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Old 12-11-2020, 07:06 AM
 
184 posts, read 163,237 times
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I wasn't sure where to post this (maybe Health forum would have been better?) but does anyone have experience with a loved one diagnosed with congestive heart failure and suddenly needing to be put on oxygen 24/7?

My 75-year old MIL is currently in this situation and we are wondering what this means for her prognosis. I'm worried this means her health is rapidly declining. Or can she bounce back from this and eventually wean off the oxygen? She has not been truthful about her health issues previously (very long and complicated back story) and is clearly living in denial. Her refusal to admit to any problems has driven a huge wedge between herself and her daughter. My husband will be attending her upcoming cardiologist appointment with her but we aren't sure she will allow him to actually speak to the doctor to get an update.

She fell and broke her hip a couple of months ago, while she was in the hospital receiving IV antibiotics for an infection, and is now in a wheelchair. She is obese and has not regained the strength to use her walker and quite frankly, I don't think she ever will. Right before her hip surgery, she did sign over medical power of attorney to my husband. Would this give him rights to speak to her cardiologist? Or do the HIPAA laws supersede POA?

We don't know anyone who has been in this situation, so I thought I'd reach out here to try to gain some insight.

Thank you.
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Old 12-11-2020, 09:50 AM
 
Location: Southwest Washington State
29,037 posts, read 19,691,651 times
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Quote:
Originally Posted by butterflygirlmomof2 View Post
I wasn't sure where to post this (maybe Health forum would have been better?) but does anyone have experience with a loved one diagnosed with congestive heart failure and suddenly needing to be put on oxygen 24/7?

My 75-year old MIL is currently in this situation and we are wondering what this means for her prognosis. I'm worried this means her health is rapidly declining. Or can she bounce back from this and eventually wean off the oxygen? She has not been truthful about her health issues previously (very long and complicated back story) and is clearly living in denial. Her refusal to admit to any problems has driven a huge wedge between herself and her daughter. My husband will be attending her upcoming cardiologist appointment with her but we aren't sure she will allow him to actually speak to the doctor to get an update.

She fell and broke her hip a couple of months ago, while she was in the hospital receiving IV antibiotics for an infection, and is now in a wheelchair. She is obese and has not regained the strength to use her walker and quite frankly, I don't think she ever will. Right before her hip surgery, she did sign over medical power of attorney to my husband. Would this give him rights to speak to her cardiologist? Or do the HIPAA laws supersede POA?

We don't know anyone who has been in this situation, so I thought I'd reach out here to try to gain some insight.

Thank you.
You can read the POA document to know what responsibilities and authorities you have with medical POA, in your state. But generally, medical POA should grant your husband the right to contact doc directly, or be informed. But doc needs to have copy of POA on file. Don’t place POA document in a bank safe deposit box. Kerp it in a safe place in your house, where you can access it quickly in an emergency.

If MIL has the POA, you need to obtain it.
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Old 12-11-2020, 11:46 AM
 
5,152 posts, read 2,198,751 times
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I was hospitalized at age 70 with afib and pleural effusions. My O2 concentration was 87. I was on oxygen 24x7 for a few months. I had an oxygen concentrator unit delivered to the house, mostly paid by medicare. I think it cost me $3.50 a week copay. I got meds for the afib to strengthen my heart and get my pulse down from the 180's to the 60's. My ejection fraction was only 25%, but with the meds got up to 40% (normal is 50%). When I was on oxygen, I used a humidifier attachment to moisten the oxygen. I also kept it on 3-1/2 liters an hour. The humidifier had to be rinsed out and cleaned daily and filled with distilled water (about a cup a day). I came home in a wheel chair and was in it for a couple of weeks. Needed a chair in the tub to bathe, my wife toweled me off while I stood up holding onto a walker. After a couple of weeks I got out of the chair and started using the walker. This is critical because if I stayed in the chair I never would have gotten out. After a couple of months with a walker I graduated to canes, and finally was fully mobile about 6 months after I came home from the hospital. I refused rehab because I knew I could rehab myself at my own pace. When I weaned myself off of oxygen, I first did it during the day, only using it when I felt like I needed it, but I still used it to sleep. After a month or so of using it sparingly during the day I tried to do without it overnight. I was able to do that and stopped using it altogether. I have a couple of fingertip pulse oximeters I use to check my O2 concentration a few times a day. I am 95% or higher so that is good. I've been fully mobile and off oxygen for 4 years now.
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Old 12-11-2020, 12:29 PM
 
