Decision about tracheostomy

[Alex123]

I am in that tough situation that I guess most of us with ALS reach at some point.
Recently I went to the ALS clinic and they told me that I needed to decide quickly if I wanted a trach or not.
They told me that if I waited and didn't have an advanced directive, I might end up having the trach done during an emergency which would not be a good alternative. On the other hand, they said that the average survival after the trach is 4 months and that I could die during the procedure, which is done under general anesthesia. They also said that there would be an increased chance of pneumonia as the air is not filtered by the nose. I wonder if this information is correct or there are some things that are not.
I have read both about people who have suffered a lot going through the operation and who felt they couldn't continue like that, while I have also read about some who have been on a trach for many years and have been able to somehow enjoy life. So this seems to depend a lot on each case.
In my case, I have bulbar onset, I am on a Peg, I have abundant thick secretions that are quite anoying and now have a dropped head and my hands and arms are very weak. I have been using a BiPap intermitently. Usually for one hour at a time. Some nights I have used it for up to 4 hours. My respiratory muscles are weak and I breath faster after any simple motion like going to the bathroom, but when I went to the clinic they could not complete my lung function test mainly due to my secretions. I suspect I may have had secretions inside my lungs too. They may have gotten a number or two which may not have represented the real condition of my lungs. I don't know if this precipitated their asking me to make a decision about the trach.
If I don't get a trach, I can imagine that when I can't use my hands anymore It'll be difficult to remove the secretions and I won't be able to remove the BiPAP full face mask on my own. Some times I have to pull it out when I have to spit my secretions which would otherwise make me choke. I have tried a nose mask but doesn't seem to work too well and the air comes out through the mouth when I fall asleep. I don't know for how long I'll be able to continue like this (without a trach).
So I am thinking: How is my life going to be after the trach? If I'll have to spend my time getting suctioned and struggling to stay alive, it may not be worth it. Not to mention that I would have to live in some nursing home as I can't afford 24/7 care at home.
So probably what the problem could be summarized as is that I should find out which option gives me the opportunity to live a little longer a life that is worth living. I understand this is very personal, but any ideas about this would be appreciated.
Alex

 

[Atsugi]

Very big hairy decision. I really hope we can give you some useful thoughts.
Need a little more input; I missed a couple things:
1. Are you living alone, or is there someone to assist you most of the time?
2. Are your legs and arms pretty much shot by now, or do you still have some mobility?

 

[lgelb]

If you are only using BiPAP here and there, and getting by, Alex, it's hard to imagine you're heading for a trach next week, so to speak. You need more data. Ask for a copy of all your notes and PFTs, whether complete or not. Have a definitive conversation with whoever told you all this, even via e-mail. There are too many assumptions for this to be a real decision as yet.

And, as you mentioned, a trach is not going to magically take care of the mucus/saliva/gunk. Did you discuss your type vis a vis a trach? That could be another convo topic.

I am inferring that you live alone and still walk right now, but do you have space to trade out care for room & board, for example?

Best,
Laurie

 

[affected]

Alex this is such a big and hard choice.

Once you have a trach you need 24/7 care as someone must always be there in case anything happens to stop the machine functioning to breathe for you.

It sounds like you con't have a CALS?

You would need to put this care in place.

You are quite right that the trach does not work for everyone as intended. Also less than 10% of PALS I believe actually opt for the trach at all.

We have had experiences here of PALS having a lot of trouble adjusting and not living long after the trach. We have had experiences of PALS having some really good months after the trach but then passing. And we have had experiences of PALS who have gained years with trach, some happily with great quality of life, and some not.

This damned disease is just so individual that even the information about a trach cannot guarantee anything. So if you are considering I would encourage you to do a lot of research and a lot of future planning.

 

[GregK]

One notable vented PALS is Diane H. She as Dx ~30years ago.

ALS From Both Sides: Vents and Trachs

 

[pittsburghgal]

Alex,

This is a really tough decision. I can give you some input from a CALS perspective.

My husband has had a trach since July 2015. I have never heard that the average survival after a trach is 4 months and I really wonder if that is actually true. Death is always a possibility when having any surgical procedure. I agree with Laurie that it is unlikely that you urgently need a trach/vent if you are using BiPAP so little at present. My husband uses BiPAP via trach only while sleeping.

There is daily washing of the trach site and changing the inner cannula, but it is no big deal. This only takes a few minutes. If you are on a ventilator, you will need someone available 24/7, which in my opinion is the major downside of going this route.

