about, at 85, stuff wears out.

lhamo

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #4 on: August 30, 2015, 07:24:43 PM »
Maybe management is better and less risky than a 'cure'. Keep fluid levels down, sleep propped up, meds for hypertension / diruretics etc.  Expect her to be short of breath at times as her lungs fill up, reducing the flow of oxygen from the lungs to the blood. Mornings may be worse if she sleeps flat.  Managing fluid intake will be key. Tough as it is to hear or think about, at 85, stuff wears out.

This is exactly where we are.  She already had valve replacement surgery in 2002.  She had an echocardiogram in May when the shortness of breath first started, and the cardiologists say her valve is still functioning well, but for some reason the pressure on the pulmonary artery has started to increase.  Suspicion is that while her pumping function is still strong, the heart muscle is starting to stiffen and does not fully relax after each pump, which means the next pump doesn't move enough fluid through the system.  They are using diuretics to manage the fluid buildup, but seems we mis-judged what the warning weight was that would tell us it was getting to high.  So she ended up back in the hospital again this weekend.  Yes, mornings are definitely when it seems to be worst.  The nurse in the cardiology practice she sees warned us about that and explained the reasons for it.  Doesn't make it any easier when my sister goes to check on her and finds she can hardly breathe. 

Regardless of what is causing it, it is pretty clear that this is now a process of deterioration with an obvious end.  We're kind of in the awful position of trying to figure out the least miserable way for her to die.  One of the tradeoffs with increasing the diuretics is that they can damage the kidneys.  But my quick googling of "dying from congestive heart failure", "dying from pulmonary hypertension" and "dying from kidney failure" lead me to believe that kidney failure is probably the route to go.  I don't know.  We asked the cardiologist on call about speaking with palliative care, and he seemed to think that was premature -- said to save it for "one of the last two hospitalizations."  But how the hell do we know where we are in the countdown to the final lap?   

She's finally supposed to get a consultation with the pulmonologists tomorrow, so maybe that will give us additional information.  We're supposed to discuss the pros and cons of putting her on oxygen.  And the cardiologist did agree that it is a good time to start looking at assisted living options, etc. 

 


Sparkie

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #5 on: August 30, 2015, 07:41:31 PM »
Sorry to hear things aren't easy to manage. Take this with a pinch of salt because I'm certainly not a cardiologist, and have never met yout gran, but double check that the heart is 'stiff' causing a reduced contraction / output. I think its more common that the heart is stretched and floppy, so can't contract as well.  If thats the case, meds such as Digoxin can increase the force of contraction, reducing back flow to the lungs, assuming the valve is still good. I'm sure you're right - just a thought. (Google cardiomyopathy, and Starlings Law for more info).


EDIT: sounds like she has restrictive cardiomyopathy, so disregard above.
« Last Edit: August 30, 2015, 07:51:05 PM by Sparkie »

Jags4186

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #6 on: August 30, 2015, 07:42:05 PM »
I'm so sorry you're going through this.  My grandmother died back in January from CHF.  She was 83 years old.

My grandmother smoked for over 60 years.  Besides being diabetic (which she controlled by diet alone) she was always healthy.  Back in October, she began hallucinating--she realized she was hallucinating and called the doctor.  Her oxygen count had declined enough that her head wasn't in the best place.

For the next 4 months it was a constant swap from hospital, to ICU, to rehab center.  Her lungs would slowly fill up with fluid, and you could hear it in her talking and coughing.  As her lungs would fill up she would become more "loopy" as her oxygen would drop.  This basically would continue until they would drain her lungs and she would perk up again.

Eventually it was becoming more frequent that she needed her lungs drained.  At this point the doctors told us that there was nothing they could do and that she would be sent home for hospice.  We never told her.  She came home and lasted about 4 days before she passed away.  I will tell you that it was peaceful, she leaned over to go to sleep and that was it.

I don't tell you this to upset you, but to let you know what could be coming down the pike.  I hope that you have better luck than we did. 

andreamac

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #7 on: August 30, 2015, 07:50:58 PM »
I'm so sorry to hear about this. My mother had heart congestive failure with pulmonary hypertension and was diagnosed around 60ish. Over a 4-5 year period she had to start being on oxygen and gradually increase the amount until she became palliative.  She was put on Viagra as well with the oxygen. It was an expensive/controversial drug at this time(7-10 years ago) but may prolong her life for a little longer.

See this note from WEDMD about Viagra: The FDA has approved Viagra's active ingredient to treat pulmonary hypertension, a rare, life-shortening lung disorder that causes high blood pressure in the lungs.

Once my mother became palliative, she had massive amounts of diuretics to stop the fluids/swelling down and did pass away from kidney failure quickly. Yes, I agree it seemed more humane than dying from smothering.

