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notBrad

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Hi all,

My tobii only has " tracheostomy" in its auto complete and since I feel very lazy today that is going to be the catch all for anything related to the operation.

So I am looking at getting a tracheostomy and want to try to schedule the optimal time to get it, something early enough to give me the best odds of having minimal issues but still late enough that if it absolutely is a living hell I can call it a night without having wasted time futzing with it that could have been good times.

I have taken to wearing the trilogy twenty four seven and as I expected I soon found that I needed it rather than just wearing it to give myself a break.

First thing was running it by my neurologist, who surprisingly enough didn't like the idea of a tracheostomy. Anyway we talked to ENT Surgeon who also recommended against it. He said that my vocal cords and throat muscles were still working well at clearing my lungs and said it could actually shorten my life by making me more susceptible to pneumonia and other things.

But my RT and several others, some of whom actually have them ( tracheostomy) say they are not that difficult to live with and the claims of complexity, etc... are exaggerated.

I would love to hear opinions and recommendations.

Thanks,
Brad
 

affected

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May I ask Brad are you asking about a trach alone or being put on a ventilator?
 

affected

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Thanks Brad, I hope Diane can answer some of what you have been told.

Did your neuro say why he 'didn't like the idea of a trach'? I hope he had some solid reasons, rather than a personal opinion?

It is such a personal choice and there are so many factors from what I've seen over my few years here. Do you have a really clear living will so that you can feel in control of what will happen in certain events?

I can't obviously give you personal experience, I hope you can get some good food for thought to help you with a huge choice mate.
 

Diane H

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Like Tillie, I wonder about the neurologist being negative about you having the trach. Is your progression rapid? That gives you only a short period of time to benefit from the trach and vent before the ALS takes away the possibility of communication. Or is he just against trachs and ventilators in general? His experience with them would be mainly in the hospital, with patients in crisis, not at home and stable.

The ENT seems to basing his recommendation on your ability to swallow, which has nothing to do with the need for a trach. Good muscles in your throat don't mean your cough is strong enough to get the mucous that far. At the time I was trached and vented, I didn't have swallowing or speech problems. I am still eating and talking, not without some problems, but not quite well. That is certainly not the norm for ALS, but neither is my very, very slow progression.
Anyway, the trach and vent decision is based on Pulmonary status. Needing the Trilogy 24/7 is as sure a sign of borderline breathing as any pulmonary test. That leaves you at risk for severe respiratory distress from a simple cold, respiratory flu bug, much less pneumonia. CoughAssist machines and newer settings available on today's BiPAP/Trilogy machines can keep ALS patients more comfortable longer, but they still can't work beyond a certain point. For most ALS patients, that point comes about the same time as when the ALS has taken all functionally helpful movement, speech, and swallowing.

The risk of infections because of a trach is far less at home, especially because of a limited number of caregivers bringing their cooties to you! The risk of aspiration pneumonia can be very low if you have a feeding tube and are willing to stop trying to eat when it causes coughing in spite of avoiding problem foods.

The problems of living with a trach for someone with otherwise reasonably good health are definitely exaggerated! Today's trachs don't usually require an inner cannula, so trach care is simply washing the area with soap and water once a day. Suctioning doesn't have to be the sterile ritual it once was. A closed suction catheter gives better infection protection by having the catheter in a plastic sleeve. An inline suction catheter does the same but also allows the suction catheter to be left in place. That saves a lot of time but is more expensive. (And is an ugly necktie!) My suctioning is done with a standard, inexpensive suction catheter used for 24 hours before replacing, one non-sterile exam glove, and no sterile water for rinsing through the catheter. Just put the catheter back in its package between uses and empty and rinse the collection canister daily. Yeah, horrified gasps all around! As a retired Intensive Care nurse, I cannot recommend this. As a thirteen year trached and vented person without a history of repeated lung infections, I can "allow" this for stable, reasonably healthy ALS patients who don't have a parade of different caregivers.

I am much happier without the BiPAP mask, and definitely much less stared at in public. I am very portable. "Have suction bag, will travel."

If you feel you are a good candidate for a trach (somewhat slow progression, ability to tolerate the paralysis of ALS, money to afford vent trained caregivers for any time your family or friends cannot cover, do the planning now. (That includes advance directives. Assigning a Medical Power of Attorney is something to consider beyond a Living Will.) Scheduling the trach surgery beats a run to the ER in respiratory distress/failure. But even if you don't feel the need to schedule the surgery now, planning will still make it easier.

A final note. Medicare pays the same amount for a Trilogy used as a BiPAP as it does for a Trilogy used as a full ventilator. Your co-pay won't increase unless you have other insurance that hasn't followed Medicare's lead yet. They will in time because a Trilogy is a great machine but expensive for use as just a BiPAP. In my Medicare district, my co-pay is $179 per month.

