Hello and Question from a Newbie

[Guest guest]

Hi Debby,

I too have bronchiectasis and live in AZ. Also recently found out I have a variant of cystic fibrosis. Am 51 yo.

Was on oxygen recently after surgery and could not get my insurance co to approve the Inogen. My home care provider did let me borrow one so I could attend a special event (concert). I had it for a week and it was great, but couldn't get it for long-term use. Home care company said Medicare absolutely will not approve it.

It would be a great gift to your dad though - and probably do much to lift his spirits. Have you talked to the provider about a "rent-to-own" plan?

Hi ..

Interesting to read you have a variant of cystic fibrosis. Have you ever been tested for Alpha1 Antitrypsin Deficiency? I don't recall if I've asked you this in the past or not..however, A1ATD is also a sister disorder to CF..and what I was born with.

More info about this genetic liver/lung disorder can be obtained at

www.alpha2alpha.net

Sandie in MD

Never look down on SomeoneUnless you're willing to help them UpSee AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

Hello, everyone. My father (now age 77) has suffered from

bronchiectasis since he was a teenager. He had lung surgery during

the 1950s (when I was an infant) and managed relatively well during

most of his adult life. But a month ago he collapsed and was

hospitalized with a bad pseudomonas infection. My mom died a few

years ago, so my brother, sister, and I are trying to learn all we

can about options for Dad. I'm sure I'll learn a lot from all of you.

I have one question to start: My Dad is on oxygen 24/7 and may need

that for the rest of his life. He has a concentrator in his

apartment and portable tanks for when he goes outside. But he would

**really** like to have one of those super-portable units like the

Inogen (the ones that weigh only 10 pounds and can go over your

shoulder). The doctors keep deferring prescribing one of these for

him because they say they have to wait until they know he will be on

oxygen permanently. Although Dad's condition is improving a bit, it

seems likely that he will need the oxygen indefinitely--and a

portable unit would help his life and spirits a lot. He lives in

Arizona, USA, so he could get out and walk more easily this time of

year. As he has said to the doctor, " the best chance for me to

rebuild my lung capacity and get off oxygen is if I walk, and I can

walk better if I have a portable unit. So why wait to prescribe me

that unit? "

Here's my question: Does US Medicare and/or other insurance plans (I

don't know the name of my Dad's secondary insurer, but he's always

had excellent insurance) ever pay for super-portable oxygen units

like Inogen? My suspicion is that the doctor is putting my Dad off

because it's hard to get the insurance companies to pay for these,

it's work for the doctor to write the letter, the company will

probably say no, etc. If that's true, my brother, sister, and I will

pool our resources to buy the unit now for Dad. It's expensive, but

it seems like it would make a big difference to him--and his

insurance is covering almost anything else.

Does anyone have experience with this? I'm just trying to understand

what the options are. If insurance isn't going to cover this anyway,

I'd rather scrape the money together now and give my Dad some better

mobility than wait and battle for six months for no purpose. Thanks,

and I look forward to hearing more from you. Debby (in Ohio, USA)

[Guest guest]

Hi Debby, I too have bronchiectasis and live in AZ. Also recently found out I have a variant of cystic fibrosis. Am 51 yo. Was on oxygen recently after surgery and could not get my insurance co to approve the Inogen. My home care provider did let me borrow one so I could attend a special event (concert). I had it for a week and it was great, but couldn't get it for long-term use. Home care company said Medicare absolutely will not approve it. It would be a great gift to your dad though - and probably do much to lift his spirits. Have you talked to the provider about a "rent-to-own" plan? Deborah Merritt wrote: Hello, everyone. My father (now age 77) has suffered from bronchiectasis since he was a teenager. He had lung surgery during the 1950s (when I was an infant) and managed relatively well during most of his adult life. But a month ago he collapsed and was hospitalized with a bad pseudomonas infection. My mom died a few years ago, so my brother, sister, and I are trying to learn all we can about options for Dad. I'm sure I'll learn a lot from all of you.I have one question to start: My Dad is on oxygen 24/7 and may need that for the rest of his life. He has a concentrator in his apartment and portable tanks for when he goes outside. But he would **really** like to have one of those super-portable units like the Inogen (the ones that weigh only 10

pounds and can go over your shoulder). The doctors keep deferring prescribing one of these for him because they say they have to wait until they know he will be on oxygen permanently. Although Dad's condition is improving a bit, it seems likely that he will need the oxygen indefinitely--and a portable unit would help his life and spirits a lot. He lives in Arizona, USA, so he could get out and walk more easily this time of year. As he has said to the doctor, "the best chance for me to rebuild my lung capacity and get off oxygen is if I walk, and I can walk better if I have a portable unit. So why wait to prescribe me that unit?"Here's my question: Does US Medicare and/or other insurance plans (I don't know the name of my Dad's secondary insurer, but he's always had excellent insurance) ever pay for super-portable oxygen units like Inogen? My suspicion is that the doctor is putting my Dad off because it's

hard to get the insurance companies to pay for these, it's work for the doctor to write the letter, the company will probably say no, etc. If that's true, my brother, sister, and I will pool our resources to buy the unit now for Dad. It's expensive, but it seems like it would make a big difference to him--and his insurance is covering almost anything else. Does anyone have experience with this? I'm just trying to understand what the options are. If insurance isn't going to cover this anyway, I'd rather scrape the money together now and give my Dad some better mobility than wait and battle for six months for no purpose. Thanks, and I look forward to hearing more from you. Debby (in Ohio, USA)

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[Guest guest]

Hi Deborah

Don’t know if this helps at all... google ‘pink disease’, when it’s page comes up, go to left column and click ‘bronchiectasis’ and you will find an article “How to Treat Bronchiectasis” written by several Oz doctors – best info I’ve yet come across. The article will give you good info, a base to ask questions of your GP or specialist.

Re pseudomonas: use google, wiki, your doctors etc etc, any way you can to learn about this infection, ways of managing it. It is the most mucus-productive form of bronch (yuck!) and can quickly build into antibiotic-resistant and debilitating infection cycles. If he has had antibiotics and this is happening he needs to ask his GP to have his sputum tested by pathology for resistance to any of the antibiotics being prescribed.

If you have reservations re use of antibiotics: I resisted the idea for much of my life, and mabye suffered unnecessarily – there are infections which do not respond to garlic and herbs. Being free from infection plays a large part in well-being – ie, ability to breathe, exercise, motivation to exercise ... Ab’s can cause digestive problems though, and a pro-biotic is good, eg SB FlorActiv – yoghurt is really not enough in the context of the antibiotics needed to deal with pseudomonas. Actively question and seek information, be firm with your medical practitioners to provide you with answers and not fob you off,

Wishing your Dad all the best, and a coming year of fulfilment,

Joy

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