questions on progression and trilogy settings

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scaredwifetx

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CALS
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Hello, I am actually posting questions that Steve is directing me to ask.

He is concerned because no one has medically (other than Laurie's help} told him what settings he should have on the Trilogy and if these settings need to change as his breathing capacity is changing. He is now using the Trilogy a lot during the day.

I guess one question would be, should a respiratory therapist be the one who tells him what settings to have? Should he just be adjusting the settings by himself? We are very uneducated as far as the trilogy is concerned. He is concerned because his breathing is getting worse and with over a year on it...no one has ever helped him set it up other than Laurie when we asked here.

The equipment company only comes out to get his data and does nothing. Who is the data going to and shouldn't it be used to keep up with setting change?

He also needs to get a heated hose and humidifier which is not on his current set up.
 
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Deb, if you/he can answer the question list posted on my profile, I can help you again w/ settings. The short answer to your 2nd question is yes, in theory, but the data are kind of a rear view mirror and most RTs are not up on ALS; even the ones who are can't be there with you as things can change fast and/or temporarily (like during a coughing episode), which is why everyone should be able to adjust settings on their own. Yes, everyone should have heated humidification! Call the co. and get it.
 
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Hi scaredwifetx and Steve,

I am on the trilogy and the settings needed to be changed from time to time as my pulmonary functions values decreased and I develop worsening symptoms of shortness of breath and headaches while on the trilogy. The settings were changed based on the recommendations of my pulmonologist working with my respiratory therapist. In time I learn to adjust the settings on my own since am well-versed in pulmonary function, which I learn while practicing medicine.
If Steve has noticed that he is uncomfortable while on the trilogy due to shortness of breath, headaches, or any signs of CO2 accumulation then adjustments do need to be considered . The best approach, would be to discuss worsening respiratory symptoms with the pulmonologist. Alternatively, a sophisticated and knowledgeable respiratory therapist who is familiar with ALS may be able to adjust settings appropriately. You can also monitor Steve's pulmonary function indirectly with a pulse oximeter, which is a small device placed on one finger to measure oxygen saturation level which should be 95% or greater. If it is below 95% and you are likely to need an adjustment. If you visit your pulmonologist office they can also measure Steve’s expired CO2 level to determine if he is retaining CO2 above normal levels.
With ALS, pulmonary functions usually decrease over time because of a weakening of the diaphragm and/or stiffening of the lungs (loss of pulmonary compliance). As a result, either BiPAP pressures will need to be increased or if you are on AVAPS , the tidal volume setting may need to be increased. If the oxygen level is low, the end expiratory pressure setting may also need to be increased. I would recommend making appointment with your ALS center’s pulmonologist now to discuss these matters. If your respiratory therapist is familiar with ALS then an appointment with him or her every few months would be a good idea.
However, if Steve is comfortable on the trilogy even though he is using it more often then changes in settings are probably not necessary at this time. Nevertheless, I think it would be a good idea to visit your ALS center’s pulmonologist for a review. To a large extent, setting adjustments are empirical based on how the patient feels.

Best wishes

Eliot
 
Thank you Eliot and Laurie. We ordered a pulse oximeter this morning so we could start monitoring. Everything you both say makes sense and Steve understood it all. We were thinking if he was comfortable on it then the settings do not need to be changed. Steve admitted that he was hoping having the ultimate settings would somehow help him to not progress. Part of the reason I want to monitor his pulmonary function. He has been acting different lately.

We called the equipment company and requested the heated humidification unit. They had no clue what Steve was talking about. Said they would call him back and never did. We have clinic in a couple of weeks so will address it then.

Once again, Thank you!
 
We took ours to clinic w/us...they would check it there too, as well as at the local pulmonologist. Ours had a heated humidifier from the get-go...can believe ya'lls don't. That seems weird. Hosing had a water trap...make a lot of water in the night. Definitely, the folks at clinic should help. If ya need me to call em up and get it all straight...keep them on the up and up...I will!!
 
The company that provided our trilogy had a respiratory therapist who could be reached 24/7.

