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CHF due to bacterial infection in lungs. Single mother of twins, 44 yrs old. Just now started receiving disability. Have pulmonary hypertension.

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OP has not returned since her post Feb 7
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gemswinner12 Mar 10, 2020
Seems like WE care more about her situation than she herself. Oh well; we’ll just keep going! Thank You for pointing this out so that we can respond to the active members who need our advice and support!)) it’s gratifying and fulfilling when we know someone is listening, and recognition is nice at least once in a while!))
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What does your Dr say? Does he/she have any suggestions? I would also contact your state representative and US representative Lambert and US Senator Cornyn. make them aware of your plight and ask them for help in finding a solution.
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A nother method of increasing the oxyen content of you blood is to inflate your lungs by taking the deppest breath of air and holding for as long as it is compfortable. Exhale comfortably. This can be repeated as often as it is comfortable.

Another is using a sonic humider with 3% peroxide in your enviornment. I do this closing the bedroom door to increase the local exposuer. The peroxide produces oxygen and water in the lungs. It reduces the coagulation of the mucus in the lungs. The inflation also which also aids the absorption of oxygen in the lungs.

I also use this technecq when exposed to fungus, virsus and backteria. I seems very effictive.
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MACinCT Mar 11, 2020
OMG. The literature on this is to decontaminate a room... not on humans or animals. It is toxic. https://www.ncbi.nlm.nih.gov/m/pubmed/15298493/
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JoAnn mentioned a relative who receives SS disability with Medicare as primary coverage, Medicaid as secondary.
If a young person (she is 44) receives SS disability (not clear what type of disability payments she is receiving, whether SS, state or private,) they are not expected to be able to hold any job. SS assumes they are permanently and totally disabled. LW has congestive heart failure as a secondary result of her pulmonary disease.
It would seem, then, that this LW may qualify for the same Medicare primary insurance. She should contact SS office to check into the availability of Medicare benefits. That would pay for whatever oxygen equipment she needs, plus other care.
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Does TX Medicaid require compensated work? TN allows recipients to "volunteer" their hours. One seriously ill friend volunteered to work the reception desk at the local hospital, looking up patient room numbers and giving out visitor badges. Because she was so visible, she got the help she really needed (including a wavier to the work requirement) a lot quicker than usual.
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Treechick, in terms of working part time, I read some years ago that GoodWill is an employer that accommodates worker's needs, more than regular employers.   Apparently it hires people with various challenges.    That might be an option.
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Treechick, I assume you're seeing  a pulmonary doctor who determined the need for oxygen.   Have you asked that doctor or her/his staff about how to get the oxygen you need?  

I've found the pulmonologist we used to have very knowledgeable staff, including about the DME rules for oxygen use.  

Could you clarify your usage? 

If it's only during the day, that's one situation, but if you need it 24/7, that's a higher level of need, and would be critical not just for your health but your life.   I can't help wondering what other programs there might be.

You've written:
"So my oxygen company wants to come take my POC and my home until and I use it 24 hours a day."   and

"... being on oxygen 24 hours a day is hard to do."

Are you on oxygen 24/7?    I'm not clear on this.   I'm also unclear about the company wanting to remove the device now, or until you use it 24/7, or if you can't let them remove it b/c you need it 24/7.  

I also wonder about the Medicaid situation, why it doesn't apply since you're getting disability.   Have you asked your caseworker WHAT if any exceptions there are to this?

You also state you have a bacterial infection in your lungs, as well as CHF.  Is the infection permanent? 

Have you contacted the local Area on Aging to see what help they can suggest?They might know of some way to get oxygen for you.

The United Fund offers help in a variety of situations; you might contact them.  I believe their all purpose number is 211.  
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Worried cali, she had no insurance. The liquids take an act of God with paperwork if all devices fail forCali, They are the most expensive.
Treechick something sounds wrong that disability knocks out Medicaid. If they take away your oxygen, try this. You already know that your sats drop on room air. Can you make sure that someone can take care of your kids? Go back to the hospital and complain of shortness of breath. They have to admit you because you need oxygen to survive and they should not be able to discharge you. Ask to speak to a social worker and tell your situation. Title 19 is Medicaied for the destitute. The SW should be able to assist you. You do want someone who can look after the kids so that DCF will not put them in foster care. Expect 3 to 5 days to process paperwork. If all else fails I am sure the news media who do consumer issues will be interested.
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worriedinCali Feb 7, 2020
Inogen isn’t the most expensive, I have direct experience with this. The paperwork doesn’t take an act god either, in fact it’s been much better than dealing Lincare. My mother has used Inogen for years without a problem.
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I don't qualify unless I pick up a part time job and being on oxygen 24 hours a day is hard to do.
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I was on SSI for 5 months with Medicaid. Since I received my disability I no longer qualify for Medicaid unless I pick up a part time job and then I can do the buy in medicaid program for 452.00 a month. So I had my POC covered but now I am left with no insurance unless I can pay that huge amount each month that I can't afford because I'm a single mom of twin teenagers.

