Questions about tracheostomy
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Buckhorn
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Thanks for posting this question Brad. I just got my PALS to directly answer the question of whether he would allow a tracheostomy/vent or not. He has been very evasive regarding the answer in the past, but last evening he said he'd "give it a go". He seems to be getting some respiratory distress when eating, when he pulls down the interface to take a bite, etc., and this has been increasing as of late. He is on the Trilogy about 23.5 hrs/day. Hope I'm permitted to post here (if not, my bad)!
notBrad
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You are at the right spot Buckhorn and happy to hear your pals has made a decision. To be honest I don't know why more pals don't opt for a tracheostomy. It's not like you're having to gamble on giving up some sort of great existence versus the tracheostomy.
My take is if you're nose to nose with death anyway so why not take a stab at cheating the SOB out of some more time. Worse case you have some crappy weeks and decide to go out on a nice morphine cloud same as if you never had the tracheostomy.
My take is if you're nose to nose with death anyway so why not take a stab at cheating the SOB out of some more time. Worse case you have some crappy weeks and decide to go out on a nice morphine cloud same as if you never had the tracheostomy.
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Brad,
As to your "why not give it a go" question, I feel obligated to point out that some of our members, like Greybeard [RIP], found even a brief period with it essentially to be suffering. And not to speak for anyone here, but we have some current CALS who have expressed regrets.
Obviously, some P/CALS do well, but it's not a slam dunk, even for a day.
Best,
Laurie
As to your "why not give it a go" question, I feel obligated to point out that some of our members, like Greybeard [RIP], found even a brief period with it essentially to be suffering. And not to speak for anyone here, but we have some current CALS who have expressed regrets.
Obviously, some P/CALS do well, but it's not a slam dunk, even for a day.
Best,
Laurie
notBrad
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Thanks Laurie, I meant no disrespect to anyone here. But you actually bring up a point that I was trying ( unsuccessfully) to make. I plan to get one as soon as it makes sense and should I find it to be more suffering than what I can live with I will not hesitate to be taken off of it.
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No, please, I didn't imply disrespect and I did take your point about bailing if it's not for you. I guess what I am saying is, again, still not something to rush into just to get it over with, in that sense. We talk about going for the BiPAP and PEG as soon as it's more harm to delay, because the damage can be irreversible, but the trach for someone who is in stable respiratory compromise is a far less clear line.
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May I ask what 'stable respiratory compromise' means?
I only ask because I don't understand even though I know the meaning of each individual word.
Buckhorn
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I will be interested to hear the response as well, although I think Laurie may mean that most people with ALS will, at some point, experience respiratory insufficiency. I am not an RT, so I cannot adequately discuss this (again, maybe Diane as an RN will comment), but for instance, my husband definitely has respiratory compromise (limitations), is easily taxed, and I believe is experiencing mild to moderate respiratory insufficiency at times when eating. I believe he is at times experiencing "oxygen debt", eventhough his O2 levels are often adequate (above 90%) when measured by our home pulse oximeter. He is, however, "stable" in that his condition has not exhibitted a sudden change in respiratory rate, dramatic use of accessory muscle breathing (seen in the neck and upper chest muscles) or blueish color of his lips. The question for me is, how long do I watch this before I / we decide that his fairly "stable" respiratory compromise turns into something much worse. As Diane pointed out in her very helpful and detailed response, someone who already has significant respiratory compromise is much more likely to die of aspiration pneumonia, the flu, or even a bad "chest cold".
Brad, my understanding of one of the biggest challenges of having a tracheostomy is that your body will fight the stoma. How much is largely unknown, and it is probably different from one person to another, but an unnatural orifice has been created in your larynx. Your body's natural reaction will be to try to heal it/close it, and of course this is being prevented. Also, almost every patient that I have ever known who still had the plugged trach and Passy-Muir Valve has struggled with a copius amount of secretions/mucus. If you already have that, then maybe it won't be much of a change for you. In my husband's case, he has very minimal bulbar issues at present, so I think that the adjustment to the healing process/copius mucus production would be very stressful for him.
