Trache questions for Joel or anybody ...

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BethU

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PALS
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05/2008
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US
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Can you get a trache if you are still mobile? What kind of equipment would you have to drag around with you?

Also, if most of your limbs are still (sorta) working, can a PALS handle the related maintenance themselves?

Also, (I think I know the answer to this, but I want to put it out here), are there any statistics on how much longer PALS with traches survive vs. those without? (I assume the answer is "no one's keeping track.")

Thanks!
 
add to that:

Do you have to have a Home Care nurse around to check on it ?

My doctor says 95% of his patients opt out of having a trache. They say it requires 24 hour supervision. WTF > Is that true ?

We want to know.

Glen
 
Okay, here goes! LOL

I was still mobile when I got my trache. It is quite easy to deal with as the yents are small and light. (look for pictures in one of my blogs) They can be put in a small backpack and carried easily. The vent I have will run for 7 to 8 hours on its internal battery before the "25% left" alarm goes off.

I know a number of PALS that do their own suctioning and don't find it a problem. You do not need a nurse, anyone can be trained to care for the trache and vent. It needs very little maintenance. I do believe that by law you need someone around 24/7 just in case something goes wrong.

Since the big killer of patients with ALS is related to respiratory problems. I propose to you that if you choose to get a trache and vent you can live indefinitely.

My biggest pet peave is the medical profession that keeps talking PALS out of venting because they say you can't have quality of life, or you should not burden your loved ones with your care! This is an outright lie. I have a great life and it is very easy to take care of someone with a trache and vent. Between my wife and son they do all my care. You DO NOT need a so-called trained professional.

Getting a trache and vent was the best decision I ever made!

Any more questions? Ask away!

Edited to add: If you are going to get a trache, do it before you end up in ER. This way the recovery is virtually non-existent. Otherwise you could be spending months in the hospital.
 
Thanks so much, Joel ...

My problem is I don't have a wife and son (or other family members) to take care of me, so would have to hire strangers. Without speech, trying to train someone could well be beyond me. Even now, it can be exhausting to try to carry on complicated conversations when I'm stressed or tired.

Another question, if you or anybody else knows: does having a trache conflict in any way with hospice? (I've been talking to hospice people and forgot to ask this.) It sounds really complicated on hospice: Whatever your diagnosed is that requires hospice care, they will not "allow" curetive care for. But they will for other conditions.

If a trache permits a patient to live "indefinitely," perhaps a PALS would not qualify for hospice. Which would be a shame, because it's the only thing (so far) the US government seems to pay for. Hospice is completely free under Medicare.

Instead of going out in a blaze of glory, I seem to be going out in a blizzard of paperwork. Cheesh.
 
Beth, yes, having a trache and vent has disqualified me for hospice. In our part of the country you can only get hospice when you have 6 months or less to live. Hospice, here, their primary function is to assist you in a comfortable death. Next thing to legalized suicide! That is a whole other topic.

I understand your concern, but it is so easy to train someone it would not be a problem, even without your voice. I realize this sounds impossible but now that I have been through it all it is nothing like what I was told. You could hire someone for minimum wage or have several friends trained and they could take turns.
 
Hospice

At first when Tim was Trache and Vented Hospice would not take him. Now that he is DNR he was qualified. The way we made this decision is, when we talked with the Doc. we asked if Tim's heart stopped beating would it make him worse if he were resuscitated. He said yes. So the DNR was made.


Lorie
 
joelc,

Lets say you want a planned trach. What things do you need to have 'in-place' prior to operation?

jim
 
Jim,

A planned trache is the only way to go because you are still healthy enough for a quick recovery.

The things that need to be in place before are;

1) Have all the equipment you will need, like a vent, suction machine and all associated components. (hose, filters, etc.)
2) Have caregivers trained on trache care and suctioning. We had a two day training session in our home (RT came here) and all our kids and spouses took two days off work to attend. We were all trained on how to take care of the tracheostomy and also ventilator trouble shooting and maintenance.

Take a look at my blogs, there are several that talk about my experience and pictures of the equipment, etc. If you still have questions then please ask.
 
add to that:

Do you have to have a Home Care nurse around to check on it ?

My doctor says 95% of his patients opt out of having a trache. They say it requires 24 hour supervision. WTF > Is that true ?

We want to know.

Glen


This trache/vent thing has really been on my mind, especially since last week when I saw my local nuero. During the visit, I asked him what % of PALS, in his opinion, decide to get the vent. He guessed it was about 10%. I could sense he thought it better to go with the 90%.

I don't know what to do. My family has spent a lot of $ on me already, and I think they'd like me to stay alive for a while, so I feel obligated to do the feeding tube thing, but the vent is a big deal.

Why do I have such vivid dreams every night? I don't like it, and when I wake up, I just have to realize I've got ALS another day.
 
Mango ,

Take it one step at a time. To me , the peg is a no-brainer. Like you , the vent still requires some time to think it through.