Location: Pittston,Pa.
226 posts, read 88,483 times
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Silibran gave you solid advice regarding the medical POA.

Regarding your MIL’s prognosis, I hope she is able to recover.

Your description of her condition is very much like my Mother’s.

My Mom had difficulty walking for a number of years. She was overweight, but not obese.
A knee replacement 10 years ago was a non factor. She had surgery on her C4 spinal disc about 8 years ago which left her with minor balance issues. Over the last couple of years her doctor ran tests and x-rays and the only outcome was that she had arthritis (like we all develop as the years click by). Besides the minor balance problem, there was no underlying medical reason to prevent her from walking. She started out using a cane then graduated to a walker. Finally, about a year ago, she was home-bound and spent most of her time in a power recliner lift chair.

Multiple Physical Therapists were little to no help.
Granted, my mother did not try very hard to exercise and I would get frustrated trying to explain to her that if she did not use her legs they would degrade further.

About a year ago she was diagnosed with congestive heart failure and afib. She had nurses visiting the home. Fluid buildup in her legs got worse and she was hospitalized to be drained. Afterwards, she was transferred to a nursing home for rehab/PT. I visited her everyday and the PT’s were not effective.
Thankfully an increase in her Lasix prescription kept the fluid buildup from becoming a major problem again.

My mother started to decline mentally (frankly I could not blame her because the facility was a very depressing place). She asked me to get her out of there and to never again put her in such a place. Her wish was to die at home when the time arrived. She returned home with oxygen equipment. She would use it at night but never 24/7. Her O2 level would occasionally drop into the high 80’s. After using the o2, or even taking few deep breaths on her own the reading returned to mid 90’s.

She improved for a short time but once again her inability to walk kept her confined to the recliner chair. She refused to sleep in the hospital bed that was placed in the front room even though the visiting nurse constantly encouraged her to do so to elevate her legs above her heart.

The last year of her life she grew more depressed, lost a couple of her remaining close friends who died, which depressed her more and she started to lose the will to live. I was her primary caregiver and tended to her meals, meds, porta potty duties, sponge baths, and adult diaper/clothing changes. It was tough on me as well as her.

Finally, for the last few weeks of her life I has unable to lift/assist her from recliner to potty and thankfully had my sister and BIL to assist me twice a day. It got to the point that she was 100% dead weight and combative to us. Finally we placed her into the hospital bed and tended to her needs the best we could.

We could see her fading away each day and it was very tough. Her last week she refused to eat anything, then even refused to drink. I would drop water into her mouth via a straw.

Mom passed away on September 02, 2020 at 03:30 am.

I wish your MIL, you and your husband the best of luck and hope things work out well.

Death is a part of Life. We will all experience it someday. I am saddened by my Mother’s death but I am glad that she never suffered intense pain and that I was able to fulfill my promise to let her die at home.
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Old 12-11-2020, 12:42 PM
 
469 posts, read 314,260 times
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It's good that your husband is going with her to the cardiologist appointment, and he should go with her from now on. Bring the POA and they will make a copy and put it in her record. Congestive heart failure is not uncommon in older people. Ask her cardiologist for details so you can understand -- is it her aortic valve, her mitral valve, etc. What are her treatment options? In many cases, the patient can get by well with blood pressure medicine and diuretics. If her pleural cavity/lungs are filling up because her heart is pumping less efficiently (causing the breathlessness), this is a bigger issue but not insurmountable. I went through all of it, and like you, was utterly overwhelmed at the beginning. The more you know, the better you'll do. A simple chest xray would show if her pleural cavity has fluid in it.