Brad, my understanding of one of the biggest challenges of having a tracheostomy is that your body will fight the stoma. How much is largely unknown, and it is probably different from one person to another, but an unnatural orifice has been created in your larynx. Your body's natural reaction will be to try to heal it/close it, and of course this is being prevented. Also, almost every patient that I have ever known who still had the plugged trach and Passy-Muir Valve has struggled with a copius amount of secretions/mucus. If you already have that, then maybe it won't be much of a change for you. In my husband's case, he has very minimal bulbar issues at present, so I think that the adjustment to the healing process/copius mucus production would be very stressful for him.
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Lots of good questions and concerns! Here is what I know (or think I know!) about trachs and vents.
{QUOTE=Buckhorn;417346] The question for me is, how long do I watch this before I / we decide that his fairly "stable" respiratory compromise turns into something much worse."
I doubt that you and he will have much trouble identifying a serious threat. A cold or fiu will start off with the usual cough, sore throat, fever, aching, etc. Pneumonia is pretty much the same but fever is usually the first sign. With breathing problems already present, it doesn't take much to tip the scales into obvious respiratory distress. An ALS patient can't breathe deeper to combat respiratory problems so you won't see labored breathing as much as shallow breathing and an increasing pulse. A trip to the doctor or, more likely, the ER shouldn't be debated over because things can go down hill quickly. He should not be given oxygen at more than 2 liters per minute unless he is on some form of BiPAP or a ventilator. The doctors may recommend BiPAP with oxygen and antibiotics to see if he can recover. If his condition is beyond what BiPAP can handle, he will be given options: Intubation and a ventilator, with a tracheostomy to be done in the next few days, or to make him comfortable until the end.
"... my understanding of one of the biggest challenges of having a tracheostomy is that your body will fight the stoma."
Aside from a wound infection of the stoma (rare) some people have problems recurrences of granulation tissue at edges of the stoma. It can easily be stopped with a dab of non-prescription cortisone or with silver nitrate to cauterize it. Rarely a big problem.
"Also, almost every patient that I have ever known who still had the plugged trach and Passy-Muir Valve has struggled with a copius amount of secretions/mucus"
Alas, mucous comes to plague us all, trach or no trach. Our ability to clear our throats with a simple "ahem" ramps up to requiring a struggle for a strong enough cough. A trach does seem to increase secretions at first. Or perhaps, we are only aware of the amount of mucous we produce because it can be seen. The frequency of suctioning varies a lot.
I am not certain how many ALS patients can still speak by the time they need a trach. For those that can. A Passey-Muir valve isn't necessary. With a higher volume of air per breath, the trach cuff can be deflated so the person can talk. The higher volume provides enough air for comfortable breathing in spite of the air lost through the vocal cords. So simple and it works great for me!
{QUOTE=Buckhorn;417346] The question for me is, how long do I watch this before I / we decide that his fairly "stable" respiratory compromise turns into something much worse."
I doubt that you and he will have much trouble identifying a serious threat. A cold or fiu will start off with the usual cough, sore throat, fever, aching, etc. Pneumonia is pretty much the same but fever is usually the first sign. With breathing problems already present, it doesn't take much to tip the scales into obvious respiratory distress. An ALS patient can't breathe deeper to combat respiratory problems so you won't see labored breathing as much as shallow breathing and an increasing pulse. A trip to the doctor or, more likely, the ER shouldn't be debated over because things can go down hill quickly. He should not be given oxygen at more than 2 liters per minute unless he is on some form of BiPAP or a ventilator. The doctors may recommend BiPAP with oxygen and antibiotics to see if he can recover. If his condition is beyond what BiPAP can handle, he will be given options: Intubation and a ventilator, with a tracheostomy to be done in the next few days, or to make him comfortable until the end.
"... my understanding of one of the biggest challenges of having a tracheostomy is that your body will fight the stoma."
Aside from a wound infection of the stoma (rare) some people have problems recurrences of granulation tissue at edges of the stoma. It can easily be stopped with a dab of non-prescription cortisone or with silver nitrate to cauterize it. Rarely a big problem.
