What is reasonable?

[4tloml]

How long has it generally taken to hear from anyone after equipment has been ordered by the doctor? What about tests to be scheduled and follow ups to be calendared? How long did it take from a definite ALS diagnosis to your first clinic visit?

Just wondering what is reasonable and what others have experienced before I start calling.

Thanks!

 

[krnNdug]

I was lucky that I got my 1st clinic visit within 2 weeks of diagnosis. As for the wheelchair I was contacted within the week by the DME company and saw someone within another week. It took around 2 months to get the chair itself. All my tests are done at the clinic. I am not sure what tests you are asking about after a definitive diagnosis though. I go to clinic every 3 months which seems pretty standard at all 3 of our clinics in the area. We go to the local ALSA support groups and through them we have gotten a lot of loaner equipment. I would recommend contacting them and also going to the support group, they have been good on so many levels - support, informative and loan closet items, etc. We have developed some good friendships through it as well.

Doug

 

[davbo49]

they try to set you up with the clinic fast as they can. i would call them. for anything else it takes time but stay on them.

 

[gooseberry]

Hearing back from clinic can be instant to 2 weeks depending on whats needed. Everything is triaged. It took us 3 months to get into clinic the first time. My husband goes every 3 months. The coordinators get things ordered by priority. So if someone needs a peg and that is highest priority from clinic, that will be done first. If no real issues but pt is needed as the most serious issue, the pt order is written first. Generally things are done within 2-3 weeks of clinic date.

 

[4tloml]

Thanks so much for sharing your info on this.

We're STILL waiting for the Trilogy and Cough Assist ordered Nov. 6th, and again on Dec. 3rd, and again at husband's first clinic on Jan. 2nd. (That delay is what prompted the question--Wondered if I was being overly optimistic expecting them earlier.) Got a nurse advocate involved and now they're promising them any day. I'll believe it when I see it.

 

[affected]

I for one would think that breathing assistance equipment would be triaged as high priority...

So sorry to hear you are left hanging like this. As a CALS we feel so responsible for being proactive for our PALS, so being let down like this, months not just weeks would be so awful.

 

[starente15]

I have been working on getting breathing equipment and can tell you it hasn't been easy or quick. I was able to get a nebulizer in four days but cough assist and sip and puff is going on two weeks now even with constant follow up. It seems that some of the issue is with Medicare, other is with communication between doctors and respiratory people. You have to stay so on top of these things it isn't funny!

 

[JimInVA]

Our first BiPAP was delivered within a week of our doctor prescribing it. When during a follow-up clinic visit, the doctor decided he wanted to swap out the Resmed for a Trilogy, they called the following day to schedule delivery for the day after that. They do not... or should not... delay when providing these devices. I'd be all over them like a fly on peanut butter...

Jim

 

[4tloml]

Respiratory tech just left (Friday evening at 9 PM--He's had a long day!) and we are now stocked: Trilogy, Cough Assist and suction device. What an ordeal just trying to get people to follow up on things and do their jobs. But that's behind us now and lessons have been learned. I think our nurse advocate has been one of the greatest benefits of our medical plan!

 

[affected]

Fantastic!

 

[gooseberry]

Do you have Aetna? We do and our nurse advocate makes things happen. I call with a list she gets it done. It sounds like perhaps insurance could have been fighting it too

 

[Lilacs53]

I didn't know that the health advocate can do all that. I'll have to give her call when and if I need her.

So glad that you got the breathing equipment...now for the wheelchair.

 

[starente15]

Glad u got it!

 

[Nuts]

4tloml, how is the Trilogy working out?

 

[4tloml]

@Nuts, it's great to have it! He's been on an epap (that's what the RT called it) at night for a year now because of central sleep apnea, but he's been getting so short of breath during the day that they ordered the trilogy for daytime use. And it's nice to have the nasal pillows so he can still read or watch TV. His nighttime unit requires a full mask. It's comfortable, but he just can't see around it.

What's really been great is the cough assist. He uses it several times a day and he can feel the difference. He's had a lot of phlegm for several months he just couldn't get up, but I don't think he's coughed and choked once today. What a difference!