This is a terrible disease and I'm sorry to be a downer but I want you to have the true details. If you have any questions please ask away.

Funny note: I did have some weird looks when I mentioned my mom took Viagra and Botox (for a movement disorder - Dystonia) for medication :) Also the doctor recommended my mom to start drinking to control her movement disorder...
« Last Edit: August 30, 2015, 07:54:16 PM by andreamac »

Spork

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #8 on: August 30, 2015, 07:58:19 PM »
My dad has been dealing with it for quite a while.

Medically, they've been using diuretics and anti-clotting drugs.

About 9 months ago he had a mitral clip installed.  [ If you're unfamiliar, this is a procedure done through a venous catheter.  They put a clip on the valve, making it less "floppy". ]  This was moderately successful.  But he's had numerous A-fib instances after this.  (He's had probably 6 since then). 

He seems to get slightly better, then slip back, then get better, then slip back...   He almost seems to be suffering from mild depression lately (which is TOTALLY unlike him.)

bogart

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #9 on: August 30, 2015, 08:01:51 PM »
I'm so sorry you are dealing with this.

Having recently lost my dad to dementia (and related), and my MIL to lung cancer a few years back, I'm an enthusastic embracer of hospice (including for my dad who did not want to decline life-prolonging care, though there was in fact little available to him).  I'd recommend checking on whether your mom is a candidate -- it can be a great support system both for someone whose health is failing and for their (other) support system, and can be useful in navigating the health care system.  To qualify, one is supposed to be within 6 months of death, but of course that is hard to predict -- hospice itself will be able to tell you if your mom's a candidate.

GL to you.

lhamo

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #10 on: August 30, 2015, 08:05:53 PM »
Thank you all for sharing your stories.  This has been developing over the last month, and so we have had some time to process it.  Understand that the outcome is inevitable -- her system is clearly worn out and it doesn't seem like it can sustain her much longer. 

The hardest thing is that my mom has always been very active -- never missed her 2-3 mile walks around the lake unless there was a MAJOR medical issue.  She has slowed down/shortened the lengths of her walks over the past couple of years.  But now she can't make it up the little hill near her house without getting breathless.  This last phase of decline has been pretty dramatic, and much more sudden. 

The frequent trips to the ER are wearing on all of us.  The drs tell us they want to keep her out of the ER, but then do annoying things like fail to respond to our calls about increases in her weight for more than 24 hours.  Or tell us that she should be drinking up to 2 liters a day, without adding the note that in her case, the less she drinks the better -- mom was diligently drinking water even when she wasn't thirsty, because she thought she was supposed to get that 2 liters in (and that was how my sister and I had understood the instructions as well, so it isn't just mom not being with it). 

I hope we still have lots more time with my mom, but man, between this and my MILs slow and painful decline I am bound and determined to move to Oregon or another state with strong death with dignity laws if I ever get a degenerative disease.  I want to go out on my terms, and before I become a burden to anyone. 

Gin1984

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #11 on: August 30, 2015, 08:51:47 PM »
Mending hearts is a great support group for both patients and families.  See if she has one in her area.

pbkmaine

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #12 on: August 30, 2015, 09:00:07 PM »
What does she want? Does she understand her situation? My MIL had CHF, and was a nurse. She made the decision to not be treated and went into hospice. It was a good decision and she had a peaceful end, at home, where she wanted to be. The first instinct of MDs is generally to prolong life. But what about quality of life?

lvbhappy

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #13 on: August 30, 2015, 09:34:03 PM »
CHF and Pulm HTN can be manageable.  What grade and class of Pulm HTN does she have?  Viagra goes by the generic name siledenifil (sp?) when used for pulmonary hypertension.  Depending on the severity of each, it can be treated and life extended if properly managed with meds and optimization of fluid status. Sounds like they are just figuring out what will work for her and will keep tweaking her treatment until its working.  So, don't lose hope yet!

lhamo

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #14 on: August 30, 2015, 09:44:21 PM »
CHF and Pulm HTN can be manageable.  What grade and class of Pulm HTN does she have?  Viagra goes by the generic name siledenifil (sp?) when used for pulmonary hypertension.  Depending on the severity of each, it can be treated and life extended if properly managed with meds and optimization of fluid status. Sounds like they are just figuring out what will work for her and will keep tweaking her treatment until its working.  So, don't lose hope yet!

She got the initial CHF diagnosis in early August.  They haven't told us what level she is.  She has been to the ER four times and has been hospitalized twice in the last month, but does seem to respond well to the diuretics when they tweak them in the hospital/administer them by IV.  As long as the fluid is well-controlled, she doesn't have dyspnea except when she exerts herself.  She is losing strength/stamina, though -- getting harder to do activities she used to do regularly.

