Trach - pros/cons

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Hello friends in common!
My husband has Bulbar onset ALS diagnosed 4/2013. Has a DPS and feeding tube. Eats through tube, can still talk some, can walk to the bathroom (with leg braces) with walker otherwise needs the power chair. Is all there mentally and a very intelligent man. His diaphragm is affected along with neck muscles and loss of breathing. Uses the Trilogy with face mask at nigh and some during the day, approximately 14 hours.
We are trying to decide on whether to get a Trach when the time comes. He doesn't want to be totally dependent on us and thinks its no way to live but still its nagging at him. Our children are grown.
Speaking from ALS/CALS who have direct contact with Trach for breathing, what are our pros and cons?
Thank you so much for replying to this difficult question.

 

[Atsugi]

Re: Teach - pros/cons

Mama, your post will get a lot more attention in the "General Discussion" subforum.

 

[Vincent]

Re: Teach - pros/cons

The pros are longer life, with a trach you can go on indefinitely. The cons are more intensive care keeping the airway clear. which is expensive, and at some point it needs to be turned off. This puts a responsibility for that decision on yourself or a loved one. You get to pick the day you die.
Vincent

 

[Nikki J]

People can and do die involuntarily on a vent. It does not make one immune from heart attack, stroke, overwhelming infection and the many other things humans are prone to. However, you do need to consider there may be a time when he no longer wishes to continue on the vent or, as has happened here, he becomes unable to communicate and you have to decide. There is an added level of care and the need for someone who knows how to handle a vent within call all the time. It is not hard to learn but it does require some training. If you hire help through an agency it will have to be a licensed nurse. You could train someone privately though. See if you can meet a PALS/ CALS team with a vent. We have an active member who is on a vent we also have a member whose wife had a vent and died. We have had a number of members with vents in the past. Search for Santa Joe, Graybeard and Joel as three with vent experience stories

 

[Atsugi]

In short, living longer is good, but living longer while totally locked in seems unacceptable to me.

My own wife chose no vent, no trach, no PEG, no tubes of any kind. She reached the totally locked in state where she couldn't even move her eyes, but that only lasted 24 hours. She had a quick, pain-free death with no fear or anxiety, thanks to medication.

So in our case, IF she had been put on ventilation, she might have continued in the totally locked in state for days or weeks or longer, until I made the decision to actively "unplug" her.

Shitty disease.

 

[Diane H]

I have a trach and vent and it was the right decision for me, but not necessarily for everyone. Please refer to the sections of my website dealing with trachs and vents for the pros and cons and the details of trach and vent care. ALS From Both Sides: ALS From Both Sides

 

[gooseberry]

our pulmo explained it like this....if you go on a ventilator/respieator there is little chance you will come off. the family has to decide when enough is enough. with a bipap set appropriately, they have seen pals live 3+ yrs on 24 hr bipap support. to trach or not....this is tricky. he said since my husband isnt having saliva issues he is a good candidate. apparently if you hàve saliva issues, you have more need for suctioning. he told us if you trache you need someone with you all the time.

 

[texastc]

With a trache, you eliminate having to fight the mask of the trilogy all the time...we fought those dang masks constantly.
With the trache, your PALS will pretty much have to have 24/7 care...in case the airway becomes blocked.
Your PALS can do paperwork to make the decision about when to discontinue not a problem....you can make the call yourself rather than force a CALS or family member to make that decision, when the time comes....have it all on paper beforehand.
No more talking...but that is probably over by the time it comes for a trache anyway.
Don't wait to get it installed if you decide to have it. Like anything, it takes time to heal...longer the older you are. No one will want to tell you how long it will take to heal as each individual is different...expect 6-8 weeks for full healing. During that healing time...you will require a lot of suctioning...the secretions are terrible...the windpipe doesn't like the new hardware and will make lots of snot trying to get rid of it. If you PALS is like mine was...we put off the trache til it was entirely necessary...and she didn't have enough fight to get thru the 6-8 weeks of healing. It is so hard for the Pals to fight any kind of difficulty...cant move...cant get comfortable...makes the healing process very difficult. Tracy went in to get the trache installed...took an 11 day stay in hospital SICU...simply getting the secretions settled down...get me trained up to handle the cleaning of the site...operating of the equipment...suctioning stuff ie catheters and pumps. After those 11 days...what little movement of her extremeties that she had when we went in were gone when we got out...layed in the bed for so many days that the movement didn't come back. It made the fight very hard for her...the total lack of movement. 3 weeks home and she came down with a bladder infection...to the point that we went back to the hospital, this time to the palliative care unit. Objective was to get the infection under control and get me a little rest...as the 24/7 care was all I could do. During this hospital stay...her last one...another 12 days...the trache almost was healed up. It got to where we were only having to suction once or twice every couple of hours...but she was totally out of fight. I won't go on...although it was very peaceful. The point is...if you are going to get the trache...get it while you still have enough fight to get over it.
I can go on...or answer more specific questions, but hopefully this helps. It was a huge decision for Tracy too. She chose to go for it...didn't want to choke to death aspirating on spit...and that is another large pro...no more choking on spit.

tc

 

[Diane H]

Thank you so much for the information tc. That is really important to know when considering a trach. Personally, I was so glad to know more about Tracy's situation. I have worried that my website and my story might have pushed her to a decision that simply could not have worked for her. As it was, it didn't, though it might well have had she had not been so debilitated or ended up with a bladder infection to fight when her reserves were depleted. I will definitely add your advice about getting a trach early enough to have the strength to recover to my information about deciding on a trach and vent!