24/7 oxygen will bring her a lot of relief. In my experience with my mother, it was difficult to get. The cardiologist and internist didn't help; but the pulmonary doctor was extraordinarily helpful once we got to him. Medicare + her UHC supplement covered it. She had the Inogen oxygen concentrator delivered to the home (easy) and I re-ordered the tubing as needed. To reach the shower, I put on a longer lead and turned it up one level. All works great unless the power goes off (it plugs into wall socket). I tried to get some tanks as emergency backup but never was able to. She also had the Inogen portable unit (with battery) for when we went out to the doctors. I bought extra batteries (last about 4 hours each) and kept them charged regularly. She never used the portable at night because the design requires you to suck in through your nose to trigger a pulse of oxygen. The big concentrator is continuous flow oxygen (as are the tanks) which is better.

Right off the bat, I would buy a pulse oximeter on Amazon. Hugely helpful, easy to use, inexpensive. We have the SantaMedical one like this:
https://www.amazon.com/Santamedical-...s%2C258&sr=8-6

You'll need this to gauge how she is doing and which level of oxygen works best. You put it on her finger and press a button and wait for the reading; that's it. I made a chart and kept track of oxygen level and pulse, along with her daily weight (fluid retention is a symptom of congestive heart failure) and less often, I took blood pressure.

My heart goes out to you and your husband as you are thrown into this situation. Ask lots of questions, write things down. There is very little hand-holding in medicine now.

One more thing. If your MIL is going to remain in a wheelchair, the BEST thing I did was buy a lightweight Transport wheelchair and it made life so much easier. I bought the Nova Transport Wheelchair 19" Lightweight in blue. Item 329B. Really easy and fast to fold up and put in the car. I never could have gotten her to the doctor or anywhere without it. I could lift it easily.

I remember thinking, I wish there were a "tips & tricks" guide for all of this. It's incredible to me that all of us have to go through this with our aging parents, trying to figure things out in crisis, reinventing the wheel. Best of luck to you.
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Old 12-11-2020, 02:24 PM
 
436 posts, read 408,188 times
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Butterflygirl--I usually try to educate myself about any new/unfamiliar medical problem. Usually, I wind up on the internet. There is a WEALTH of (mis)information out there!! For example, I did a search for "congestive heart failure" on YouTube and came up with a bunch of videos. Some of these videos are used by doctors trying to explain a procedure, or disease to a patient--start with something simple from a recognized institution---

https://www.youtube.com/results?sear...+heart+failure

Finally, it is important to designate who can be given info about a patient. In my experience a Power of Attorney is not always adequate for HIPAA purposes. Some drs/hospitals are "sticklers" and others "not so much."
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Old 12-11-2020, 02:35 PM
 
Location: Scottsdale, AZ and Redwood City, CA
12,269 posts, read 8,228,507 times
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Quote:
Originally Posted by bobspez View Post
I was hospitalized at age 70 with afib and pleural effusions. My O2 concentration was 87. I was on oxygen 24x7 for a few months. I had an oxygen concentrator unit delivered to the house, mostly paid by medicare. I think it cost me $3.50 a week copay. I got meds for the afib to strengthen my heart and get my pulse down from the 180's to the 60's. My ejection fraction was only 25%, but with the meds got up to 40% (normal is 50%). When I was on oxygen, I used a humidifier attachment to moisten the oxygen. I also kept it on 3-1/2 liters an hour. The humidifier had to be rinsed out and cleaned daily and filled with distilled water (about a cup a day). I came home in a wheel chair and was in it for a couple of weeks. Needed a chair in the tub to bathe, my wife toweled me off while I stood up holding onto a walker. After a couple of weeks I got out of the chair and started using the walker. This is critical because if I stayed in the chair I never would have gotten out. After a couple of months with a walker I graduated to canes, and finally was fully mobile about 6 months after I came home from the hospital. I refused rehab because I knew I could rehab myself at my own pace. When I weaned myself off of oxygen, I first did it during the day, only using it when I felt like I needed it, but I still used it to sleep. After a month or so of using it sparingly during the day I tried to do without it overnight. I was able to do that and stopped using it altogether. I have a couple of fingertip pulse oximeters I use to check my O2 concentration a few times a day. I am 95% or higher so that is good. I've been fully mobile and off oxygen for 4 years now.
Awesome recovery.

