What to do regarding critical medical equipment follow-up (CPAP supplies)

[quadvet]

Yet another night of no sleep, damn near delirious. Please help me problem solve, I'm not sure what to do at this point. I started CPAP therapy this past September, at my VA SCI center. We weren't able to find a mask that wouldn't leak before my discharge. I was told a "special" mask would be ordered and shipped to me that "should" fix that problem. I've yet to receive it. Over the months, I've talked about it some with my PCP at the VA, but more with Respiratory Therapy. It's always "should be on the way"; they even gave me the VA purchasing agent's number to confirm its order. I contacted the purchasing agent today and was told the particular mask ordered is no longer available through the vendor it was ordered from. I was told to contact Respiratory Therapy and ask what to do. The CPAP RT wasn't available today, so I left a message. I have been proactive as I know how to be throughout this.

So what can I do, or should I have done differently to expedite this? When RT returns my call, hopefully soon, what can I do to impress upon them the urgency of the matter?

During this time, I have tried several masks from my local DME without success. They do not carry the particular mask VA RT wanted to order for me. I found a sleep doctor locally and saw him once prior to the holidays. He returned just today from holiday travels, so I'll try to contact him tomorrow. I called my DME again today and hope to try yet a different mask in their arsenal tomorrow. In the meantime, this sucks! :mad:

[fishin'guy]

Hey buddy, remind them that this IS a life or death deal here. You have a cpap because YOU STOP BREATHING!! It may be a small thing on their schedule, but you can't sleep without it.
Sounds like you are on top of it tho. Keep pressing. I was fortunate, first mask we tried worked. I just have to prop a pillow up and make it set just right over my nose. I'm on a bi-pap now. Was easy to get used to for me, I was so exhausted all the time, I had to catch up on 2 years lost sleep. Good Luck, I hope you find releif soon.

[SCI-Nurse]

1. Call the patient representative (or patient advocate) at the VA medical center that is providing you this service. Ask them to get this resolved for you, and ask that they get back to you on the resolution in no more than 48 hours.

2. Call your PVA NSO and ask them to advocate for you. I assume you have already signed the appropriate POA for them to act as your agent with the VA.

(KLD)

[Danine]

I don't have advice on how to get the equipment sooner as I am not familiar with the VA system. Just BE CAREFUL until you get what you need...avoid taking muscle relaxers and sleeping pills, or anything else that might cause your body not to be able to wake up when you stop breathing! I'm sure you know this, but you need to be able to wake up so that you can resume breathing. I know it's exhausting...been there... believe me. Also, avoid falling asleep on your back. If you can sleep on your side or stomach, this may be a bit safer. Good luck!

[Emi2]

If the VA is anything like Workers Comp here in Canada <-- a real PITA beauracracy but thank god I have their insurance lol. The best thing I've found is phone every hour, esp. before they open and in the lunch hour (so they get your message). Eventually they will get so sick of you they will deal with the issue. If you can find out the person who really makes the decision, not the case manager, and call them directly. For example, the nurse advisor at workers comp is really nice and helpful and always gets right back to me. same with the finance care plan people. Also make friends with the assistant/secretary.

[Veteran Advisor]

Yet another night of no sleep, damn near delirious. Please help me problem solve, I'm not sure what to do at this point. I started CPAP therapy this past September, at my VA SCI center. We weren't able to find a mask that wouldn't leak before my discharge. I was told a "special" mask would be ordered and shipped to me that "should" fix that problem. I've yet to receive it. Over the months, I've talked about it some with my PCP at the VA, but more with Respiratory Therapy. It's always "should be on the way"; they even gave me the VA purchasing agent's number to confirm its order. I contacted the purchasing agent today and was told the particular mask ordered is no longer available through the vendor it was ordered from. I was told to contact Respiratory Therapy and ask what to do. The CPAP RT wasn't available today, so I left a message. I have been proactive as I know how to be throughout this.

So what can I do, or should I have done differently to expedite this? When RT returns my call, hopefully soon, what can I do to impress upon them the urgency of the matter?

During this time, I have tried several masks from my local DME without success. They do not carry the particular mask VA RT wanted to order for me. I found a sleep doctor locally and saw him once prior to the holidays. He returned just today from holiday travels, so I'll try to contact him tomorrow. I called my DME again today and hope to try yet a different mask in their arsenal tomorrow. In the meantime, this sucks! :mad:

QV,

Sorry you're having to endure this circumstance. Based on what you've said here, it sounds like you were approved for the special mask and this is simply a logistics matter as opposed to a clinical one. As such, you're best avenue may be to check with the Prosthetics Office in your medical center. I normally ask SCI patients to let the bureaucratic ordering process run its course, but your case has risen to "inexcusable," based on what you've said here. That office ought to be able to tell you if everything was done correctly on your therapist/physician's end and where the hang-up exists. The next step would be to get your Veteran Integrated Systems Network (VISN) Director involved if Prosthetics can't help you. However, you should exhaust the route SCI-Nurse suggested before going above anyone's head.

Here's a link to your VISN http://www2.va.gov/directory/guide/facility.asp?ID=1020&dnum=All

[quadvet]

Thanks everyone, I appreciate the help and advice. Emily, your babies are darling!

Veteran Adviser, when I called the "purchasing agent" RT told me to, I got a person in the Prosthetics Department. That's the person who said RT needs to find either a different vendor for the mask, or suitable substitute. I left a message Monday, knowing the CPAP RT doesn't work that day, and hoped for a return call yesterday, Tuesday. I'll try again today. He's a super nice guy and I don't think anyone is being malicious, I'm just falling through the cracks. If I don't hear from him today, I guess I'll take the advice of SCI-Nurse KLD.

On a side note, KLD and Veteran Adviser; I take issue with the way my VA SCI Center has handled my sleep apnea; from my having to hear about it from peers, to the actual sleep study, and now this situation nearly 3 months following. Is there something I can do to prevent another veteran from going through this? Thanks for any input.

[Veteran Advisor]

I take issue with the way my VA SCI Center has handled my sleep apnea; from my having to hear about it from peers, to the actual sleep study, and now this situation nearly 3 months following. Is there something I can do to prevent another veteran from going through this? Thanks for any input.

Every year, PVA does site visits at VA SCI Centers around the country. You can try and get this issue on the site visit agenda by contacting the local PVA Chapter and speaking with one of the hospital liaisons. Here's a link to the chapter's on-line issue form:
http://www.oregonpva.org/VAIssueReport.htm

Or you can e-mail them at hospital.liaison@oregonpva.org. Make sure you submit an accurate, complete, and detailed account of what happened so that facts and events can be verified by whomever handles your issue.

This may not completely resolve your particular issue given how much has already happened, but it may fix things for the next gal/guy who faces these same circumstances.

[wazabiker]

Quadvet, I too had problems with my first two CPAP masks. Finally settled on "nose pillows" rather than a mask. It's been a tremendous success using them. Get a set from your CPAP RT while waiting for your customized mask.