So all these answers a great but again I dont qualify for insurance. I will for medicare in 2 years.

And POC do cost that much if not more and I can't afford that even if I could pay it out. I have to put 1500 down and thats if my credit is approved.

And my credit score is decreasing because of past medical bills at doctors and hospitals. Which medical does go against your credit.

So my oxygen company wants to come take my POC and my home until and I use it 24 hours a day. I don't know what to do??
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worriedinCali Feb 7, 2020
have you looked in to Inogen? It’s liquid oxygen and the portable concentrator is less then $3k. It’s what my mom uses.
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If you are on 4LPM or more continuously, you may qualify for a liquid oxygen set-up. If so, you will be provided with a large liquid oxygen reservoir to fill your own smaller tanks at home. They aren't as small and light as a POC, but they are considerably less cumbersome than the traditional green tank. They usually are provided by insurance, Medicaid, and Medicare. The liquid reservoir in your home will be filled on a schedule, such as every two weeks, so it must be used sparingly for outings and trips. While you are in the house sitting around, you would use your regular large oxygen concentrator. Ask your MD and/or oxygen provider about your qualification for this alternative (Liquid oxygen set up). I hope this helps; again, it's usually reserved for those who need at least 4LPM continuous oxygen w/ activity (walking or using your own wheelchair or walker), or at rest (sitting down, no exertion).
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Yes, I wondered about the cost. Insurance doesn't seem to cover them unless things have changed. My Mom was given one when she was on Homecare. It was just until her numbers came up. Once she was on meds for graves desease she no longer needed the oxygen. We were given a tank for electric outage.
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worriedinCali Feb 5, 2020
Medicare pays for the rental of home concentrators, it’s considerable durable medical equipment. It’s portable oxygen concentrators that they don’t pay for and what most people are seeking financial assistance for.
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This is a multi-faceted issue. Yes, the commercials on TV make POC's (portable oxygen concentrators) look like a dream-come-true. They make it seem like everyone should get one. The reality is that they are only really effective for patients who need no more than 1-2 LPM of continuous oxygen WITH ACTIVITY. If a patient needs more than this level of oxygen as tested WITH ACTIVITY/EXERTION (walking ), it will not be enough or last long enough for any reasonable excursion or activity. POC's are NOT for use sitting around the house or for sleeping EVER. They don't have enough capacity to cover most patient's oxygen needs for a reasonable length of time to make the device worth the government or insurance paying for it. Most patients who need oxygen on a chronic (long term) basis will tend to need MORE oxygen in about a year or less; so, if you need 2 LPM continuously (not pulsed dose) now, you will probably need 3 LPM in about a year. These devices cost at minimum about $3000.00; with extra batteries and the carrying case, that will be about $3,500. Sometimes, people rent them for trips or special occasions for about $200 per week. Please read and consider all this information carefully; I was a pulmonology RN for five years and unfortunately had explain this over and over again to many hopeful patients calling in to the clinic after they had seen the commercial. The only times I heard about qualifying for the device being paid for were in instances of VA benefits, and not all the time. Kaiser Permanente will never pay for them.
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worriedinCali Feb 4, 2020
Things have changed since you were an RN. Portable concentrators do not cost a minimum of $3k anymore, they have come down in price, they go above 2 liters and contrary to what you think, they actually do allow people
to have an active life. My mother has been on oxygen for years and uses portable concentrators. They work very well. Hers runs for several hours & has multiple batteries as well as a plug for the car. So you are very wrong here.
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Have you checked out title 19 qualifications? It is Medicaid. If you were hospitalized and require oxygen by qualification, you should have asked the social worker. Oxygen is a prescribed drug just like drugs for infection or for CHF. Everyone needs the test to qualify. If you are being treated for your condition, oxygen would be included. So what were your saturation numbers?
If, on the other hand, you are asking about those battery operated machines, no insurance covers those. Those are private pay devices thanks to our Congress limited home devices. They cost 2 to 4000 dollars and break down frequently. With regular insurance, you get a stationary machine and a couple of 15 lb tanks. The reality about needing oxygen is that life sucks. Three medical agencies are trying to address this but it seems to fall on deaf ears. You may want to try your luck on a funding page.
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My nephew is on Social Security Disability. He automatically received Medicare as his primary and Medicaid as his supplimental.
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Unless you are unfortunate enough to be in a state that opted out, you should be eligible for expanded medicaid if your income is low enough.
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I take it you are on Medicaid? If your doctor has prescribed oxygen, Medicaid should pay for it. If you aren’t on Medicaid, try to get on it.
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