This has gotten really long, so you might want to go to my website at ALS From Both Sides for more info on living with a trach and vent.
 

notBrad

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Thanks Tilie and Diane,

I think the neurologists dislike about it is what she thinks is required for maintenance. She said ' out of eight patients with tracheostomy only two are happy with the outcome and they each have six to eight caregivers'. Which tells me that (a) she may hold a ' hospital' view point in which all the complexities and procedures are performed and / or (b) she thinks that home administration is potentially too ramshackle as performed by laymen such as my wife Vicky and care giver Ethan. Fortunately for me Ethan is very good, bright and dedicated to caring for me. As far as the ENT Surgeon, I think he is also concerned with the possibility of finding quality help.

One thing I have noticed is most of the health care professionals here are seemingly terrified of the prospect of a tracheostomy. Why, I don't know but it is definitely palpable. The home health people have said they won't even touch me with a tracheostomy. I seriously mean not even a sponge bath!

As far as the current state of my breathing, it is strange, I prefer to have the bipap and most of the time I seem to need it, but yet I never need it sitting on the toilet (go figure that one Out!) , and there are good and bad days for breathing without the bipap.

I am concerned about my wife Vicky being able to handle it. She claims she can but already has Ethan pulling midnight to noon shifts five days a week because she can't deal with rolling me over five or six times a night. So I seriously doubt her ability to handle potentially a dozen interruptions a night. The problem I have is that I have a really good caretaker who is overloaded by my wife and if he gets burned out she won't last a week.

So that is a serious worry to me. I have visions of something being done half assed and slowly suffocating to death. Now I have a choice of not getting the tracheostomy and riding out the time I have left in a little morphine induced fog - which is becoming more and more appealing.

I had visions of riding it out reading, watching movies and having fun in the various forums I belong to until total paralysis set in and checking out.

Anyway, I appreciate all y'all sitting through this and oh yeah, Diane - I have read and continue to read your site and can't tell you how much I appreciate it and all of the work you've put into it.
 

KimT

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Brad,

I can't offer much except my love and support.

Perhaps Ethan could find someone and train him/her? When Fred's mom was in end-state kidney failure she was bedridden and needed 24/7 care. We found a "team" of $10 an hour "caregivers" that really worked out well. She had home dialysis and they had to learn her machines, meds, etc.
 

notBrad

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Thanks Kim, Yeah, I am going to go ahead and get it. I will hate it if I don't give it a go. Now I am having to deal with where I am going to "rehab", there is nowhere close, and the one place in Portland everyone says to avoid them like the plague. My point is that I can't speak and can't eat or swallow so how much damn rehab could I need?
 

lgelb

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Brad, who's saying you have to be discharged to rehab rather than home? That's not the usual protocol insofar as I'm aware. Of course, you do need a stable care situation at home, but you need that anyway.

You don't need to rush into this, so I'd get the home front sorted before going anywhere.

Best,
Laurie
 

affected

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I also haven't heard PALS talk about going in to rehab, but coming home.

I couldn't agree more - make sure everything at home is in place first. You need more than enough caregivers on board and ready to start as this is a higher level of care than you are at now. It's not that you need highly trained nurses, it's that you need someone very close all the time.

You will see that using baby monitors can help allow you to be 'alone' in a room at times, but pretty much you will need someone around all the time. As you noticed most care providers either don't have staff who work with trachs, or they will only provide nursing staff which may be outside your financial means.

So I would put my energy now into a plan on how to live with the trach, and once that is done you can make your date.
 

notBrad

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Thanks Laurie and Tilie for the follow up answers. I agree with you and and am tackling the home care issue. Thanks again for everything!
 

texastc

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When Tracy got hers, we were discharged to home. The hospital staff trained me up on how to properly handle all situations, ie cleaning the site, changing dressings, suctioning, changing inner cannulas, and emergency procedures. They didn't discharge us until I was comfortable that I was properly prepared.

Home health/hospice provided the supplies for me when we got home. They provided a suction machine as well and I added 2 more, 1 portable and 12v powered for when travelling and another home-ade stronger one because the ones you get from providers don't provide the suctioning power that you become used to at the hospital.

You have the same will as Tracy did...unfathomable will to adapt and live. I admire your intestinal fortitude. I wish you well friend.

tc
 

notBrad

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Thanks TC, I truly appreciate the advice and am seriously flattered and honored that you would mention me in the same sentence as Tracy.

I sincerely wish you the best as well buddy.
 

chally

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Brad, right from the beginning we have traveled this path in parallel journey.
I will be thinking of you often and sending good energy your way.
You are amazing dude!
Love ya
Chally
 

notBrad

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Thanks Chally and right back atcha brother.

The home situation is resolving itself. We're moving next week into a new place. The landlord is putting in wheelchair ramp and jacuzzi for us. There are two women in the neighborhood who are caregivers and they are both interested in helping us, one of them as a volunteer!

Love all y'all,
Brad
 
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