Clinic Visit finished, need an option please

[texastracy]

My first clinic day at Tx Neuro is finished. We started at 8:30. It finished at 12:00. We had been warned it would be a long day.

All was good. My inhale breathing is a little low, but good exhale. They offered BiPap, but we want time to think about. We talked about and came up with a few questions.

On question we have is will the benefit be greater if I start now, as opposed to waiting until I have to have it?

Opinions are welcome,

Tracy

 

[FightingAttorney10]

I have had torso onset ALS for 4.5 years, and in my opinion starting breathing assistance early is why I am still here. Granted, I am going to have to vent within a two week period. Honestly, any "ALS SPECIALISTS" offering Bipap is outdated, and it is not the optimal way to manage breathing problems associated with ALS. I am not a regular member here, and some may call me very controversial, but if you want your breathing problems managed properly do not just "rely" on clinic. In my opinion, and based on advice of the best of the best in breathing related issues with ALS, Bipap is outdated and usually should not be utilized. The proper method is using a regular ventilator in volume forced ventilation mode but non invasively with a Bipap apparatus. Very few physicians are trained in this method. If you are having breathing problems early, PM me and I can tell you where you need to go. In any event, starting breathing assistance early in my opinion helps to preserve the diaphragm. There are studies that suggest both modes of thinking, but from personal experience it is a very good idea. When you go back to clinic ask your "ALS SPECIALISTS" why he is not managing you with a trilogy or something similar on volume forced ventilation mode. The only acceptable answer in my opinion should be if they want you to use traditional BIPAP only at night, and even so that is questionable. Also, check out ALSTDI as I am a regular member there, it is not so compassionate as this site, but you will learn a great deal. Best Regards,-Kris

 

[texastracy]

I have been told by several people, including my ALS specialist that a Trilogy system is the way to go. Bipap is a word that does double duty. It is the brand name of a product and also the name of the ventilation process. I appreciate your imput. Good luck with the switch to ventilation.

 

[ottawa girl]

Tracey,

My pulmo also suggested i do breath stacking. Let me know if you need more info. It has helped me particularly with increasing my ability to spit up phlegm.

 

[texastracy]

I got 2 sets of tongue exercises and a breathing exercises. My tongue and throat have decide to be spastic, not loose. So they are focusing on ways to loosen the tongue when it tightens up and how to handle the spasms in my throat I've been having.

Those are they scary part. Last about 30 to 60 seconds which feel like a lifetime. Enough stress to set off the adrenaline, which then results in reaction shakes. I've had four, two at night and two during the day. The daytime ones were at school.

A routine has been established. The school has a response team, which we have had in plans for many years the all carry communication radios. I have a red card on my Id tag, which I show a kid. he gets a teacher from across the hall, she uses the radio to call the team. She also reminds me to lean my head back, draw in short breaths, try to sniff deeply. The kids know to sit down and put their heads down. The team comes in,covers my class, and pulls me out of the class so I can rest for 15 minutes or so, if needed. This causes the throat muscles to relax. The respiratory therapist loved our plan and gave a few more helpful hints.

The admin at our school are wonderful and will work with me in any way. They helped notify my parents about what is going on, gave them enough information and the option to move their kids to another classroom. Not one parent did. In fact, they joined the groups that bring us food every other week.

You know the village that raises the child? They also take care of the adults in the village.

Tracy

 

[dalvin]

the reason they gave me for a bipap at night is so your diaphram doesnt have to work as hard, therefore you can get a better nights sleep, in theory at least. it does take a little bit of getting used to though.

 

[vickim]

That is wonderful Tracy that you have a wonderful work place and a lot of support.

 

[Barbie]

Tracey, that is beautiful! what a wonderful village you live in!

those children in your class are learning a great lesson that they will carry the rest of their lives.

 

[hjlindley]

Look into the Triology. Breathing is usually worse lying down so maybe just at night. I only have trouble at night and that causes me headaches. Good luck

 

[texastracy]

So far I'm not having headaches or struggle to breathe. I do get out of breath if I walk long distances. But I can catch it back when I sit and breathe a bit.

 

[lgelb]

W/ air hunger, SoB eps, I would begin BiPAP. I would also keep a small, cheap "vanilla" machine in your classroom, ready to go, in case you need a new plan on the fly.

Flavors available are: "vanilla" (fixed pressure support IPAP/EPAP), variable pressure support (VPAP or BiPAP Auto, with or without "ST" which signifies the ability to have a backup rate), "volume support" (AVAPS or iVAPS-enabled BiPAP, which also fall under the NIV category, same as Trilogy/Stellar) and other NIVs (Trilogy/Stellar/others) that can also be used invasively (with a trach). Choice will reflect other conditions, payor, settings in which used, own vs. rent, etc.

If you have other lung issues, for example, I would consider VPAP, and under any scenario beware overzealous volume control since you are probably far from hypercapnic as yet. There are some good papers suggesting that synchrony between ALS pts and their machines is often suboptimal under the current protocols, meaning none of these should be set & forget.

 

[mysticunicorn66]

I also hear of people getting a surgery to implant leads for a diaphragm pacing system. Granted it is invasive, but also an option to look into as well. Not sure what the qualifications are for the surgery, but know of some PALS who have had this done.

 

[texastracy]

Yesterday I called Tx Neuro and asked about my FVC level, since I was told it was a little bit low. It was 73%. So we visited about the pros and cons of starting Trilogy system now or later. I opted to start now. They are going to get a company in my town to get me one. Thay are also going to get me a local pulmonologist. At this point I want everything that will help extend my life in hopes of greeting a future generation. i've read about diaphragm pacing an am very interested.

 

[ottawa girl]

Great decision! Conserving energy will also help.

Still hoping for DP too - Everyone I know is doing well with the pacer.