"Also, almost every patient that I have ever known who still had the plugged trach and Passy-Muir Valve has struggled with a copius amount of secretions/mucus"
Alas, mucous comes to plague us all, trach or no trach. Our ability to clear our throats with a simple "ahem" ramps up to requiring a struggle for a strong enough cough. A trach does seem to increase secretions at first. Or perhaps, we are only aware of the amount of mucous we produce because it can be seen. The frequency of suctioning varies a lot.
I am not certain how many ALS patients can still speak by the time they need a trach. For those that can. A Passey-Muir valve isn't necessary. With a higher volume of air per breath, the trach cuff can be deflated so the person can talk. The higher volume provides enough air for comfortable breathing in spite of the air lost through the vocal cords. So simple and it works great for me!
Buckhorn
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Thank you so much for weighing in on this Diane!
And, for inspirational purposes, I will add this link: David Muir, Inventor | www.passy-muir.com (IMO, it should have been called the Muir-Passy valve!).
And, for inspirational purposes, I will add this link: David Muir, Inventor | www.passy-muir.com (IMO, it should have been called the Muir-Passy valve!).
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Yes, maybe it's not the right combination of words, but given that (1) most PALS have some degree of respiratory compromise, often but not always addressed with BiPAP, and (2) most die without a trach, we know there's a state of affairs in between where things are more stable than they become. Of course, loss of the "will to live" can play a role in death as well as worsened breathing, and often the two overlap.
The conversation to have before things get worse for someone on BiPAP is whether the PALS wants to consider a trach, and if so, under what circumstances, as in Brad's current process.
Diane pretty much summarized the "how do you know if things are getting worse" part.
The conversation to have before things get worse for someone on BiPAP is whether the PALS wants to consider a trach, and if so, under what circumstances, as in Brad's current process.
Diane pretty much summarized the "how do you know if things are getting worse" part.
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I hve been on an IVAPS bipap 24/7 for over two years and would happily continue but am forced to go on trache because the national system will then provide full time care instead of the current 330 h/month that is burning my wife out raising a small girl and working in addition to being my caregiver. If it weren't for that, I'd go with the mask and cough assist until the end rather than losing my say on the choice of caregivers.
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Brad, as a caregiver for my husband Brian, I have to say that the biggest hurdle we face is caregivers. Brian has now been trached/vented for 7 years. I know for Diane is has been longer. In Brian's case however, he is now completely immobile and has been for years. He too spoke around his trach as Diane described for 5 years. He uses a speech device and lives in bed 24/7. The will to live is strong. It's one thing to say that if it's not what you thought you'll just remove the vent, it's another to actually make the decision.
Caregiving can get very expensive and it is why so many have suggested you are sure you have it covered. Currently I go it alone, save a few hours here and there from our ALSA. It does wear on the caregiver and it sounds like your wife has hit that point already.
Brian came straight home after 3 days when he had his done. I was trained in the hospital. He never had any issues with his stoma. And as Diane says, "home care" of a vent/trach is much different than hospital. It is a clean procedure, but not a sterile one. Over the course of 7 years, he has had pneumonia on 3 times. It was quickly caught and dispatched. He has had other issues over that time, but mostly not related to the vent.
It is a decision only you and your family can make together. However, it's not one to enter into lightly. I'd even suggest, if there is an ALS patient anywhere near you that is currently vented, see if you can visit and see first hand what it is all about. Actually seeing is probably the best teacher you can have.
I wish you well in your decision,
Sue
Caregiving can get very expensive and it is why so many have suggested you are sure you have it covered. Currently I go it alone, save a few hours here and there from our ALSA. It does wear on the caregiver and it sounds like your wife has hit that point already.
Brian came straight home after 3 days when he had his done. I was trained in the hospital. He never had any issues with his stoma. And as Diane says, "home care" of a vent/trach is much different than hospital. It is a clean procedure, but not a sterile one. Over the course of 7 years, he has had pneumonia on 3 times. It was quickly caught and dispatched. He has had other issues over that time, but mostly not related to the vent.
It is a decision only you and your family can make together. However, it's not one to enter into lightly. I'd even suggest, if there is an ALS patient anywhere near you that is currently vented, see if you can visit and see first hand what it is all about. Actually seeing is probably the best teacher you can have.
I wish you well in your decision,
Sue
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