low oxygen and heart related problems

[sharon]

well just got out of hospital. was very sob when I tried to do anything. low oxygen went to 89 then if I sat down it will slowly climb to 92-93. I had some little pains in chest and was saredI might have been heart problem. they did ekg and said I may have enlarged valve in heart due to low oxygen levels. but according to medicare I do not qualify for oxygen. my level does not drop and stay there long enough. It will climb to 95 but as soon as I move it falls. goes up and down alot. They said I may have a small amount of pneumonia and put me on some azythromycin and predisone. I just got home and have a pcp appt tomorrow , I imagine she will send me to heart doc. this is scaring me . i cant do much without getting sob. I live alone and dont have anyone to help me.
Has anyone had heart trouble befor ,I dont know much about all this and the low oxygen levels are scaring me also. I know my pulm nurse is aware of it but cant do much untill I start hitting 88% for 5 min. maybe I should go in more often so she can monitor it better, but it gets hard to even get in there.
I may have to hire someone to come in and help but dont know if I can afford it. 

[joany]

I'm so sorry. I'm pretty dumb about the workings of Medicare - sometimes I think I know what to expect and then there's a surprise. I lean towards hiring someone. Perhaps your hospital (social services?) can help by giving you some direction. I know help is out there, but unfortunately you have to "dig" for it.

I know that the anxiety you're experiencing worsens breathing problems. Recently I had temporary help at home for two weeks after my hospitalization as I live alone too. I received some information while I was hospitalized in terms of my choices - stopped me from falling apart. Have someone call around for you?

Take care. I so hope you'll get the help you need right away!

[David]

I have severe emphysema but I have a good heart. My overall health is good.

My Pulmonary doctor did a sleep test on me to determine I needed oxygen at night. So I was on oxygen at night for about 6 months before I started oxygen during the day as needed.

The Pulmonary doctor said I didn't need it during the day. He only performed one walk test and I failed according to his nurse. I really didn't fail she just didn't walk me far enough. I was out of breath before I got back to the doctor office but she said the test was over and would not check my oxygen level. I had to stop and rest and she kept saying 'come on it's not far to the room'.

The way I got on oxygen during the day, through Medicare, was my oxygen supplemental company sent a nurse to my house and we walked down the street and back. I was approved.

Ask your supplemental oxygen company if they will send a nurse.

About a year later I finally bought my own oxygen units both the home unit and the portable unit. So I have gotten away from Medicare.

[gerald]

Sharon, I ran into a similar problem getting oxygen covered in Canada. However, my specialist was able to push it through based on a necessity for quality of life. I would expect your should be able to do something similar.

Also the standard for requiring oxygen was that you needed to be able do the 6 min walking test. That if your blood oxygen level did not fall below 88% oxygen was not required. I sounds like your was falling much lower.  When the walking test is done you should be wearing a pulse oxymeter to constantly measure your levels.

If you can afford it, and you can get a prescription, used Oxygen concentrators are available for a reasonable cost. You would need to do your own support but it can be a solution.

[judi]

Yes, it should be based on a 6 minute walk test or overnight oximetry, do they do those in Canada? I was fine on room air at rest for years but still needed it for exercise and sleep and I don't think that is too unusual. I hope you can find a solution.

[gerald]

The 6 min walking test is the standard they are supposed to use. And your oxygen level is supposed to stay about 88 all through the test. They tried to refuse my oxygen because it was not creating a great enough improvement to get it about 88!! My Pulm specialist forced the issue.

However, as long as I had the prescription I could buy the Concentrator, which I did. When I looked there were some reconditioned Stationery Concentrators from US suppliers for around $650.

[sharon]

Thank you for your replies. I went to my primary doc today and got more info about medicare standards. they did a walk till I hit 88 , did not have to be 5 min just till it dropped. which it did after a few minutes. then given oxygen and walked again and stayed at 98. that was all there was to it to qualify for oxygen and so I did. So the pulmonary nurse was not quite right with the medicare thing. I have not been at 98 that I can remember.
she ordered a night test also.
thank you all for your help.

[joany]

You sound so much better, Sharon. I remember from another site(smile) - Breathe In, Breathe Out.

[gerald]

This thread could very closely tie in with the thread "Relief for Swollen Ankles - Expert Answers:".

I have been having to elevate my upper body to breath better while I sleep at night. Finally got to the doctors about it. The doctor does not think that it is a lung issue, but may be a heart issue. The heart is struggle with the COPD and oxygenating the blood and a bi- product appears to be a buildup of fluid in the chest. It turns out heavy exertion which causes severe SOB can also cause the fluid buildup.

The Dr prescribed a strong duretic, 4 hours after taking it my SOB started to clear and my blood oxygen level appears to stablize. This is the second day it has had this affect. Still waiting to see a Cardiac specialist but it is a start to look at the problem.

Anyone else having this issue you may want to talk to your doctor about checking a source or symptom of a problem.

[David]

The way it was with me, with Medicare, was my supplemental oxygen company brought me about 4 cylinders and a thing I put on top of my oxygen concentrator to fill the cylinders myself.

Started out I would pay Medicare about $25 a month. After the first year it went to $58 a month. I used the Medicare for about 3 years. Then this past January they took $100 out of my bank account. February they took out $75 and March they took out the regular $58.