Whenever Bob felt uncomfortable with the settings, she would come the same day and work with him until he was comfortable.

Hugs
Joan
 
haha...thanks tc. You made me laugh.

We talked about taking the trilogy to clinic today. Our equipment company doesn't know what they are doing at all and is not the normal equipment company that the clinic refers. We had my insurance at the time. Now Steve is on Medicare so if we need to change to get the humidifier we will. We plan on addressing all of this at clinic on the 20th.
 
no charge for the smiles.
 
Hi Laurie or anyone who can maybe answer this question. We are going around and around with our Trilogy provider. After several attempts to get someone to call us back...I was finally able to speak to someone. Steve really needs a heated hose. He does have the humidifier but is still getting water in his mask. The equipment company has not heard of the heated hose and state they will need to order one. Yet they don't know what they need to order.

He has the Trilogy 100. I cant seem to find anything on the net for the heated hose. Would anyone here happen to have one or know what it is that needs to be ordered?
 
Hi Deb

The Fisher Peykel MR 410 is a humidifier with an integrated hose that contains a heated wire to prevent condensation. I use this model with my trilogy 100 and there is no condensation or other problems with the air arriving in my mask and it is always warm. Your provider should be able to get this for you since it and similar models are readily available in the United States. The following website describes the humidifier. https://www.fphcare.com/homecare/sleep-apnea/cpap-devices/mr810/


Best wishes

Eliot
 
This, I believe, if you already have their humidifier. 1073227 NOTES: Adult Passive Circuit, Heated Wire (Box of 10). I'd have them double-check w/ their distributor.
 
Laurie, our humidifier that they brought is a very small and cheap model. It Fisher and Pakel hc150. Will that one work with the 1073227? What I think is that he needs a different humidifier that has the set up for the heated wire. Maybe the system one?
 
Deb the one we have is the same brand you have but a MR410. I don't know what the difference is though.
 
Soonerwife, you have a much better heated humidifier. The one our equipment company brought us, you can buy online for under 40.00.
I am really ticked today. I spent several hours at work trying to get somewhere with Healthline.

We do not have a pulmonologist and I didn't even know we are supposed to. I thought all of that was covered with Texas Neurology. I am now wondering just what anyone is doing to keep up with his breathing progression and the settings. Shouldn't his clinic/doctor be taking care of this? Steve is at home all day and can still talk and use his cell. After some stressed out conversation with me...he has promised to call his doctor tomorrow.

Seriously, it feels like its me... with the only help coming from everyone here... taking on the total responsibility for his care. Do you know how much they charge Medicare for that Trilogy? Yet we have no help with settings or issues. We even went out and bought our own masks.

If you are in Texas don't use Healthline.
 
Hi Deb, we get a "Medicare Summary Notice" every 3 months listing all the medical costs they paid for. The respiritory supply company equipment and supplies are under Medicare Part B. I looked at a couple of them and Medicare is paying 80% of the trilogy rental which for some strange reason has been anywhere between $1,000 and $1,500 per month. Job's supplemental insurance is paying the remaining 20%. In addition to the two trilogys we have, Medicare is paying either the rental of or purchase of : cough assist machine, oxygen concentrator, oxygen compressor to fill oxygen tanks, 2 suction machines, oxygen tanks, and a long list of monthly supplies...enough of most items to change tubing, filters, canisters, etc weekly.

I hate to say it but I have found that ultimately it all has landed on my shoulders to figure out what he needs and how to get it. We had a nationally known pulmonologist who diagnosed him, taught at a top medical school, even wrote text books on respiritory but couldn't advise us on how to to keep his respiritory optimized....trilogy settings, meds that might help, etc. I would start by trying to find a pulmonologist who is familiar with neuromuscular respiritory issues and is experienced with digging into the" details". We found ours in the the local hospitals ICU when Job was admitted for pneumonia 2 weeks out of rehab. He immediately changed his settings and gave a lot of other helpful advise, saying that he found" neuromuscular " people needed settings outside of the normal guidelines.

Cheering you on and feeling for you, Kate
 
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