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Old 12-13-2009, 10:54 AM   #1
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Question congestive heart failure--when to go to ER

Hi,
My mom is 89 yrs old, has severe aortic stenosis, atrial fibrilliation and, now heart failure. She was hospitalized early Sept for 8 days where they diagnosed her fibrillation and put her on amiodarone and coumadin. Her stenosis is being monitored, but she's considered too frail for and doesn't want to endure open heart surgery. Her stenosis is also not considered "critical" yet.

About a month ago I noticed her eyelids were swollen. I thought she had an infection. Her cardiologist thought it was a "normal part of aging" but while I'm no doctor, I know her well and her lids looked swollen vs sagging. Last week, she felt very fatigued walking to her senior center. The fatigue increased. During the week her nose was running a bit, she had some congestion and a cough. She lives alone, but I'm 15 minutes away and check in on her regularly (she lives in a building with a doorman and many people who check in on her as well--pretty close to being one step away from independent living community.) She kept telling me she thought she was coming down with a cold. I urged her to see the cardiologist, but she refused. Thursday night, she could no longer walk up the 2 steps it takes to get her mail. But Friday, she felt totally fine, was able to get her mail and wrote the whole thing off to a cold. When I saw her on Saturday, she FINALLY showed me her legs, which were totally swollen. I realized she was in congestive heart failure. I contacted her cardiologist who told her to take 1 of her diurectic pills (the expiration date was 9/15/09) and see him on Tuesday morning (his first office hours.) He said if she has shortness of breath upon resting, then take her to the ER.

My question (and sorry this has been so long but I didn't wanna leave anything out) is: should I bring her to the ER or wait til she sees the cardiologist on Tuesday?

She's alert, but feels extreme fatigue today, her legs are still swollen. She's loath to go the ER (we live in NYC so going there is a nightmare, a typical 12 hour or more wait and VERY stressful.) If she's just feeling lethargy but only has trouble breathing when she exerts herself (like making her bed or walking the length of her apartment) is it ok to wait til Tuesday morning? (the cardiologist's office is directly across the street from the hospital and he can admit her and circumvent the ER if she needs to be admitted.)

Thanks to all very any help/answers/suggestions.

 
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Old 12-13-2009, 11:45 AM   #2
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Re: congestive heart failure--when to go to ER

Quote:
Originally Posted by lisaj 77 View Post
My question (and sorry this has been so long but I didn't wanna leave anything out) is: should I bring her to the ER or wait til she sees the cardiologist on Tuesday?

....

Thanks to all very any help/answers/suggestions.
Sorry to hear about your mom.

You seem to be pretty knowledgeable about Heart Failure, which is a good thing. As you already know, Heart Failure is a progressive disease which usually gets worse and not better and results in organ and gland failure, especially for someone your mom's age.

Both you and your mom are going to be in for very difficult, stressful and anxious times.

Your mom will have some good days and some bad days, as her disease gets progressively worse. She is going to need constant care, in a place that can offer her the care that she needs. On the other hand, your mom is not going to want to leave her home and her independence.

Her worsening symptoms are very troublesome and should be taken very seriously.

If it were me, I would look for a longer term solution, some place where she can go where she can get the care that she is going to need. Is that even possible? Is it something that you have considered?

I've had Heart Failure and Atrial Fibrillation for over 22 years, and am close to 70, and am holding my own against this dreadful disease, so I can certainly feel compassion for both of you.

Take care..... best of luck!
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Old 12-13-2009, 12:28 PM   #3
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Re: congestive heart failure--when to go to ER

Thanks, Machaon.

Yes, my mom and I have looked into long-term care alternatives. Unfortunately, she (and I) aren't in the financial position to place her in independent or assisted living (places around here are outrageously expensive.) Since she is in a two bedroom (and wants to keep her independence and I'm not in the position to move in with her and my home isn't big enough for her to move in with us) what we're thinking about is getting someone to stay with her full-time in the second bedroom. I'm hoping that my financial position will improve in the next few years and if she survives that long, I will be able to afford a place for her.

I know that everyone's different, but based on your experience with this disease, does it sound as if her illness has progressed to a critical phase yet?

 
Old 12-13-2009, 01:28 PM   #4
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Re: congestive heart failure--when to go to ER

Quote:
Originally Posted by lisaj
I know that everyone's different, but based on your experience with this disease, does it sound as if her illness has progressed to a critical phase yet?
Your mom is 89 yrs old with severe aortic stenosis, atrial fibrilliation and heart failure. She has been diagnosed as being too frail, her legs are badly swollen, but she only has trouble breathing when she exerts herself, and not at rest.

Of course, with severe aortic stenosis, there is a significant risk of sudden death.

That said, the fact that she doesn't have trouble breathing at rest, and apparently is not having problems breathing at night and can get a good night's rest, implies, to me, in my humble non-professional opinion, that, with the type of help that you are suggesting, and given your financial situation, it sounds like you have a good plan, if you can get someone to stay with her.

The human body is a remarkably tough organism. It will do everything that it can do to survive, by pouring all kinds of hormones and cytokines into the blood stream, in an attempt to keep the "motor" running. That is why many of the elderly can linger on, with major, debilitating disease, and with multiple organ failure, for so long a time.

I like your approach. I would want to do everything that I could do to keep my mom's last days, weeks, months, years, as comfortable and private and as partially-independent, and as enjoyable as I could until there were obvious signs of end-stage.

But..... sadly, you can expect to have more trips to the ER and increasingly uncomfortable symptoms as her disease(s) get progressively worse, with the greatest risk being the severe aortic stenosis.

Regards, and the best to both you and your mom in these difficult times.
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⇒ I avoid common ordinary but unhealthy household items
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Last edited by Machaon; 12-13-2009 at 01:49 PM.

 
Old 12-13-2009, 02:11 PM   #5
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Re: congestive heart failure--when to go to ER

Thanks again, Machaon.

Re: the severe aortic stenosis, one thing I am looking into is a new procedure specifically for older frail patients that doesn't require open heart surgery to replace the valve. Since she goes to the cardiologist, on average, once a month to be monitored, once her stenosis becomes critical, she will qualify to be in the trials. So I'm keeping my fingers crossed this will work and buy her a few more years.

Thanks again.

 
Old 12-22-2009, 12:32 PM   #6
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Re: congestive heart failure--when to go to ER

lisaj77

Look into the research at Beth Isreal Deaconess Hospital in Boston. There is a cardiologist there who is about to begin doing a procedure where he places a cath similiar to a cardiac catherization and repairs the valve. The procedure is meant for patients who are unable to have major surgery. This cardiologist name is Dr. Jeffrey Popma. He is also the sweetest and kindest man.
Good Luck

 
Old 12-22-2009, 01:41 PM   #7
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Re: congestive heart failure--when to go to ER

Thank you, Shisslak.

I actually know about that procedure--the trail is also being done in my home town--New York City--but I'm checking the stage the trial is in. Last I checked, they were only accepting people for the phase where they literally flip a coin--depending on the outcome you either have open heart surgery or the new procedure. I don't want to subject my mom to something like that (where her life is dependent literally on the flip of a coin.) It's possible things have changed since I last checked (last spring.)

 
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