Wednesday, August 28, 2013

A Bit Distracted

I have been very distracted this week, sorry if I don't read or comment on fellow bloggers sites this week. We just found out my 70 year old vibrant mother has been diagnosed with severe sleep Apnea.
This is quite common but not common in terms of as severe as hers.  For the past six months a doctor has been trying to determine why her oxygen level is low and red blood count high.  We already know she has fibromyalgia (like me) and suffers from chronic fatigue and separately, high blood pressure.  After poking and prodding her for months they finally stuck her in the hospital for a night and found out she stopped breathing 88 times.  Her Doctor said based on the severity of the situation she should either have been dead, had convulsions or heart attack by this time, and that is likely why her blood pressure is so high.  Crap on a cracker.  Even crappier is that she cannot purchase a regular CPAP machine which costs anywhere from $500 to $1000  (Constant Positive Airway Pressure - a machine that assists with breathing when a mask is worn over the mouth or nose, primarily used at night) but has to buy a BIPAP machine (neither of which is covered by her healthcare) which costs $5200.  My mother is a senior who is on a very tight pension, primarily because she raised two daughters in Canada when my Father (who is now dead and while alive had almost nothing to do with us) never paid more than $200 in child support total and took off back to the States, was divorced, remarried, then her husband got killed in a car accident.  Unfortunately his life insurance paid nothing as he had had a drink before getting in the vehicle.  She then had to sell their business, get a job of which she had to retire at age 55 with lowered pension due to fibromyalgia.  So yes, I know what it is to be poor, and still suffer continuous crappy financial circumstances.  I lived it as a child. Likely it is why I am so bloody frugal, and pay cash as I go.

She has very limited savings and has been trying to sell her senior mobile home so she can move into her new condo which is now vacant.  This likely will dry up her savings further.

So, I have been calling sleep centers all over BC trying to get a lower price so we can get where she wants to go to match it as there is a lot of followup to go with this.  Why doesn't our so called universal excellent healthcare cover it?  No idea, really, she could die if she doesn't get treatment. I have gotten a lower price by about $1500 but we are trying to determine if the quotes are apples to apples.  We could order from the states but would not have any of the high maintenance service these units require plus checkups to make sure it is working properly. Not a great week - not only am I worried about her health, I am worried about her finances now.

31 comments:

  1. That sucks, I have never heard about that type of machine. Dh has a severe case of sleep apnea and uses the regular machine.

    Sorry I can't offer any advise, if I think of something I'll let you know.

    Gill

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  2. Well, my first instinct was to see if any CPAP machines were listed on Ebay. Nope, darn it. Wow, if they hadn't admitted her to the hospital for a night, you would have never known about her condition. That's pretty scary. Is there any chance she can get in on a study of some kind so she can get the treatment for free? I am confused as to why health insurance doesn't cover it when it could save her life. It doesn't make sense.

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    1. In Canada they require a prescription like pills therefore illegal to sell unless an authorized medical sales dealer. Health insurance only covers non-prescription type stuff ie the doctor visits and the hospital stay here. They class this as a prescription device. No studies in Canada like that, not really many options other than to get the lowest price in BC then hope we can get the local dealer to match it as travel costs off island are high.

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  3. Oh how frustrating for you! I would have thought that insurance would at least cover that in part. I want my husband to go for a sleep study and I suspect he has apnea and that scared me because of his recent heart attack.

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    1. She doesn't have a top up plan and our basic BC Healthcare is good, just doesn't cover anything that is not delivered to her in hospital or Doctors office, therefore as she has to have this at home at night not covered. I suffer chronic fatigue and now am going to ask my Dr the same thing next time I see him.

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  4. It's no wonder you are distracted! That's putting it mildly! Your mother must be a special lady and God must have plans for her as it was such a GOD THING they were able to diagnose her condition at long last. God can make a way when there seems to be no way and I am going to pray that happens for you!
    Love and prayers from Texas!

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  5. I'm praying you find a good deal on that machine.

    Less and less things are covered by our health care system and that sucks!

    It is a terrible situation for people with no money (most of us).

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    1. We were all quite shocked to find out it wasn't covered and then how high the price was. $1000 we could swallow a lot easier than $5000 but since here condition is so severe the unit she needs is very specialized. You are right, less and less things are covered. At least she has a little bit of money, and so do we in an emergency but what do people do who have none? Does she have to go on welfare just to get it? Very Very Stupid

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  6. What a terrible situation to be in but thank goodness her condition has been diagnosed and you can work on getting her sorted out.

    She's lucky to have you to help her! I wish you every success in finding a suitable machine at a good price!

    xx

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    1. We are very thankful they found out what was wrong before she just up and died, so hopefully her health will straighten out now.