Do you think the fact that you still had a spouse was an incentive to get back on your feet and off O2? So many of the women with CHF are widows and there's a certain hopelessness. I saw it happen with my MIL.
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Old 12-11-2020, 03:46 PM
 
184 posts, read 163,237 times
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Silibran - it never occurred to me to check the POA for our ongoing rights, so thank you for that tip. We keep all important papers at home in a fire-proof safe, so I'll be sure to read up. Her appointment is next week and as of now, she claims she will let my husband sit in on the visit. I'll be sure to make a copy of the POA and have him put in her file.

Bobspez - it sounds like you had a great recovery; kudos to you! My MIL just got one of those pulse oximeters and was told to monitor her O2 levels throughout the day.

HenryDavid - I'm so sorry to hear about the loss of your mother. My MIL is a very dear woman and I just want to be able to help her as much as possible. But she is so stubborn sometimes and just refuses to listen to advice. Like your mother, she won't sleep in the hospital bed they had delivered and prefers to sleep in a recliner. This, despite the fact that she is supposed to keep her legs elevated above her heart. Yet she has this fantasy that she'll be able to drive her car again. Never mind that my husband had been called twice previously late at night because she couldn't get herself out of her car. It's quite frustrating and I especially feel bad for my poor husband.

wildflowers27 - yes, a "Tips & Tricks" guide would most certainly be useful! It has been an incredibly stressful 6 months. We hope the visit to the cardiologist will provide more specific information than we are getting from her. I do know she has been on blood pressure medication and diuretics for YEARS. She also has obstructive sleep apnea and is now on a BiPap machine at night. She did allow my husband to sit in on the visit with the pulmonologist and we learned that she stops breathing 38 times an hour when asleep! My husband was stunned, not only at that fact, but that she seemed completely unfazed at this news. Sigh.

Bound2TN – thank you for the links to the videos. I will certainly check them out.

Thank you all. I will keep you updated after the cardiologist visit next week.
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Old 12-11-2020, 06:05 PM
 
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My wife was very supportive. She visited the whole 23 days I was in the hospital. She helped me wash up and change underwear every day rather than have the nurse do it.

Actually it was my pulmonologist who convinced me to try going a night without oxygen. He said maybe in the future I would want to travel and might spend a night in a hotel where there was no oxygen available, so I should try to spend one night without it, just to know that I could. I figured I could always get up and get it if I needed it but once I went the night without it I realized I could sleep OK. I kept the concentrator for about a month after I stopped using it, just to be sure.

I never felt hopeless, even when I got last rites in the hospital. I wasn't afraid, I just did what I was supposed to and took it a day at a time. When my wife wasn't visiting I watched a lot of TV from my bed. I had read a novel about a man who was in a terrible car crash and over time pushed himself to walk again. Although it was fiction, that was my self rehab model.
Quote:
Originally Posted by fluffythewondercat View Post
Awesome recovery.

Do you think the fact that you still had a spouse was an incentive to get back on your feet and off O2? So many of the women with CHF are widows and there's a certain hopelessness. I saw it happen with my MIL.
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Old 12-11-2020, 07:45 PM
 
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Had the heart attack, after 9 weeks in the hospital got heart failure. The IF number was 12%, and used oxygene.
But... I never accepted defeat. Quit smoking, never drink coke or any sweet drinks. Walk a lot, like 5 miles a day. And rehab till corona started.
Think positive, never give up and listen to your doctors. And never complain.

They gave me between 3 and 5 years in may 2015.
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