My husband would definitely recommend having a trach because it has given him 11 months of life (and still counting) that he would not have had.

Diane has a lot of experience and I am sure she will chime in here. She has an excellent blog with great information about this which I urge you to read.

 

[Diane H]

Yup, you have certainly reached the spot between the ALS rock and life's hard place! But I do think you have some options left before a trach and definitely before a vent.

First the problem of oral secretions is no doubt mainly saliva. There are many meds that can reduce salivation. The flip side is an uncomfortably dry mouth if the dosage can't be adjusted well enough to find a happy medium. Another pair of options is to shut down a portion of the salivary glands with either botox injection or a couple of precisely targeted doses of radiation to the glands. More water down your feeding tube could thin out the saliva to reduce the "gunk factor".

Part of that gunk could be coming up from your lungs but only if your cough is strong enough to get it up that far. A cough assist machine would help you cough it out and keep it from contributing to the gunk. A trach would allow directly suctioning out your lungs but shouldn't be necessary as long a cough assist machine can do it effectively. A trach before you actually need a ventilator is -- pardon the expression-- over kill. On the other hand, a trach and vent is more comfortable than a BiPAP mask, and can be used as needed simply by putting a plug in the trach tube when not using the vent. The doctors are correct that an emergency trach isn't the best option but we ALS' ers do it a lot. Funny how "No trach, never, no way!" becomes " I can't breathe and I don't want to die right now" when you are in the ER and the doctor says your choice is sedation and death or a trach and vent.

The info that pneumonia is more likely because the air isn't filtered through the nasal passages is technically true but ventilators have filters too. They also have a walnut sized Heat and Moisture Exchange -- HME-- in the hose to keep the air you breathe from being dry and cold just like your nasal passages do. And without the humidifier and its cleaning required for BiPAP.

Another possible, even probable, source of the thick gunk in your mouth is sinus drainage. You don't have to have allergies or sinus problems to have sinus drainage. Sinuses are intended to drain and do normally. But when swallowing is impaired the drainage can't be sent down to the stomach as it is supposed to. It can only accumulate in the throat and back of the mouth. There are medications to dry out the sinuses but can cause problems if used continuously. An ENT doctor could guide you with this if you find that a non-prescription sinus med does help reduce the gunk.

So, at this point I recommend;
more water intake to thin all secretions,
try medications to reduce salivation and consider botox or radiation if the medications other side effects are problematic,
get a cough assist machine,
trial the use of sinus meds,
get a full face mask for your BiPAP,
if you don't already have a suction machine get one and a Yankaur tonsil tip wand for oral and throat suctioning.

All that could help, but your real problem is lack of caregivers. A nursing home is an option but be aware that very, very few nursing homes can take people on ventilators. Some may be familiar with BiPAP and cough assist but that would be important to question as you interview places. Don't just ask if they take such partients, ask how many of those patients they currently have. You don't want to be the first or only kid on the block with these toys!

In home hospice care could be a solution for the time being with a hospice facility later. If Hospice is a possibility there are two extremely important things to consider. First, Hospice is not a single chain of facilities or in-home staff. There are many hospice companies and although legally mandated for minimal standards, the rules for acceptance and level of care they are staffed and equipped to provide can be different, even in the same city.

Second, Hospice is a comfort only arrangement. They will not keep you if you decide to add more life prolonging equipment or treatments later. Get everything you need before you enroll. It isn't that they wouldn't accept you with the equipment, they just won't pay for it or may not have staff trained to care for you with the upgrades in your "stuff. Being on Hospice is not signing a contract that you will conveniently die in a set time frame. If you want to upgrade to a vent you are free to do so if you can find other caregivers or a facility to take you. In fact, an addition to the equipment or treatment you want may require resigning from Hospice, getting temporary care elsewhere while you get the equipment, then reapplying to Hospice. They might be able to welcome their prodigal home again!

 

[Alex123]

Thanks to all of you and I am sorry. I tried to respond twice and got my answer deleted due to mistakes I made. My hands are tired now. I'll respond tomorrow.

 

[Alex123]

Very big hairy decision. I really hope we can give you some useful thoughts.
Need a little more input; I missed a couple things:
1. Are you living alone, or is there someone to assist you most of the time?
2. Are your legs and arms pretty much shot by now, or do you still have some mobility?

