IVAP

[KatyC]

Hello, My respiratory therapist at the ALS Clinic has been really pushing for me to get an IVAP. She stresses that it is important to get one and use it BEFORE I feel it’s needed. Both my PFT were normal, I get another in late Feb. I am not SOB and don’t have any of the morning symptoms she describes. I am currently on a trip to Ecuador and am at 9-10,000 ft with only slight SOB after climbing 3 flights of stairs, like everyone else in my group.
I feel like she is really being aggressive but is just being proactive with me and really cares. She even said that if I committed to using it daily and that she would work to get me a free one as my ins will not cover it even if I did really need it.. So, my question is, are there others here that started using a BiPap or IVAP before they felt they needed it? I have read some studies stating better to start early to preserve diaphragm strength. I have bulbar onset but can still eat and drink normally. My speech is mainly affected though I seem to be most critical of that. My Als neurologist didn't feel I needed it yet but I think the sometimes the RTs really see the day to day and are up to date in research concerning their field. I feel I am lucky that my Als team is very caring.
I would really appreciate anyone’s experiences or opinions.

 

[lgelb]

Starting early is a good thing. In Europe, it's provided at a FVC of 80%. The only catch here is reimbursement. If you can access one for free, all to the good. But I'm not sure what you mean by saying your plan wouldn't cover it even if you needed it? I don't know of any plan that wouldn't.

alsguidance.org/breathing/bipap-and-ventilation

The truth is, we don't know if there is a "too early" point because it's hard to do randomized trials that no one is going to pay for. There is also typically an undersupply of machines. I'm not sure there is such a thing as "too early" in bulbar onset, especially.

But we do know there's a "too late" point, that's not always polite enough to announce itself well in advance, so you do the math. Supply chains are only getting worse so best to have one before you need it, for sure.

Personally, I think every PALS should get a BiPAP with iVAPS functionality reimbursed at dx so as to avoid harmful delays, but of course the same reasons for the delays are the reasons that will not happen.

 

[KatyC]

Thank you so much for your reply. I have kaiser and they do not reimburse much for DME. My RT said they wouldn’t cover when she inquired. My FVC is 98%. I hav a phone appt later in Feb. kaiser covers my meds no problem and I have not needed anything else. But I will change ins in the future. I don’t qualify for Medicare as I retired and started as early. Thanks again for your info

 

[Shoshana]

I'm reasonably certain your ALS dx automatically makes you eligible for Medicare. Mine was approved in a month, after I "retired" (I'm 38).
I have Kaiser medicare, my DME copay is 20%. My doc started pushing a breather machine when my FVC reached 75%. I said no until this last clinic when I was at 55%.

 

[lgelb]

Unfortunately, it requires enough work credits to be eligible for Medicare before age 65 with an ALS dx. My husband, who was born with another condition that kept him from steady payroll work, was not eligible. It is not automatic.

 

[Susan12]

<snipped for clarity; please do not paste unedited AI-generated content>

There are exceptions for younger individuals who become disabled, including those with ALS. You may be eligible for SSDI with fewer work credits if you were diagnosed with ALS before age 31 or 21.

And even if you don't have enough work credits to qualify for SSDI based on the general requirements, you can still potentially qualify for SSDI and Medicare with ALS if you qualify for SSI (based on income).

 

[KatyC]

So, I retired at 57 after slowly cutting my work schedule. I have enough credits but I was told that because I started collecting social security at 62 after voluntarily retiring early I would not qualify because I did not stop work due to ALS. I was dx Dec 4,2023. The social worker told me the way you qualify for Medicare is the fact ALS is considered a disability. I am now 63 1/2. If my stop work and ALS dx were closer together maybe I could appeal it but he didn’t think that was possible now. Because I was living off savings and not much income my health insurance through the exchange was only 2.00/mos and it has paid for my drugs no problem. Now my hub starts Medicare in March so my exchange price increased dramatically. Hopefully I stay relatively healthy till I am 65.

 

[lgelb]

Since you say you had enough work credits, I am not sure you were told correctly about ineligibility for Medicare because you had already retired. I would revisit that with your local Medicare center or your state's SHIP program.

 

[Nikki J]

Was it not enough recent work credits by the time you were disgnosed? That disqualified my sister because she had been a sahm for more than 5 years

 

[KatyC]

I will have to revisit the Medicare us sue with the state. Due to being in radicava, I have already met my max out of pocket.. so that is also to be figured.. I also have to talk to the RT to see what she learned about an IVAP being available . Plus I have a PFT later in Feb.. I doubt it decreased much if at all. Unless that could happen without me knowing. Thanks to all of you for your input in both Medicare and the IVAP.

 

[TFB]

I received a bi-pap in mid-November because I told my doctor at clinic that I feel like it's harder to breathe while laying on my side. (I've been really paranoid about my breathing. I lie in bed over-analyzing my breathing.) It may be due to the extra effort required to turn in bed. My FVC is still in the 80s and my NIF is always excellent, they tell me. My doctor had the RT come back in and run the tests again with me lying on my back. She got a low enough FVC reading to justify a bi-pap to my insurance company. I've been struggling trying to find a mask that fits without leaking and my RT and @lgelb have helped me adjust the bi-pap settings. I don't have SOB, but I'm trying to sleep with it some. I can't really tell if it is helping. I'm also bulbar onset. My initial symptoms were slurred speech and balance issues. I went to clinic on November 1st and my bi-pap was delivered on November 18th so I had no supply chain issues. I'm 64 and still on BCBS insurance that I carried into retirement. My clinic also recommends equipment well before I believe I need it. I'm not eligible for early Medicare because I worked for the DoD for 40 years starting at age 21 and didn't pay into Social Security.