One other comment. You said "No more talking...but that is probably over by the time it comes for a trache anyway." Actually, if you were still able to talk or swallow before the trach, talking and eating is possible after. By deflating the cuff on the trach tube air can pass upward through the vocal cords so you can talk. That is something to try after getting stable on the vent and will require higher volume to make up for the air that escapes through your nose and mouth. I made my mom cry the first time I called her. Neither of us thought I would be able to speak again!

 

[texastc]

You are very welcome Diane. The info you gave her was good and we almost made it work. In those 3 weeks while we were home working with the new trache...it was very hard. The secretions were fierce. There were times that I suctioned her so many times...and it was just draining her...I could see it. But during that time, she learned how to stiffen against the suctioning...to where by the time we went back to the hospital...it didn't hardly bother her at all...the suctioning. My dad modified a vacuum pump that he uses in his woodshop...and we used it during the day suctioning with the catheter. The pumps you get from Health Care suppliers are so weak...compared to hospital suction...and it made suctioning efficient...if you know what I mean. During those 3 weeks...the wound healed...and we...learned to manipulate the cuff to achieve different things. But her swallowing was all but gone by then...as well as control to be able to talk...she could make noise but that was all. The eyegaze computer was a life saver...for lack of a better term...in those last weeks. She was able to communicate freely...telling us everything she needed to...and tell the doctors what she wanted them to do and why. After the first hospital stay, when we got home and she couldn't even hardly move anymore...she got to feeling trapped in there...and wanted out...again, lack of a better term. They applied the dilall...whatever...and it was real peaceful. She never struggled, and I held her til she got there...just like I promised her I would. Point is still...Do these early on for best results I would say.

 

[texastc]

oops...mods got me. there goes my crown!

 

[nebrhahe53]

The Houston ALS clinic doesn't even recommend a trache.bipap yes, trache, no. In addition to heart attacks et al, the trache itself can cause infections, and except for the lucky few, the rest of your body goes on dying. There is a real chance of becoming totally locked in, no way to communicate with the outside world, even with your eyes.
In my time here I would say the majority of people on the trache did not have a good experience.

 

[affected]

Statistics I have read say that less than 10% PALS in the US opt to trach.
In Australia we do not have that option for ALS.

In the case of my husband a trach would have been a total nightmare as he had FTD and was miserable, angry and paranoid. A trach would have only worsened this for him.

For some, who have less rapid progression in the rest of their body, or who are able to find a quality of life living inside their head with very intensive personal care, it seems a trach may be a viable option. For many who opt for a trach it does give some more years of life, but not always. As Neil says, we have had several forum members in the past couple of years who have had very sad trach experiences.

So it takes very careful and honest weighing up by the individual, and just as importantly by the people would be caring for that person.

I do believe that if one is to opt for the trach it will make a huge difference to do it early. I hear so many say - when the time comes ... People say this with the peg too. But this often means, as the very last resort. In these cases, the strategy is too often not very effective because the PALS is already so weak and depleted that it is very difficult to bring them back up to a better place. Placing pegs, using bipap and opting for a trach when they are still in reasonable health means they may be maintained at that level for longer.

Of course with ALS this is not black and white either, there are no guarantees of anything working how we wish it to. But it is safe to say, as a general rule of thumb, that the earlier you are getting nutrition and lots of fluids in, and keeping the lungs pumping well, the better the quality of life the person will have for however long they have left.

When we hear of PALS living for 20+ years on a trach with quality of life, we are hearing of the very tiny minority.

 

[Nikki J]

Drifting a little of course here sorry! But this made me think. I have read vent rates in Japan are about 50 percent . I wish we had some Japanese members to give us their perspective - on vents also on the methylcobalamin and radicut issues.

 

[scaredwifetx]

TC, you just added diamonds to your crown. I can not tell you how much your posts on Tracy mean to me. You both had a very loving and respectful relationship. Making the decisions were so hard for both of yet you stayed united and still are. I am sure she is so proud of you and how you are helping others. The last days were so very personal and hard, yet you shared them with us. If I could ask for anything, other than a cure for a disease that I despise, it would be for all families to be as open, supportive and caring as everyone here is. Just dreaming here but just thing of the effects this would have on our world. What this means to me TC is a crown cannot be taken away from a true king.

And as usual I have to add my inspirationisms. lol! I say you need to add love, courage and hope stones to you crown. Hope this stays out of mod.