Glen
 
hi folks...

On the subject of trach and vents... I was reading that in Japan upward in 50% of ALS patients choose to be vented, as opposed to the tiny tiny percentage with ALS who choose to vent in the "western world." Therefore, in Japan, statistically, ALS is as prevalent as Parkinsons. The article cited cultural differences between Japan and Western countries as the reason why more ALS patients chose to vent there.
In Japan, the culture centres around the idea of filial piety -- which basically means that respect for parents, family and ancestors is revered above all else. Of course my description here is very simplistic and generalized -- but it does explain that the massive gap in statistics could be down to a social and cultural belief-- rather than founded on any scientific reason or a neurologist's "concern" for their patient's quality of life. In our society, disabled people are not valued. They are made feel like they are worthless, burdens, like they have nothing meaningful to contribute.

The other side of the coin is, am I being selfish for wanting my mum to remain with me, however disabled she may become? I don't think so, I also think that people cling to life and would not choose to die if they were supported by the family and society at large.

As much as I respect doctors, neurologists and researchers for their work on behalf of ALS, I must also say that they have no idea what it is like to be directly impacted by ALS. While ALS may be their job, it is our lives.

Here's my anecdote on the neurologist's concern for "quality of life" on a trach with ALS: I can read as much as I want about 18th Century France -- I can know all about the social movements of the time, the art, the culture, dates and specifics --- but will I ever know what 18th Century France was like? No, because it's impossible to go back in time. I will never be able to live 18th Century France. Hats off to the academics, but save us your thoughts on how we should live our lives and the quality of life my PALS can expect to have (zero). It is insulting.
 
Okay, here goes! LOL

Edited to add: If you are going to get a trache, do it before you end up in ER. This way the recovery is virtually non-existent. Otherwise you could be spending months in the hospital.

I'll second what Joel said. My mum collapsed at home and had to get a trach done asap when she was in ICU. It was more than 3 months before she could go home with her trach.
 
In researching this option, I've come across a couple of articles of interest regarding trach/vent that may answer some questions:

TO USE TRACHEOSTOMY OR NOT

http://www.alscolorado.org/file.php/88/Getting+Off+a+Ventilator.pdf

Amyotrophic lateral sclerosis: a guide for patients and families

By Hiroshi Mitsumoto, Theodore L. Munsat (2001) (This book is on google books and google shows an excerpt which contains detailed information regarding mechanical ventilation.

On PubMed this article: http://www.ncbi.nlm.nih.gov/pubmed/18023334

Outcome and attitudes toward home tracheostomy ventilation of consecutive patients: a 10-year experience.
 
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CJ & all-

The book by Mitsumoto is excellent! I have it (link to ordering it is on alsa website) & IMHO think it is a great reference for all things ALS related. (I call it the bible for ALS)

For anyone who is newly diagnosed, I would highly recommend it. Lots of information & therapies that are used. Even has Glen's atropine eye drops for excess saliva tip!
You have all your info in one place.

We have lots of info & tips here, but let's face it- sometimes we don't have the time to do a search. I have lots of booklets & pamphlets also, but this one book seems to have it all. (at least, so far for us!)
 
Re: CJ & all-

I had my 3-month clinical visit today, and talked to the neuro about a trache and vent. She was very candid, I think, but I sensed that her response ... and other neuros? ... is based in part on the same thing that frightens the public about ALS: the thought of being immobile, unable to communicate ("sometimes, you even lose the ability to blink," she said), and dependent on others doing the necessary trache "housekeeping" to keep you alive. She said she has known patients who have died because a crisis happened in the venting, and the caregiver had gone out briefly.

My question was, can a patient choose to "un-vent" before they reach that final stage, and she said "yes, as long as they spell the conditions out in writing before undergoing the procedure." I still doubt that I will choose that, but I wanted more info, and was surprised at how personal the subject seemed to be to my neuro ... personal in a good way; she was warm and thoughtful, and it was not a rote dismissal.

Off topic: my visit went well. I was expecting my previous rapid decline in FVC to continue, but instead I have apparently stableized in the last three months. FVC went up from 36% to 45%. (She said, basically it's in the same range... there are always fluxuations.)

They had said they would recommend a right leg brace for me this time, but today said I don't need it yet. I can see my continuing decline, but I am so damned grateful to have not gone down more, I can't tell you. This is one of those days when you really thank your Higher Power for the capabilities and blessings you still have.

Although my FVC is in the range for hospice consideration, the neuro said I'm not physically in need of hospice care yet.

I asked about clinical trials, and there are two good ones coming up. One an antibiotic that requires daily shots starting this fall, and one of a "very promising" new drug that will start this winter. Don't know the details on either, but am on the waiting list for both. I may not qualify because of age, heart disease, or FVC, but I also agreed to donate my brain and spinal cord to ALS research (when I'm through with them), so one way or another, I hope I can contribute to a cure for this stinkin' monster.
 
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