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Familydad

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My wife has always been against her having a tracheostomy. She is 53 years old, Bulbar onset ALS diagnosed three years AFO. The Pulmonologist asked her about her wishes and she said she was no longer sure. She has lost all voice and has minimal right thumb movement along with some head/neck control. Her eyes are good. Those with tracheostomy experience-PALS or CALS, I need some input on pros and cons. Please be honest. The Pulmonologist said if we want a tracheostomy, now is the time.....Bucky
 

Jeff Long

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Bucky,
I'm only smart enough to tell you to read several posts by a wonderful lady here, Santa Joe. Extremely informative and honest.
 

Nikki J

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Read also Diane's posts and her website. Maybe join patients like me and check profiles and posts of patients there.
Are you talking about trach only for secretion management or trach and vent?
If you are going to vent you need to talk about the possibility that she might want to discontinue the vent at some point. I think that must be a very hard thing emotionally for a CALS. There is also the possibility that on a vent she could become truly locked in and unable to communicate if she gets to a point she can't eyegaze.
People do vent. More than is represented here. I think it is about 10 percent in the US. But I would talk long and hard with her
 

Diane H

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Are they recommending just the tracheostomy or a tracheostomy and a ventilator? Kind of unusual to do just the trach. By itself, the placing of a trach tube would allow suctioning of the lungs to clear the airway. It wouldn't help her over all breathing though.

Being trached would make the addition of the vent later very simple. Perhaps too simple. A vent is not for everyone. Those with rapid progression and loss of nearly all movement will face being locked in (mind is working but with no way to communicate even yes/ no) fairly soon. A patient can request to be taken off the vent and allowed to die at any time, and the process will be done under heavy sedation and other meds for a peaceful death.

The hard part is deciding "when". If the patient waits too long, he or she can be locked in with no way to say turn off the vent. Patients can live for years in this state. Most people consider that an extremely undesirable way to live. Family is stressed terribly. No one should go on a vent without deciding when they want the vent turned off and telling their family and doctors that decision. Giving medical power of attorney to someone they believe will carry out that decision is critical. Often the best person for that job is not an emotionally torn family member.

Diane
Vents and Trachs
 

Nikki J

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It seems just a trach for secretion management is becoming increasingly common. I have several FB friends who have been offered it and most chose it, one has since passed as he chose trach but not vent
 

affected

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Hi Bucky and welcome, though I am so very sorry you have had to make it here.
I agree that I would like to know do you mean just a trach or a trach and vent.
 

sadiemae

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Also look at posts from JoelC
 

sadiemae

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A trache without Vent makes it easier to manage secretions. If the PALS is still active, this can greatly add to quality of life. It also can bring on more problems, and lead to becoming vent dependent.
 

Familydad

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CALS
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10/2012
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My wife has always said she does not want be on a vent, but a pulmonolgist I have brought in for help at home has brought up the tracheostomy, initally without ventilator. She has a Trilogy at home which can function as a vent. We have four daughter (25 years old to 14 years old) and it has brought "discussion". The same points you have brought out above are being discussed if she uses the trach for ventilator use.
1. Quality of life on the vent if she becomes locked in.
2. I am phyisician threefore blessed to be able to perform most of the caregiver duties, including urrinary catheter when needed, waking at night to tend needs, lift, etc., but must work it around a full time practice. My daughters worry about my ability to do anymore.
3. I have medical power of attorney for my wife. My daughters worry about the stress of me having to make the decision to stop the vent.
 

Familydad

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Joined
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Messages
6
Reason
CALS
Diagnosis
10/2012
Country
US
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LA
City
Baton Rouge
Thank you for all your advice:
Jeff Long- I will read Santa Joe's posts
Nikki J- I will read Diane's posts. I am so sorry you and your family are affected by this horrific disease. Would you consider trache/vent?- if you want to answer
DanieH- The easy transition from just tracheostomy to ventilator does seem, maybe "too simple" I will read your posts about "vents and trials"
Greg K- I will look at older posts
Sadie Mae- I will read Joel C's psot

Wife and family are struggling and thank you for necessary advice.......Bucky
 

Nikki J

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Hi Familydad
I always said I would only vent if I were bulbar/ respiratory onset and I was still pretty functional when the issue came up. Then possibly. I am leg onset so unless things take an unexpected turn no.
I will do feeding tube bipap and probably DPS but no vent. My sister who is late stage is considering it. I hope she does not but I understand why she has a child even younger than yours and that does raise issues.
On a separate note,I share your daughters' concern. My sister's husband is in much the same place, not a physician but a very demanding job fulltime plus. I see the toll it takes. Being a physician complicates things too. You intellectually and physically can do every task but you can't do it all. Things become easier and harder when you are in the medical field
I hope that you have caregivers sometimes when you are not working so you can have some downtime
 

Familydad

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CALS
Diagnosis
10/2012
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US
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LA
City
Baton Rouge
Nikki,
As you know the progression of ALS is so different for every PALS. I have watched Tracey's Bulbar Onset progress so horribly. At the beginning with minimal involvement, it was emotionally challenging, but brought our relationship even closer. As it wears on and she is now chair bound, lift dependent, needing feeding tube, the journey is starting to become physically exhausting for me.
She has her "love birds"/ friends that come while I am at work and we had sitters that come durng part of this time and it makes such a difference to Tracey. She still has a purpose and, with their help, she can still impact her daughters and others in a positive way. I think she is not afraid of being with her PaPa (in heaven), but petrified of the process.
Tracey fought having anyone else care for her except me until a few months ago when we hired a couple sitters. One sittert is great the other is a work in progress. She fights the ALS by not accepting its progression. Not healthy, but she will not discuss progression or end of life with me. This makes the trach discussion next to impossible.
Except for work, my outlet is a group of my friends play cards with me on Friday night, while a daughter stays with Tracey, coming to get me when I am needed. It is working okay. If the tracheostomy is decided upon, I will need some more time off. Please pray for us and this decision.
I hope your ALS progresses sooooo slow. I am so sorry it runs in your family. Nikki, I will keep you in my prayers......Bucky
 
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