Pulmonary hypertension was first mentioned in the ER on Friday and we're still waiting for the pulmonology consult to get further information.  But it is pretty clearly secondary.  Her echo in May showed increased pressures on the pulmonary artery.  Today the cardiologist said the pressure level was at about 70, compared to 20-30s for someone with a healthy system.  But that was probably the level in May -- not sure if it is higher now. 

They did switch her to a combo diuretic approach yesterday, which seemed to work very well (weight dropped nearly 6 lbs, and her potassium came back up).  So hopefully between getting the fluid out, fixing the diuretic mix, and maybe adding oxygen to her CPAP at home we can stabilize things.   

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #15 on: August 30, 2015, 11:39:01 PM »

Thanks for any information or experiences you are willing to share.

I'm sorry, I'm too sleepy to do this properly but my mom has PPH and we are in the process of trying to get hospice. 

First, it is a very complicated illness. Ask the doctor to tell you the exact name of her PPH so you understand and can research the type she has. Don't let them say, "oh it's MV related, then mumbo jumbo, you need the actual type she has. I suggest you join this site and

http://www.phassociation.org/Patients/SurvivalGuideand

buy the patient's survival guide. There are many types with different trajectories.  It's confusing and this guide helps, if you join the site, you get a discount.  The site is helpful. 

Second: and to me this was the most crucial part, find THE cardiologist for PPH near where you live.  Many other docs say, "Oh, it's no big deal."  It is a big deal and you need a doc who specifically takes over the case.  I see she has a pulmonary doc, that's good, that's the second doc you need. If this case is handled properly, the cardiac specialist comes first.  Important because some pulmonary docs try to claim it's a pulmonary disease.  It is a cardiac disease with pulmonary issues.  Seriously, hunt down that cardiologist who specializes in PPH, other docs do not know how to treat it.  For instance there are meds that are over 5k a month.  The cardiologist starts them, you get a grant and they are free.  The pulmonologist  should not be touching these meds.  A grant paid for the thousands and thousands of med costs, do not panic when told about an expensive drug. These meds down the road will literally be keeping her alive. 

ok, too sleepy, can I help you tomorrow?  message me where you live and I can help to find the guru.  This is the hardest part but so important.  my mom's cardiologist for decades, told her she had this, don't worry, we don't need to change course and it was just discussed at appts if at all. I'm a hospice nurse so I knew some about this disease but most important, I knew the guru. 

I am very happy to help someone else going through this, it's complicated and stressful even when you are just starting out with this and still may feel "good". 

Good night and ask me anything and I will try to help.  I am sorry you are going through this.

MayDay

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #16 on: August 31, 2015, 06:44:59 AM »
If you are starting to think it might be time for Hospice, you need to call NOW.  People always wait too long- often at the advice of their doctors. 

If you call Hospice, they will come and do an evaluation.  They will tell you if they think she qualifies.  You do not have to sign up on the spot if your mom wants to fight a while longer.  On the other hand, the meds she is on to control the CHF may very well be increasing her comfort (helping her breathe makes her feel comfortable!) so she may not need to change anything.  But hospice will likely be better at managing her symptoms, and statistically patients live longer on Hospice because they are getting better care.  Her being in and out of the ER is not a good thing, as you are aware. 

If it is too soon, they will have a good idea of how long to wait to do another evaluation.  Look for one that is a non-profit (most for profit hospices are.... not good) and has been around a while. 

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #17 on: August 31, 2015, 08:12:15 AM »
I just left hospice d/t illness after 11 yrs.  There is no harm in getting the initial eval.  If she chooses hospice, she will most likely not be approved for the expensive drugs, unless they can be convinced they are for comfort and she is already on them. My mom is already on them and they make her able to breathe, so under Medicare regs, they cannot not take her just because of an expensive med that provides comfort. However, in my mom's case they sure are trying because they do not want that cost.  But it is much harder to get the meds once she is on the program.  So I would check at some point with an MD to see if these meds would make your mom more comfortable, before starting hospice. (not a plug, but my mom's meds have truly extended her life according to her docs)

Our hospice has a CHF protocol, we even give IV diuretics if necessary.  My mom goes weekly to the CHF clinic to get IV meds, the trip is killing her.  I would ask if your hospice has this type of program so when she is in distress, the nurse already has the orders for what to do. 