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  7. I have a BiPap machine and should be able to find one for WELL UNDER $5200. I have a Phillips Respronics one...I can get the model # for you if you want. It has a separate box that attaches to the unti which holds distilled water for humidifying the air in the tubing.

    These really don't need repair or adjustments.....it does take effort and time to find the right one that will work for the patient and mostly that involves finding the right mask set-up that works for the patient. If they are charging $5K they are selling the personal fitting/adjusting service but are still way overcharging.
    I get mine at no cost through our private insurance(as a rental). I am allowed 1 free gasket for the face mask replacement every month. Beyond that I have to pay for extra gaskets, or sleep liners(not necessary), or to replace tubing, etc. 1 gasket costs $54US sugg. retail but I found them on eBay for less and you shouldn't go through more than 1 mask gasket a month or two. The replacement pieces are a rip off price IMHO.

    You can also rent or buy a used machine. Rentals cost about $100-$200 a month in the states and this place sells used units.... http://www.secondwindcpap.com/

    You CAN do this cheaper than $5K.
    Good luck!

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    1. I have gotten a quote in vancouver on the idential Philips Respironics machine for $3950 but we are trying to find out what her quote included (maskes etc) to make them price match so she can deal locally as going to Vancouver for her checkups with the sleep center are cost prohibitive if more than once or twice.I will keep everyone updated.

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  8. Is there anything like what we have here in Alberta - Aids to Daily Living? I was given my nebulizer for no charge and all I have to pay for is the tubing as it breaks down (about $8). Not sure if they cover CPAP but worth checking to see if B.C. has anything like that.

    Good luck!

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    1. Yeah, we tried that already. They do have that here but not on this type of medical equipment. We have also investigated if there are any low income/senior grants. Nothing yet.

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  9. Oh CC, I am so sorry to hear this about your lovely Mum. Everything was going in such a great direction, wasn't it. I am praying for you all and keeping everything crossed.

    The biggest virtual hug is being sent across the Atlantic and the whole of Canada to you.

    Sft x

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  10. I really don't have any advice for you on this subject, but sounds like some others have some places to start. Best wishes to your Mom for a speedy solution. Hang in there!

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    1. She actually feels pretty good and did so even before they started running the tests, the oxygen thing was identified in a regular blood checkup. Thanks so much.

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  11. I am glad they found out about the apnea! I know your cheapchick sleuthing skills will make this an easier budget problem to overcome. Sorry to hear and good luck!

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    1. Thanks - I found a cheaper price but all the addons like visits and mask make the price almost equal. Still working on it though.

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  12. I'm sorry your suffering at the moment. Things like this make me so grateful for the NHS in the UK. I really truely believe something will turn up for you all though.

    x x x

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    1. Her health is more important than money and the money will be found, no matter what. We are fortunately in a situation to help her if need be so it will all work out in the end. I really hop this fixes her issues though.

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  13. WHEN she gets a machine... try the nose pillows... I could NOT tolerate the masks. I'm 63... been using cpap for 10 years.

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  14. There is also a candle lit here that she will get what she needs. Living in Germany has taught me one thing about when the "authorities" say that something is not possible, then it's time to kick up a stink!

    Maybe I'm just naieve but could you try going to one of the offices in person and trying to speak to someone about an answer as to why the health insurance doesn't cover this clearly lifesaving piece of apparatus and where exactly it says this in her policy that it wouldn't cover it? It helps to speak to a real person face to face sometimes. I wish you all the best of luck !!!

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    1. We are definitely trying all avenues. I think a lot of people don't realize that this type of equipment is not covered - even when it can save your life. A definite hole in the healthcare situation and we are trying to publicize it - we won't take this laying down!

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  15. I'm so sorry. I truly am. It does sound like your Mother has been a fighter in every aspect of her life and I think this is why she is still with you. I know that doesn't help much but try and keep that in mind when the worry creeps back in.
    A prayer and a good vibe.

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    1. Thanks Sonya Ann, she is pretty upbeat surprisingly so we are just trying to get the machine/finance thing sorted.

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  16. I have used a C-Pap machine for over 10 years. I had a very hard time using it the first few years. In fact, I gave up at one point and went to using one of those pillows that look like a wedge and help you sleep almost upright. I'd put pillows on top of it. It wasn't as safe as a machine but better than nothing. Sleeping on your side is also better than sleeping on your back. Maybe should could try those ideas until she gets her machine. My insurance is through the county hospital and they will not help me buy a machine when I need a new one. I have my FIL's old machine but have no idea how to get it reset for my #. I hope you find something helpful soon. I often remind myself that I don't take my next breath unless the Lord ordains it.

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