Mike,
1. Right now my wife is still working, but in about a week from now she will stop working and will be here most of the time.
2. My legs are a little weak but I can walk. My arms and hands are getting very weak.
What makes it difficult to walk is my dropped head. But when I wear a head holder that I made myself, walking gets much easier.
When I went to the clinic, they gave me a referral to get a motorized chair and a Tobii system. It is covered by the insurance. The motorized chair I doubt I'll use much. My condominium has two floors and I don't go out much except for the ALS forums and the ALS clinic. But maybe I can use it as a comfortable seat in the living room.
Thanks Mike,
Alex

 

[Alex123]

Laurie,
Yes, I was a little surprised by their wanting me to make a decision quickly. They said that we can't wait two months, that I should make a decision in no more than two weeks.
This Friday I will try to get a copy of the medical record for the last clinic day. That should include the PFTs.
As to any conversation with the pulmonologist about the trach I would say that most of the information she gave me was general and not specific to my case.
I live with my wife in a condominium with two bedrooms. With respect to the finances, I do have some savings, but I did a quick approximate calculation and got a large sum for 24/7.
Let's say that I have to pay $30 an hour. $30X24x30= $21,600
In one year that would add up to $259,200. That's too much.
Thanks Laurie and I'll be grateful for any other suggestions

 

[Alex123]

Tillie
Thanks a lot for your advice.
I have a couple of questions for you:
1) If the ventilator stops due to some failure, do people usually have a spare one or how is it handled?
2) If when you say "we have had experiences here about PALS...", if you are referring to the forum, how do you know when they die?
Thanks again Tillie
Alex

 

[Diane H]

Laurie,

I live with my wife in a condominium with two bedrooms. With respect to the finances, I do have some savings, but I did a quick approximate calculation and got a large sum for 24/7.
Let's say that I have to pay $30 an hour. $30X24x30= $21,600
In one year that would add up to $259,200. That's too much.

If your wife is retiring soon, why do you need 24/7 paid caregivers even if you do opt for a trach and vent? If you are being told you need RN's or even LPN's around the clock you have been told the biggest lie about ventilators. Anyone can care for a ventilated patient with only hands on training in suctioning and a basic explanation of what the alarms can mean and what to do if the vent fails. An hour or two will get them started and experience will make them capable of handling most everything. Can your wife do everything needed? Yes, if you get the necessary lifting equipment. Can she do it alone? No! She needs time away to do all the errands, shopping, appointments. She needs time off to just have fun. She needs someone to let her have a few uninterrupted nights sleep a week. But no way do you need 24/7 paid care.

 

[Diane H]

If the ventilator stops due to some failure, do people usually have a spare one or how is it handled?

Alex

A second vent will be paid for (80%) by Medicare but only if you meet their very tight qualifications. (Weirdly worded, and not covering common sense need qualifications as of Jan. 2016.) :evil:
So, in an emergency you can use an ambu bag. You can call your vent equipment company but odds are they won't be able to bring a replacement vent before your caregivers fingers are blistered from bagging you. So it is off to the ER. If you can still breathe on your own long enough you may be able to be driven there. If you have an extra person to ambu bag you, you could be driven. Otherwise EMS transport will be needed. They may have a transport vent or they will ambu bag you.

 

[Nikki J]

To answer how we know PALS died either their CALS was a member, a family member came and told us or another member knew them away from the forum. Are you in any PALS FB groups? My sense is there are more younger vented PALS there.
Here you can read past experiences of Joel C, Graybeard, Santa Joe ( CALS) and tx tracy whose husband TC is still a member. Besides Diane mbmurray is vented now and ENV ( Eric) has been for a long time

 

[patoyeah]

early in my diagnosis, my wife and i visited a quadriplegic pals on a vent. we were visiting friends in Cali, i had met this guy online. i asked if we could visit him, and we did.
Cali was breath taking, spent as much time as we could in the Redwoods. but nothing compared to visiting that pals. it was one of the highlights of my life, i loved being with him.
he had full time care, but it was very relaxed. the care taker stayed in a different room would drop by every 25 minutes, suction him for 5 minutes and leave. i have read some pals do not need suctioning that often.
he was single with money to afford caretakers. i anticipate almost anybody could do the suctioning, about as complex as a tooth brush. i would think a neighborhood kid, or friend might do it for $10 an hour. it might be easier than baby sitting.
probably possible to enroll a volunteer effort through a school / church / neighborhood if a pals was committed to living on a vent. the cost could be much less i think.
as Dianne stated your wife will need equipment to move your bag o' bones, other equipment too.

take care,

pat