Bipap.....for my pap. Advice?

[Raul_Chicago]

OK, here is my situation. My dad is in the process of an initial diagnosis for ALS. We are still awaiting bloodwork and MRI results, EMG is done. His neuro seems pretty convinced for ALS, but has yet to get us any breathing assistance. My dad spends a lot of time both worrying about his breathing and a lot of energy trying to breathe. When he lays on his back it is very difficult for him. This combined with the shock and depression makes him look like a ghost. What can I do to get this neurologist to just get us the bipap or whatever without waiting for all of these results? Anyone have any advice or any experience or tips and tricks that I can pass along. I left a semi-urgent message with the Neuro this morning. His next follow up is on 8/30 and the 2nd opinion from an ALS Specialist is scheduled for 9/2 at Northwestern Hospital. I just want to know I am doing the right thing and I really want to get this bipap situation sorted out.

Thank you all!

Raul

 

[abbas child]

Raul, have his primary doctor refer him to a Pulmonologist. He/she is the "breathing specialist" who'd be ordering the Bi-pap after doing some testing. Don't wait for a Neurologist to see him...

 

[lynster]

I agree - 100% - make it as soon as you can. He needs a sleep study.

 

[Raul_Chicago]

Thank you! He had a sleep study last Wednesday, and it was the Neurologist that ordered it. I don't believe he has had a FVC (?), though his PCP did have him get a Pulmonary Function Test a couple weeks ago, and supposedly it was ok. He had a swallow test today and they said there is no blockage and an MRI on the cervical spine. I am awaiting a call back from the Neuro's nurse regarding the breathing assistance. Fingers crossed.

 

[John1]

Hi Raul,

A pulmonary function test normally includes a test for FVC (Forced Vital Capacity). It is measured in percent of expected or normal lung capacity. I believe normal is 100% and FVC can actually exceed that if it is higher than normal. It is the most common gauge that pulmonologists and neurologists use to ascertain whether it is time to intervene in the normal breathing process by the use of Bi-Pap or ventilation. That said, some people appear to breathe OK at 50% FVC and others require bi pap when their FVC reaches the 80's. Here's a link to the forum where it is discussed quite fully.
What was your FVC when you went on BIPAP [Archive] - ALS Support Group

 

[lgelb]

Raul, get a copy of the sleep test report. If it shows significant apnea (as measured by the AHI), the FVC (which would have been included in the PFT, so I would get that report too) is pretty irrelevant in terms of proceeding to PAP. And the pulmonologist or his primary care doc can write the script for that. The rx for BiPAP does not have to say ALS at all. When the payor (Medicare?) checks to see that he meets the criteria for the machine, they will look at the sleep study.

Or, as I often suggest, forget about going through DME unless you have to and just buy a machine/humidifer/mask on the Net -- likely cheaper, quicker and more flexible.

Meanwhile, to help his breathing, I would try to have him lying/sleeping on his side more, using pillows and/or a wedge to be more comfortable (possibly elevating his upper body, if that works), and when he doesn't need to be in bed, keeping him comfortable on the couch or recliner with body pillows, reading pillows, positioning wedges -- whatever works best for him. Flat on his back in bed is probably the least preferred position.

--Laurie

 

[Raul_Chicago]

Thank u all for sharing. We got the diagnosis today. All ancillary tests came in, and it is ALS (it was never a doubt). the neuro is going to review the sleep study and make his recommendations. A 2nd opinion appointment is set for 9/2 at Northwestern University.

Raul

 

[Raul_Chicago]

Update:
We finally have received the orders for a Resmed VPAP Adapt SV. Hopefully we will have it within the next week, the vendor had to order it. Dad had his 2nd sleep study with the mask and did pretty well, he felt good the morning after, since his lungs got to work good for a change. Still dealing with the depression and anxiety, but I am sure this machine will help a lot.

Oh, and we had the initial 2nd opinion appointment with an ALS Specialist at Northwestern University. We are going thru a lot of tests again, but this clinic seems to have a lot of resources. 2nd EMG was today.

Thanks again

Raul

 

[abbas child]

Raul, your dad's improvement from one good night with the machine is really good news. It's a good update, and sounds as though you'll be getting things moving now with help for him. I'm really glad for you all.