If it's only been a month and she still tries to get outside, Palliative Care is a great option, it's the step before hospice.  On that, she keeps her regular insurance and unlike hospice, she can have diagnostic tests, palliative (not curative care), she can have any meds ordered and can go to the hospital without the hospice rigamarole for inpatient care.  She still gets a nurse, an aide if necessary and a social worker and they have a doctor who can answer questions about what to do in certain situations and oversees the case.  He does not order her anything, she keeps her regular docs. And then, when ready, she transitions to hospice.  CHF and PPH are closely tied together, which makes some MDs question what to try next. I would still try to find a cardiologist who is good with PPH and he would follow her CHF. It is another cardiac disease with pulmonary symptoms, but I have never seen a pulmonologist manage it.  Just primary docs and cardio, with pulmonary on the team

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #18 on: August 31, 2015, 08:32:37 AM »
I'm so sorry to hear about this. My mother had heart congestive failure with pulmonary hypertension and was diagnosed around 60ish. Over a 4-5 year period she had to start being on oxygen and gradually increase the amount until she became palliative.  She was put on Viagra as well with the oxygen. It was an expensive/controversial drug at this time(7-10 years ago) but may prolong her life for a little longer.

Once my mother became palliative, she had massive amounts of diuretics to stop the fluids/swelling down and did pass away from kidney failure quickly. Yes, I agree it seemed more humane than dying from smothering.

this has been our trajectory, we are at the massive amounts of diuretics part.  She takes 3 of them in doses higher than I have ever seen in 23 years of nursing. Plus, once a week, more often if needed, she gets 2 more high doses of diuretics at the the cardiac clinic.  All that and she should be constantly peeing and clear urine.  nope, kidneys are slowing down and her urine is already dark, her renal function is a side effect of the years of diuretics.  It becomes impossible to balance the two conditions.  ITA, I would rather she die in kidney failure, which is not painful, than for them to take away her meds, especially the expensive one, that keep her comfortable and she, instead, dies full of fluid, gasping for air and have even more edema in her legs, which is already painful because the diuretics cannot get rid of all the fluid anymore.  From my hospice perspective, dry and slipping into terminal kidney failure, trumps a fluid filled death any day.

Is she on oxygen yet? That helps. 

little_brown_dog

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #19 on: August 31, 2015, 08:52:23 AM »
I am sorry to hear about your mom. My grandmother had CHF and eventually passed away in her late 80s. She was in a nursing facility for the last few years so our experience is going to be very different from someone who’s family member is still living independently or is cared for by family. My grandmother had to move to an assisted living facility and then nursing facility due to fall risk as opposed to the CHF specifically.
I wasn’t involved in her care (would just visit when I was in state) but over time like most chronic conditions, she had to take more medications and would receive supplemental oxygen due to increased breathing difficulties. I believe she also had some physical therapy for breathing and moving her legs to keep circulation going.
Doctors are probably giving wishy-washy advice or timetables because of her age and the fact that this illness progresses uniquely in each patient. Aggressive cardiac treatments/interventions are usually not pursued for the elderly as many docs try to balance the lower quality of life that accompanies prolonged recovery time with very minimal benefits/gains in lifespan. 
While it wasn’t easy to watch, I would actually say her disease progression and eventual passing appeared to an outsider to be less….uncomfortable/distressing/violent….than those I have seen pass away from cancers or other illnesses. From what I understand from my dad who was with her when she died, she was relatively peaceful and it didn’t seem painful or frightening.
+1 on finding a high quality hospice or nursing facility that can respond to her growing needs.
My other advice would be to advocate on your mom’s behalf if needed when speaking to her clinicians. Voice concerns about quality of life and always ask how a new medicine or treatment will affect her mood, appetite, mobility, etc. At this point, a lot of it is about preserving her quality of life instead of delaying the inevitable. I would also make sure you have a copy of her healthcare proxy on file, and a do not resuscitate (DNR) order (if that is important to her).

squatman

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #20 on: August 31, 2015, 07:14:01 PM »

Quote

 We asked the cardiologist on call about speaking with palliative care, and he seemed to think that was premature -- said to save it for "one of the last two hospitalizations."  But how the hell do we know where we are in the countdown to the final lap?   


Ugh, this cardiologist sounds like one of the thousands of doctors who has no clue how to properly utilize palliative care (sorry, I do research and consulting for hospitals on post-acute care and cardiovascular procedures so this topic hits home!). If you're waiting until one of the last two hospitalizations, you're in hospice mode or beyond at that point. Palliative care can be for all sorts of people, but it's best as sort of a pre-hospice hybrid option for patients generally within a year or two of death. A few quick points/myths to bust:

1) Palliative care does not preclude curative therapies. CHF is one of the classic conditions palliative care is good for, where people can still receive their normal medications, even surgical procedures (if applicable).
2) Palliative care is all about making your mom feel better. It's symptom management, but also spiritual/emotional/psychosocial/etc care. Many hospitals have outpatient forms of this, so your mom could be visited either as part of a PCP visit, at an ALF if that's where she's headed, or even at home.
3) Palliative care does a great job of preparing people for hospice options and other end-of-life situations that lead to outcomes other than dying in a hospital bed.