After that I figured I would be better off to buy my own equipment. So March I purchased my own oxygen concentrator and a portable oxygen concentrator.

I did have to get my doctor to write a note that I did not need the Medicare equipment before they would stop taking the money out of my bank account.

I try to keep everything with my Primary Doctor. I use the Pulmonary Doctor to run the Lung Function Tests and CT scans. I also use him to tell where I need to set my oxygen meter.

I rarely see the Pulmonary doctor. He has a Physician Assistant I see 3 times a year. I will see my Pulmonary doctor in October for the 2nd time in 4 years.

[lavishgail]

Wow David Great Idea, I think I'll start there! Ty for this idea. Bc of all the trouble I'm going through. I'm calling my PC and talk to her and also my Rheumatoid Doctor ( Lupus and psoriatic Arthritis ) See what the two have to say. And go from there, after all I've been through. Or I can always just leave it alone, bc he said he will not sign off. Even though he doesn't know me everytime I go there.

[sharon]

David, wow sounds like it would be better to buy your own. that is expensive. who did you go to for concentrator? and do you have supplemental ins with medicare or did you have to deal with them directly? I dont know much about the insurance, I have a supplement ins with medicare. I never understand how it works.

[David]

I had a supplemental insurance with Medicare. It was one of the free ones so I had some out of the pocket expenses. Like co-pay to doctors and so much to the supplemental oxygen company, so much for a CT-scan. Different things like that. The Pharmacy was in that to and I had some low payments and some not so low. Still I put out over $150 a month for medicine.

I turned 65 this year and my Insurance guy said I had one chance to take this particular Insurance. After I turn 65 I would not be able to get it because the first time they can't ask questions. After that they would turn me down because I have existing health problems. The emphysema was to severe for them to accept me. He said I can drop it at any time and go to a lesser Insurance. So I figured why not. They pay for most everything. It came out about the same either way I paid. So I had nothing really to lose.

I pay $184 a month to an AARP United Health Insurance and had to take out a separate Drug plan. I pay $41 a month for that. They pay more on my scripts and I pay less.

I was paying around $175 a month for prescriptions and with doctor copays and such it all comes out about the same. I am happy so far. My disease is getting serious at this point.

I was lucky when I got my home oxygen concentrator. I mention to the nurse where I exercise at the hospital and she said there is one under the desk there and she said I could have it. She had been trying to get rid of it. So I got that for free. I do pay the hospital $30 a month to use there equipment so I can exercise. You can purchase home oxygen concentrator for around $700. Some less than that too. They are not as expensive as the portable.

The portable unit I bought of the Internet from a place in Florida. They sent it by FedX and the shipping was free. I payed $1400 for a used potable oxygen concentrator. Lot's of good deals out there if you shop around and the people are very helpful with helping you decide.

I bought my portable oxygen concentrator from www.1stclassmed.com/

[ozboy]

Basically we are very lucky here with our health care system......if you need oxygen when you leave hospital they supply you with all you need for say a few months free of charge till you see your own pulmo and get reassessed......after that we get to pick what unit best suits our situation and the government pays all the costs..

Likewise with our Prescription medications which costs around $5. per script....and CT Scans, MRI's, X-Rays and Blood Tests etc are all free...so basically unless you want your personal doctor or a private hospital plus quick non essential surgery, there is little point taking up private insurance...

[sharon]

Peter your lucky to not to have to pay for those things. I spend so much for medicare 104 mo. then my medicare suppliment is 149 a mo. my prescriptions are usually 47 apiece for spiriva and advair. gets to dig a hole in my pocket. now they told me I would have to pay 20% for the oxygen.
Thanks David.

[barb7330]

We're about the same here in Ontario. I don't pay anything for my oxygen and I have a large concentrator, a small portable and also a bag to carry cylinders that are provided. I am assessed every year. Also I only pay 6.11 for most scripts and all our blood work, tests, scans are all cover by OHIP...We're very luck here in Ontario to be cover by OHIP.

[jarca]

i am low income so my medicare would pay 80% of my 02 & i couldn't afford the 20% (around 40 bucks i think). the 02 company I am with had a low income assist program....i filled out there application & I don't have to pay the 20% so my 02 is "free" but i do have to pay any deductible each year & usually my 02 is the 1st to get that.
however, they have been great at letting me make payments in the past for the deductible

Sharon; I am so glad you did a "6 minute walk" test. I do one yearly as my LPM has changed as I've progressed.
Sitting in a chair i can keep barely over 90% now, but walking or "activity" i can need as high as 6LPM , which didn't show on the walk test until i had walked for over 4 minutes....well, most the time if i'm walking, i'm walking for over 4 minutes!--I have found if I walk slow & pace myself doing things I can use 5LPM

[jarca]

ps. being SOB isn't always a sign of being low 02---i can get low 02 & not be SOB & vice versa; i can be fine 02 and be super SOB
www.verywell.com/oxygen-saturation-and-shortness-of-breath-in-copd-914653
of course that is one reason to stay physically fit while on 02 & not let it keep you down


(i also have spiriva & can't afford that so get it supplied from the company for no cost due to my income; there are many things that can help us if we are willing to fill out all the paperwork every year, supply financial proof etc. ----heck my "part D" cost went up horrendously last year! seems like the part D's are paying less & less for meds we need   ---seems stupid we pay 104.90 for medicare & then have to pay even more for Part D)