Fvc

[mpnatx]

I went to the Pulmonalogist today and had a breathing test done. He told me my fvc was 62%. I'm not sure if this is normal, above or below average. I don't remember what it was at my last clinic visit in March.
He did say my diaphragm is a little weaker, ordered a blood test and another overnight oxymetry test.
Marty

 

[Nikki J]

That is a percentage of predicted for your age and size. So I am afraid it is low. There are people with MUCH lower values so do not panic. What happened with your bipap? Were you tested lying down too?
Are you going to do a feeding tube with or without DPS? Around 50 is when those things should happen. Did they do full tests or just the handheld?

 

[mpnatx]

I was tested sitting in a chair with a tube in my mouth. Blue Cross turned down the bipap. The Dr said this is the first time in his career that he has seen an insurance company refuse a bipap for an ALS patient. I am in the process of trying to rent one, but the red tape is slowing the process.
I'm not sure about the feeding tube and dps yet. I'll cross that bridge when I get there. ALS sucks!

 

[gooseberry]

If you appeal the decision, you will often have someone in e specialty review the appeal as opposed to a.paper pusher. Its worth a try. Also, I would call your benefits hotline and see what the criteria are for getting one

 

[Vincent]

Blue Cross may just be waiting for you to reach 50% before paying for bipap. The government pays 100% here in Ontario, but are fairly strict with the
50% thing. Actually they send me $105 every three months to pay for masks/ filters and such.
Vincent

 

[bigmark1954]

I was tested sitting in a chair with a tube in my mouth. Blue Cross turned down the bipap. The Dr said this is the first time in his career that he has seen an insurance company refuse a bipap for an ALS patient. I am in the process of trying to rent one, but the red tape is slowing the process.
I'm not sure about the feeding tube and dps yet. I'll cross that bridge when I get there. ALS sucks!

Marty.....Blue Cross SUCKS. It took 4 months for those bastids to ok my Bipap. My clinic Docs said they had never heard of an ALS patient being turned down for it. Dr. Gibson even called Blue Cross twice on my behalf. My headaches continued to get worse and a follow up visit with my pulmonologist finally got results. She pulled arterial blood and my CO2 was elevated. She also ordered a oximeter overnight test. My blood O2 levels were dipping down to 80% at some points during the night.
She proved to Blue Cross that I needed the bipap. Their position was just because you have ALS doesn't automatically make it so they have to cover what you need.
I am currently bleeding 2 liters of oxygen into my Bipap tube at night and am staying consistently above 90% on my O2 level at night.
Hope this helps Marty.......it has been a battle for everything with Blue Cross for me!

 

[affected]

Another reason why they need to test lying down - this is when the numbers really drop.

DPS needs you to have a response from the phrenic nerve that supplies the diaphragm, so waiting too long may mean you also miss out on that too.

Sorry it's so tough, I hate this monster

 

[tripete]

I have said it before but I do not understand why they do not test everyone laying down (prone) it take just a few minutes and tells the true tale. I now insist on it at every appointment. Take control we are not helpless sheep or lab mice. Push for what you need. It is not right that we are dying and have to fight these fights but if we don't know one will. Sorry, my anger is at the system not you.

I meet with the surgeon Friday to decide on DPS and PEG.

 

[affected]

I have said it before but I do not understand why they do not test everyone laying down (prone) it take just a few minutes and tells the true tale.

Ditto that!

Let us know how you go with that appointment Pete

 

[lgelb]

I think as to proneness, they forget that it does not require a transfer -- just tilt/recline the wheelchair.