If I were in your shoes, I'd ask your mom's PCP, search the local hospital's website, ask another cardiologist, ask the local hospices - anything you can to get your mom into palliative care.

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #21 on: August 31, 2015, 07:54:39 PM »
Palliative care is a wonderful program, IDK why it's taken so long for insurers to jump on board, it's been proven to save overall costs and it benefits patients, a win/win.

Ironically, today we heard back from hospice, they won't take my mom because of the expensive PPH drug she is on.  When it is cut back she gasps for air 24 hrs a day, so besides keeping her alive, it is a comfort measure and hospice has had new Medicare regs that they have to accept these patients if the med is for comfort. Having worked there, the hospice doc called me, gave me all these great reasons my mom should get Palliative Care, not hospice. They rejected her and if you took one look at her you would see a suffering person not long for this world. I told the doc that and asked why the Medicare regs were not being applied to my obviously hospice appropriate mother.  She said her super duper cardiologist wrote that she has some rare form of PPH.  Medicare does not list that one as one that hospice must cover the comfort meds even if expensive.  But that does not mean that just because they don't have to, they cannot take her case.  They could and pay for the med, they are choosing not to.  I am beyond furious. 

I had a plan of the steps to take to appeal, but forget it, we'll just take Palliative Care.  Partly because the medical director is a hospice doc who will keep in touch with the other hospice docs and they will transition my mom over when she agrees to stop the med (she will die in 2 weeks, the doc said. My mom is dying but not that fast so to get the care she needs she has to give up the med that helps her breathe and without it she will die in 2 weeks. Complete BS.). I was worried Palliative Care would not be as experienced as hospice in pain and meds for breathing but now that I know the medical director there, I feel more comfortable. 

But it is still flat out wrong to deny a dying patient because you happened to find a loophole to get out of paying for the med that keeps her from gasping for air.  My mom blew right past the palliative care stage and it is time for hospice and how someone interprets the reg, she cannot have it. 11 years as a hospice nurse and I can't get my own mother ,who volunteered there, onto hospice.  I want to be mad at her PPH specialist but he has no clue that only certain types of PPH can stay on their meds and have hospice. And I have to credit him, without him, my mom would've been gone years ago since her cardiologist claimed it was "nothing" so he did "nothing". 

tonight I am very disillusioned by our healthcare system.  Hospice was always different, a whole different type of care that I wholeheartedly believe in, or I did until today.

pbkmaine

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Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #22 on: August 31, 2015, 07:59:35 PM »
Very frustrating, FLA. We do not do death well in this country. I hope I am well enough to get to Switzerland or Belgium when my quality of life disintegrates and it's time to go.
« Last Edit: August 31, 2015, 09:15:10 PM by pbkmaine »

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #23 on: August 31, 2015, 08:20:50 PM »
Very frustrating, FLA. We do no do death well in this country. I hope I am well enough to get to Switzerland or Belgium when my quality of life disintegrates and it's time to go.

we don't.  And the sad part is, most patients want to die comfortably at home, not in the hospital on a vent at 89. With the right publicity and education and support from doctors, we could do a whole lot better.  That decades later, doctors are still not quite sure about hospice says a lot.  Patients depend on their doc to tell them when it's time to start talking about how they want the dying process to go.  It does not have to be like this.

squatman

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #24 on: August 31, 2015, 08:37:53 PM »
Palliative care is a wonderful program, IDK why it's taken so long for insurers to jump on board, it's been proven to save overall costs and it benefits patients, a win/win.

Ironically, today we heard back from hospice, they won't take my mom because of the expensive PPH drug she is on.  When it is cut back she gasps for air 24 hrs a day, so besides keeping her alive, it is a comfort measure and hospice has had new Medicare regs that they have to accept these patients if the med is for comfort. Having worked there, the hospice doc called me, gave me all these great reasons my mom should get Palliative Care, not hospice. They rejected her and if you took one look at her you would see a suffering person not long for this world. I told the doc that and asked why the Medicare regs were not being applied to my obviously hospice appropriate mother.  She said her super duper cardiologist wrote that she has some rare form of PPH.  Medicare does not list that one as one that hospice must cover the comfort meds even if expensive.  But that does not mean that just because they don't have to, they cannot take her case.  They could and pay for the med, they are choosing not to.  I am beyond furious. 

I had a plan of the steps to take to appeal, but forget it, we'll just take Palliative Care.  Partly because the medical director is a hospice doc who will keep in touch with the other hospice docs and they will transition my mom over when she agrees to stop the med (she will die in 2 weeks, the doc said. My mom is dying but not that fast so to get the care she needs she has to give up the med that helps her breathe and without it she will die in 2 weeks. Complete BS.). I was worried Palliative Care would not be as experienced as hospice in pain and meds for breathing but now that I know the medical director there, I feel more comfortable. 

