Trach timing

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Samkl

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I didn't want to hitch on to Kristina's thread, but this is a similar inquiry. My PALS relative would like to go down the trach/vent route, but is not being encouraged by his clinical team or partner. He is respiratory onset. From Kristina's thread, can I gather that you can go through a venting/traching procedure, which will give the option of hooking up to mechanical ventilation when needed (later in disease progression or at night), cap it when not in use and use the Bipap during the day? The Bipap is meeting his needs at the moment. He is seeing the respirologist to adjust his settings prescription, due to increased CO2 in his blood gas readings, although he is comfortable on the current settings. I don't think they would see many respiratory onset ALS patients, so I wonder if that is impacting everyone's discouragement.
I think constantly of you all in the US, and hope things are better for you than are reported in our media.
 
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Bestfriends14

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I'm not sure where you are located, but they actively discourage traching here in Canada, too; it is considered "barbaric". I cannot speak to what it is like for someone to be trached as I have not known anyone to do so. Just thought I'd let you know that where we are, they discourage it, as well.
 

lgelb

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There are several P/CALS here with trach experience, and I'm sure they'll chime in. But your understanding about capping until you need it, similar to a feeding tube in a way, really, is correct. However, it is a wound that requires care, and complications are possible. Also, as you know, it doesn't stop progression of the disease. I would suggest you search on trach/trache and read the different experiences here. Some have done well, and others have not.

Both culture and budget play in to whether or not/under what circumstances trachs and vents are reimbursed. However, it would be unrealistic to think that no one in Canada, Australia, or really any other large country has chosen that option, if they can pay for it or work out reimbursement.
 

jonico

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Hi Sam,

I concur with Laurie's assessment of factors to consider while making this decision. I'd say the biggest concern would be your PALS friend's partner apparently not being on board with the concept. Your PALS friend will need a serious, committed support person/team, if not quite yet, then most certainly at some point in the future....and possibly for some extended period of time. It'll also be important to understand exactly why his clinical team isn't encouraging.

Obviously, I can't speak for everyone who's gone the trach route, but I am quite certain my wife never once regretted choosing the trach. Please understand, it was very challenging on many levels for that whole extended period of her life, and to be honest I second guessed the decision, as her caregiver, on numerous occasions. But those times were fleeting, and I was happy to have her longer. Now that I am on the other side of it, my memories are far and away much heavier on the thinking-of-that-time-fondly end of the spectrum than on the that-was-a-real hardship end. It was in fact hard - but luckily for us, doable...and from both of our perspectives, worth it.

It's nice that you are concerned enough about your friend to post here. He is fortunate to have you as a friend, and I hope all goes as well as possible regardless your friend's decision...Jon
 

Samkl

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What if financing a trach was not an issue? Does that tip the balance? The desire to spend time with children? Is this something that is routinely denied because of difficulties, even if the patient expressly wishes for it?
 

Nikki J

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Your PALS is in Australia also , yes? How it is handled there will be different. I thought Tillie said it was not an option but perhaps that has changed. If you are very wealthy and can support it privately you can probably do it anywhere but round the clock skilled care is very expensive. People in the US mostly have family care for them for most of the time. It is very hard without at least several committed caregivers and you have said his partner is not onboard

if you are not vent dependent a trach is less work but there still is some as Laurie says and you can progress to fulltime vent without making another conscious choice. And I am worried about the partner issue
 

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What is best for a PALS is highly dependent on the situation and the PALS. The factors include the costs in money as well as the burden on the CALS, along with the condition of the PALS. The cost and apparently even the availability of a trach seems to be highly dependent on the medical/insurance situation where you live.

My pulmonologist asked me to think about whether or not I wanted to consider a trach very early. He was very candid with me and I was always very candid with him. He actively discouraged a trach/vent and he shared his experiences with the many patients he has cared for who opted for a trach.

Despite this information, I have made a decision to eventually have a trach/vent so long as I am still of sound mind and can communicate when the time comes. My pulmonologist has not been shy about letting me know his thoughts, but accepted my decision.

There is no way that I would want to have a trach if I develop FTD. My advanced directive makes this clear, in writing.

Steve
 

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To be honest, being respiratory onset has nothing to do with the reluctance to encourage this. Being vented will not change or slow progression throughout the rest of the body. These discussions are really difficult, and sometimes PALS here in Australia can feel that no one cares about them because PALS are not normally vented here, and the neurologists are unlikely to enter into many discussions on the subject.
I certainly remember the conversation at clinic we had to have with my husband. He had decided he would be vented and it was awful having him accuse them of not caring and of just wanting to make their work easier.

There are a couple of PALS in Australia on vents now. However they are self funded.

The reason it is not really an option here is that it won't be covered by our awesome public funded medical system for free, and if you have insurance you still won't get much back and will have to pay for the ongoing care. NDIS packages now might help some however they will not come close to covering the hundreds of thousands of dollars each year it would take to pay staff to cover 24/7 care for the hours his CALS cannot cover. So yes, it is an option, if the person has the financial means to pay for everything. It is not offered as a routine procedure of any kind and would not be done in a public hospital.

However, there are many things to consider regarding the care of someone who is vented and many of these have already been discussed above. The burden on the CALS and on the family is significant, although if the PALS is wealthy, maybe the physical burden won't be so high as staff may do all the daily care etc. That won't however change the impact on the family of dealing with the emotional side of it all.

Finally, it is really important to also understand that venting is not a guaranteed simple 'fix' of any kind. We have had PALS here who went through a terrible time post procedure and opted to have the vent turned off. We have also had PALS who were only vented a short time and found it was not the outcome they hoped. We also have had members who lived years on a vent they would not have live otherwise, and lived bed bound and at huge personal cost to themselves and family. And the experiences here go all the way through to members who have been vented a long time and lived an enjoyable life with no regrets.

All I am saying here is that this is a huge decision, it is very complex, and no neurologist anywhere in the world should take a PALS towards this without a lot of information and taking time to decide. It is far bigger than simply a financial decision, and the financial side of it is indeed huge.
 
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