Feeding tube scheduled but having second thoughts

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azgirl

Senior member
Joined
Jan 20, 2014
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961
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
I am tired. My FVC is about 30. I have no regrets about waiting so long to get feeding tube. My family is drained physically, emotionally, and financially, although none of them complain. I still feel enormous guilt.

Part of me wants to forgo the procedure, enter hospice ' and be done with this nightmare.

My concern is that they will have to entubate and I will be on able to breathe again on my own, leading to trach decision. I have dnr in place that says no trach , but would hate to wake up and half to make that decision.

This is a tough decision and wanted the opinions of those who understand so well what I am talking about. surgery scheduled next week
 
Why are they not doing this with a radiologist so it would be minimally invasive and so they won't have to knock you out? Just remember that the feeding tube can be used to administer meds and keep you hydrated as well as food.

For me, I would consider a feeding tube the same was I regard a BiPAP and that is to avoid suffering.
 
AZgirl, it's totally up to you when you've had enough-- you may consider what you think your family thinks, but remember, you don't know that for sure. You do know about your own experiences and feelings. So what it boils down to is, when you say "part of me," is that part bigger or smaller than the other parts?

For some here, the procedure (which I agree should be done in radiology, esp. given your FVC, and you should have BiPAP access during the procedure), has been pretty simple. For others, it has involved days and weeks of suffering. It should not involve significant respiratory impairment absent the unforeseen.

But the real issue is after the procedure, what you will feel you will have gained. Only you can answer that.

Also, you can stipulate no intubation (it would be written into the consent form), to avoid the trach issue, if that is your wish. Will there be family with you who respect your wishes and can legally implement them if needed? That is advised no matter how short a stay, for anything.

Again, if you do opt for the procedure, I would make sure it's in radiology.
 
I got my tube when my FVC was 24%. When the FVC is below 50% or so it should be done by an Interventional Radiologist. I was awake the entire time, a pain killer is shot into the skin of the belly. Takes 20 minutes, its easy

I recommend getting a feeding tube. From what I have read death by starvation is brutal. The easier way to go, is with morphine via hospice
 
Kay, I've been thinking of you a lot the past week and was wondering how you were going with the peg decision.

I totally agree with what has already been said - if you are having the procedure as a RIG rather than PEG, and you have your bipap in there, something has to go really terribly wrong for you to be intubated.

I hope you can think through all your feelings, and talking them out will help with that I hope. It is totally up to you. We can all have opinions, but no one else really knows how you are feeling and what you are going through. I personally will support any decision you make. I would like you to simply make a really informed decision that fits what you really want.

Many hugs my dear friend xxx
 
like Tillie and Laurie said. When its done by a radiologist, its called a RIG
 
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I am getting mine on Thursday. While my FVC is still over 70, I am having a lot of trouble drinking enough water and eating. I have been aspirating often, hence I am looking forward to getting this done, particularly as the weather warms. I agree with patoyeah. I think death by starvation would be prolonged and miserable.
 
Even Brian would get a feeding tube if he ever needed it for Meds and hydration. I also agree with those who say starving to death is brutal - if you are going the course get hospice involved with morphine but don't stop nutrition. A lot of people here have said more well thought out things, but my simple advice is get the tube.
 
Reporting facts about your experience with the procedure and why you chose it or didn't is one thing, but it is inaccurate to equate not having it with starving to death during a long period of suffering.

There will always be people with ALS, Alzheimer's, cancer and more who opt out of or aren't cognitively equipped to agree to the tube. And there are many, many more who stop eating as a choice, tube or no.

All can die well and in peace with some forethought and care; I count three off the top of my head in my family and many more I've seen at work.

Best,
Laurie
 
I agree that it's not true that a PALS will starve to death without a peg and it will be brutal. Here4Her and Atsugi had medically trained PALS who refused the peg and died beautiful peaceful deaths at home.

I've also known some here in Australia that are not members here and they still had peaceful, dignified deaths without a tube.

I would still say I would have a feeding tube, but I would totally support any PALS who elects not to have one. We love you Kay xxx
 
I think the idea that no feeding tube results in a terrible death comes from the reports from a PALS who chose to end things by suddenly stopping eating and drinking. This is inherently different than what happens when you gradually eat less and less and things naturally shut down, especially if you have the appropriate end of life support and medication.

Kay, you know I advocate for feeding tubes. However you need to do what is right for you. It does seem, though, that if your tube is properly planned ( RIG) the intubation issue should not enter into it
 
i am going off the emails from a pals that passed. He did not have a tube. He stopped eating and taking water to end it, as Nikki described

He was tough and Heroic, he also said dont go this way. Why is that invalid info to share. He did it with the help of hospice. His descriptions were brutal without a tube this can happen also

Why is it inappropriate to share this? That info influenced my decision to get a tube. Without a tube it can be difficult to get hydration and medications
 
I am an advocate of feeding tubes Pat and I think Ben's experience is important to know as I know other PALS have considered that way out. As I said above, though, what happens with gradual withdrawal of nutition is different which was the context here.

I have had all three scenarios in my family - tube, no tube by choice and sudden loss of nutrition ( had a tube it came out and the person refused reinsertion). There was a big difference in how things went
 
The procedure as planned now is a PEG with light sedation like that for a colonoscopy. Done by surgeon who does all patients at my clinic. RIG was not offered and not sure why but will asked my doctor .

Losing my voice has taken so much out of me and I am afraid of bećoming locked in more than dying. I am pretty confident that hospice can help make passing as peaceful as possible. I've had a wonderful rich life and even the past four years have been beautiful in so many ways.

Thank you all for your replies and support, it is so appreciated as the decisions get harder.
 
Pat, there are shorter and longer paths to death once the decision has been made to stop sustaining life. Just want to make sure both get equal time.
 
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