But it is still flat out wrong to deny a dying patient because you happened to find a loophole to get out of paying for the med that keeps her from gasping for air.  My mom blew right past the palliative care stage and it is time for hospice and how someone interprets the reg, she cannot have it. 11 years as a hospice nurse and I can't get my own mother ,who volunteered there, onto hospice.  I want to be mad at her PPH specialist but he has no clue that only certain types of PPH can stay on their meds and have hospice. And I have to credit him, without him, my mom would've been gone years ago since her cardiologist claimed it was "nothing" so he did "nothing". 

tonight I am very disillusioned by our healthcare system.  Hospice was always different, a whole different type of care that I wholeheartedly believe in, or I did until today.

Can you get a second opinion? Go back to the cardiologist and explain the situation? They get paid either way, so I'd imagine there could be some level of flexibility. Given that the main qualifier for hospice is "doctor opinion that patient has <6 months to live", I feel pretty confident the cardiologist could be shown reason. Hell, she might not even need to change the PPH diagnosis - if some other diagnosis is also potentially fatal, that could be the one that gets her into hospice with the PPH drug being kept on as comfort.

squatman

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #25 on: August 31, 2015, 08:46:31 PM »
Very frustrating, FLA. We do no do death well in this country. I hope I am well enough to get to Switzerland or Belgium when my quality of life disintegrates and it's time to go.

we don't.  And the sad part is, most patients want to die comfortably at home, not in the hospital on a vent at 89. With the right publicity and education and support from doctors, we could do a whole lot better.  That decades later, doctors are still not quite sure about hospice says a lot.  Patients depend on their doc to tell them when it's time to start talking about how they want the dying process to go.  It does not have to be like this.

Agreed, but it's a really tricky situation. We have developed a strong medical culture that equates hospice with failure (in the doc's eyes, they're "giving up" on the patient). Also, many docs just don't want to have this conversation with patients. I see that all the time - PCPs and specialists passing the buck to each other and saying "not my job!". Oncologists are about the only specialists who tend to do this type of thing well.

On the flip side, we also have a huge problem with explaining true outcomes of treatments to patients. Yes, plenty of people would rather die at home than in a hospital, but that's in a vacuum. When we present a situation to a patient as "well, we can do X treatment, and it may help.", often times may help actually means something like this: a 5% chance of a couple of extra painful weeks, a 5% chance of some modestly positive outcome, and a 90% chance of dying within 2 days in a hospital. Patients aren't shown that entire picture, just "it may help." In defense of the docs, however, plenty of patients either don't want to hear about the potential downsides or will cling to any amount of hope/miracle/etc for curative therapies. All parties involved have a long way to go before dying "right" becomes a more common thing.

lhamo

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #26 on: September 01, 2015, 10:44:57 PM »
Thank you all so much for generously sharing your time, your experiences and your insights with us.  It really helped over the last couple of days.

Mom went home today.  Final verdict seems to be that it is more heart than lungs, though she did respond well to a nebulizer treatment during lung testing today, so that has been added to her treatment plan.  We will have another follow up with the pulmonary specialist tomorrow to go over the results of all the tests she did today. 

Main thing is to control the fluids.  We did end up meeting with the palliative care doc and she was GREAT.  She helped mom go through the POLST, among other things, so it is very clear what mom wants in terms of her care.  She has an advanced directive, but as those are written in legal, not medical, language they are difficult for front line care people to interpret, so they often ignore them. 

Will keep it short for now.  I'm pretty beat at this point and need to get up early again tomorrow to get mom to her morning appointment. 

Thanks again for all your input.  This community is so awesome....

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #27 on: September 02, 2015, 10:01:57 PM »


Can you get a second opinion? Go back to the cardiologist and explain the situation? They get paid either way, so I'd imagine there could be some level of flexibility. Given that the main qualifier for hospice is "doctor opinion that patient has <6 months to live", I feel pretty confident the cardiologist could be shown reason. Hell, she might not even need to change the PPH diagnosis - if some other diagnosis is also potentially fatal, that could be the one that gets her into hospice with the PPH drug being kept on as comfort.

my mom slept on everything because I was ready to get her what she needs no matter what it takes.  She came to the conclusion that she will not give up that med until she truly can no longer ingest it, it helps her that much that she would refuse hospice rather than be taken off it. She will not go from Palliative Care and her team of caregivers she will know and trust, to hospice when she can no longer swallow and close to death. "they won't help me now, I do not trust them to do so when I die."

