Trach issues

Weltschmerz

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Apr 14, 2019
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CALS
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01/2019
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BE
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BE
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Brussels
Unfortunately despite having a feeding tube surgery scheduled for tomorrow, my PALS ended up in hospital last week due to a variety of complications. Since then, she’s deteriorated rapidly and today had to be intubated due to oxygen levels crashing following a pneumonia diagnosis. I wasn’t there as I’d gone home after a very long stay, but our main caregiver was and described the situation to me in detail. It was only on Monday that the medical staff raised the issue of a trach, asking for our views. Even yesterday the consultant neurologist literally said to me the decision wasn’t required in the next day or so, but likely by the end of the week. Before all of this, my PALS and I had had discussions in which she expressed a preference for a trach, though without knowing all of what we learned on Monday. (For example that as a trach doesn’t stop ALS progression and my PALS has already lost all limb function and swallowing, they can’t rule out the eyes being impacted.) In addition we live outside our home country and did not know there was no support offered. That gave pause for thought but with only one day between the conversation and now, we didn’t re-explore it. Now I’m hoping the intubation is successful and we have a little time. But it’s all brutal and we don’t have firm plans or thoughts. I’ve looked up some trach posts here but people seem to have experience earlier in the process. At such an advanced stage of the disease I’m not sure there is much experience...is there?
 

affected

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I'm so sorry that happened this way, so fast and sudden for you!
The experience at this stage is not always a good transition to the tube, but it is so variable that it's really day at a time stuff. I wish I could be more helpful, but I have known PALS with emergency trach to then live on a long time at this stage, and others who suffer infections and other complications.
You are in my thoughts indeed.
 

lgelb

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We have some P/CALS who can speak to trachs that were placed late in the disease. I am sure they will chime in. Your learnings from Monday are correct, so this is where you will really want to understand the care that a trach requires, the kind of life that can be expected, and document what support you do or do not have, from any source.

You do not want to make that decision under duress, so I would work on that straightaway. If her pneumonia is severe, you may be called upon to make a decision in the moment. You can't rely on the timetable they're guessing at. I take it she is receiving antibiotics?
 

Weltschmerz

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Joined
Apr 14, 2019
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CALS
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01/2019
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BE
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Brussels
Yes, she’s receiving antibiotics and is heavily sedated. They hope to wake her up today and if that’s successful we can hopefully consider our options with her using her eye gaze to communicate. I really didn’t understand all of the limitations of a tracheotomy until the discussion on Monday, and I know my PALS didn’t either. Until the morning of intubation they thought it was “only”bronchitis. We thought that was the first good medical news in a year so sat back and relaxed together a little. In any event, now it’s all super tricky and I’m quite nervous about the necessity of a decision. For the moment the intubation is in place so I’m hoping we buy a little time. Her parents are (separately) flying over from the US today and Saturday. Thank you both very much for the response. This forum has been such a source of support.
 

jonico

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Feb 21, 2017
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Hi Welts...

As you are already experiencing, it is very complicated. You may have already made your decision but I thought I would share a little of our experience. My wife got her trach a little over two years into her diagnosis. That was about three years ago, and we've been able to make it work. That being said, she was a very healthy woman other than the ALS and relatively young at 52 when trached. She was able to do it electively after two aspiration pneumonia hospital visits in two weeks. It was still a pretty tough go for a while after the operation.

She was almost entirely incapacitated at the time of the operation and has been relatively stable since. She has been able to enjoy a fulfilling life of sorts (does still get outdoors for outings of some sort most days), although dramatically different from when she was well and very active. Her eyes still work quite fine and she communicates nicely with her Tobii Eye Gaze. She can't do that for too long each days, as her eyes get tired. Both of us are glad she went with the trach, but we are at a point where she could well live several more years and I am feeling pretty burnt out...so something has to give at some point.

I can't begin to understand your situation there in Brussels...how you will afford it, how accessible your home is, what kind of help you will have. I wouldn't advise someone one here in the states to do it or not to do it. It is an extremely personal decision. Please understand that since your PALS has lost all limb function and swallowing, like my PALS has, she will may well need near constant care and attention. You'd be super human to do it all yourself.

I'm sorry you both are in this situation and I hope you are able to gather some good information of how it can work there in Belgium so you can make as educated a decision as possible and have some peace about it. Hope this note helps a little.

All the best!
 

Weltschmerz

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Joined
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Messages
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CALS
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01/2019
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BE
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Thanks, Jonico. Lots of good food for thought there, especially as most medical professionals don’t have much experience with a trach + ALS combination. My wife is also almost entirely incapacitated at the moment, also with eyes working fine, but I was concerned to hear that things could still progress further. We are still working to gather information but your experience here and on other posts is helpful, thanks.
 

Weltschmerz

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Joined
Apr 14, 2019
Messages
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Reason
CALS
Diagnosis
01/2019
Country
BE
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BE
City
Brussels
Well after a week of intubation, the tube was removed and ultimately reinserted after 24 hours due to increasing secretions in the lungs. We continue to find it difficult to have a meaningful conversation about the tracheotomy and consequences etc., in amongst these acute issues. I can only recommend getting into the trickier stuff while it’s abstract...
 

jonico

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Feb 21, 2017
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CALS
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12/2014
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So sorry friend! That is very good advice, but certainly understandable you didn't get to it with all you have going on and such fast progression.
 
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