And we decided if that is the case, we are not going to use the Palliative Care group they recommended because it is staffed by a hospice doc so her "transition to hospice will be smooth".  Neither of us believes this BS anymore.  So we are doing VNA Palliative care, which was created by and is staffed by hospice old timers I've known forever. The director who was my hospice director but I have not seen her in 6 years, called me from home on her day off to tell me "let all the worry go, we've got this, you know we do and your mom will get the best care we can give."  The nurses and aides have called. I'm just praying it really will be as good as they say because this hospice thing has me so upset, if I can't trust hospice, who can I trust?

so we're not going to pursue a second opinion. This guy is the guy in our area for PPH, he has kept my mom alive and "let her go on hospice" but agree to still be her doc, he said she is the first person he has ever agreed to do this for.  The Palliative Care doc is a cardiologist, as well so he should be able to read everything our doc wrote, fully understand it and be able to come up with a plan for breathing and pain. 

I still so want to take some sort of action out on hospice.  But I need to think this over long and hard and at least wait to make sure the PC team is going to be able to help her. 

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #28 on: September 02, 2015, 10:05:53 PM »

Mom went home today.   
   We did end up meeting with the palliative care doc and she was GREAT.  She helped mom go through the POLST, among other things, so it is very clear what mom wants in terms of her care.   

I am so GLAD she is home and things are looking up and that you like the PC doc. Does your area offer in home palliative care? Then a nurse could be monitoring the fluid situation closely, she could get an aide, etc. 

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #29 on: September 02, 2015, 10:16:18 PM »

Oncologists are about the only specialists who tend to do this type of thing well.

 All parties involved have a long way to go before dying "right" becomes a more common thing.

I started out in oncology and have had my hand in it through various roles over 23 yrs.  Yes, there are many oncs who do this well.  However, I'd say there are a large number of those who are not so hot at it.  They try but if they don't want to upset the patient by using the word "dying", yet at the same time manage to get them to agree to hospice, that is hard and truly clever verbiage.  But then hospice visits and realizes the patient has no idea they are dying, they failed to understand the doc's real message and exactly what hospice is for and it's up to us, total strangers, to try to talk them through what is happening, what they want, etc.  And that sucks.

we have made some progress but it is laborious and frustrating and we have the idiots who created fear of death panels to overcome

WildHare

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #30 on: September 03, 2015, 07:50:13 AM »
My mom was diagnosed with CHF about 8 years ago.  She is 87.  We are careful about how much she drinks, keep her as active as possible, and make sure she takes her meds.  Her cardiologist is very good and answers any questions. She recently survived pneumonia.  When she was diagnosed, I thought it was an automatic death sentence. 

lhamo

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #31 on: September 03, 2015, 10:28:18 AM »
((((((FLA)))))))))  I'm so sorry you are getting the runaround, but I'm very glad you and your mom came to a consensus about what is best.  Yes, staying on the expensive drug that allows her to breathe and out of hospice does seem best, even if it makes ABSOLUTELY NO SENSE!!!!  Glad your specialist is willing to work with you and that the palliative care option will continue to work.

We had a significant development yesterday after meeting with the pulmonologist mom was originally supposed to see.  He was MUCH better than the wishy washy guy we were dealing with in the hospital.  He had her do a walking test, and her blood oxygen went down from 95% at rest to 91% after just a few minutes of slow walking.  Went through her other test results with us, which showed significantly diminished lung function both inhaling and exhaling.  She is at about the 50-65th percentile for her age/weight/ethnic background.  Oxygen diffusion is at 100% once the diminished volumes are taken into account, though.  He saw some irregularities on the CAT scan, which could be inflammation or could be something else -- he's ordered some blood tests to look into that further.  No mention of doing a right heart catheterization, which is what everyone in the hospital was saying was the next likely step.  He put her on a once a day inhaler (Breo) to try to open up the lungs, and gave us enough free samples for her to use until her next appointment.  Nice that we didn't have to get yet ANOTHER prescription.  And he upped her lasix dose for the next few days because he noticed some swelling in her legs and probably also heard sloshing in her lungs. 

Unfortunately the palliative care team at the hospital my mom goes to (where all her specialists are affiliated so she can't change easily) only works with in-patients.  They mentioned a couple of other hospitals in the area that have outpatient palliative care, but I don't think that is going to be viable for us.  Basically we are all just going to do our best to keep her out of the ER/hospital.  And we're going to start looking into possible assisted living facilities she could go to if/when the burden of care becomes too much for my sister and I to juggle.

Fingers crossed that we get through the weekend without another round of deterioration.  She's on 80mg of lasix for the next two days, so hopefully that will help keep the fluids down.

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #32 on: September 03, 2015, 11:02:35 AM »

Fingers crossed that we get through the weekend without another round of deterioration.  She's on 80mg of lasix for the next two days, so hopefully that will help keep the fluids down.

the new doc sounds like a keeper! I don't know if you have this or if your mom is even at this stage, but we have several cardiac clinics that are outpatient.  For instance, my mom goes once a week, they draw her blood, review her wts, check her lungs and degree of edema and once that is all put together, they decide if she needs IV diuretics (she always does, lol).  This has saved us so many trips to the ER for CHF.  And if she's really bad, they just have her come more often. It is very hard for her to get out and I'm hoping Palliative Care can do something similar at home.  But if you keep having CHF exacerbations leading to ER or admissions, something like this might help.

bogart

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #33 on: September 03, 2015, 12:30:23 PM »
Ironically, today we heard back from hospice, they won't take my mom because of the expensive PPH drug she is on. 
...
tonight I am very disillusioned by our healthcare system.  Hospice was always different, a whole different type of care that I wholeheartedly believe in, or I did until today.

I'm so sorry you and your mom are dealing with this.  I didn't put this in my original post to the OP (because it didn't seem relevant) but hospice went "back and forth" (only verbally with us) on this with my dad as he was declining into dementia ... they would say that if he needed such-and-such care they couldn't cover it -- but this was silly, because he was on Medicare and Medicaid and THEY covered it, even if not through hospice.  Initially, I pointed that out to them (the silliness), but then I learned just to say, "If he has to choose between hospice care and care that will prolong his life, then he chooses care that will prolong his life, every time."  This (life-prolonging care) would not have been my choice in his shoes, or mine for him except that he had always, always, always made it very clear that that was what he wanted -- to live as long as possible, no matter what.  So we got hospice, but were prepared to drop it (in the end that wasn't necessary, as he didn't need any life-prolonging care while under hospice care.  But that was impossible to know up front, in his case).

Supposedly rules are changing so that hospice and care that prolongs life (even if it doesn't cure anything) can be used together.  But clearly based on my experience, not fully, as implemented.  Tedious, but obviously I am still an advocate of hospice when appropriate, provided someone's there to serve as a patient advocate and say yes/no.  I'm sorry it (hospice) isn't being made available to your mom, as clearly it should be.

FLA

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #34 on: September 03, 2015, 01:58:53 PM »

Supposedly rules are changing so that hospice and care that prolongs life (even if it doesn't cure anything) can be used together.  But clearly based on my experience, not fully, as implemented.  Tedious, but obviously I am still an advocate of hospice when appropriate, provided someone's there to serve as a patient advocate and say yes/no.  I'm sorry it (hospice) isn't being made available to your mom, as clearly it should be.

Thank you.  I'm sorry about your dad. Despite regs changing and hospice being required to pay for care that is palliative and for comfort, there are certain diagnoses that are really shut out.  They will never pay for dementia meds like namenda and aricept because they don't provide comfort and have actually been shown to increase symptoms when it is end stage.  So you would think you could just have Medicare or Medicaid or your drug plan cover it. This works for a while but then you get a letter saying, since your dad is on hospice for dementia, these meds are not covered dating back to when he came on. And you're stuck with a big bill. Because once on hospice for a certain diagnosis, the Medicare benefits for that diagnosis are paid for now by hospice, not Medicare. Hospice is totally responsible for the meds that relate to the diagnosis.  So if they deny meds and you get them anyway, it takes a long time but it's eventually discovered that hospice declined it so they should not have allowed you to get these meds.  That's why even though my mom has a grant making the 5k a month drug free, once on hospice for that diagnosis, she is no longer allowed to use that grant and get the med, hospice would be required to take it on.

I'm just bitter because on my mom's case, it's not clear cut like with the dementia regs, they didn't have to pay but they could've paid, they chose not to. And presented her with a very unappealing death scenario. They play with the rules hard and fast in terms of what they will cover.  And they came right out and said, yes, they could've covered the med, they just won't.  And in 11 yrs, I never heard them say stop the med, come on the program but you will be dead in 2 weeks to someone who very likely has months to live.  And you will have trouble breathing and accumulate fluid.  What? I have never seen it presented like this, openly saying it would be a bad death.  I think the doc just felt comfortable saying it to me because she worked with me for so long. Well, she doesn't know me very well if she thinks, I'd let that happen. 

Dementia is so hard, I'm sorry you had to go through that.  And they often decline so slowly, hospice has to eventually discharge them and then pick the back up when they are closer to dying.  It's so hard on the families. 

MBot

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #35 on: September 03, 2015, 03:47:59 PM »
Commenting so I remember to reply later

bogart

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Re: Experience with Congestive Heart Failure/Pulmonary Hypertension?
« Reply #36 on: September 03, 2015, 07:49:36 PM »
Thank you.  I'm sorry about your dad.

Thanks.  I'm so sorry about your mom's situation, she's lucky to have you to advocate for her.