Status
Not open for further replies.

mysisterskeeper

Active member
Joined
Sep 14, 2012
Messages
44
Reason
Loved one DX
Diagnosis
00/2000
Country
OH
State
ohio
City
columbus
The hospice nurse said that if my sister decided to vent at this point she would probably still die because of cell oxygenation and how little oxygen she is moving through her body. She said her o2 stats may look good on a pulsoc but that is only measuring the blood content not how much oxygen is in the cells. He said that what could happen if she decides to change her mind again and go full code the emts will intubate but once she get to the hospital they may decide she has no quality of life left for a vent, or they may vent to see that she cannot sustain life anyway because of the low cell oxygenation. Anyone heard of anything like this?
 
I am not a doctor, so what I say may not be correct.

Okay, how do cells get oxygen to them? First, you need a sufficient amount of air in the lungs. Then then you need the lungs to sufficiently exchange the oxygen and carbon dioxide. Then you need the heart to sufficiently pump the blood to and from the cells in the body. And then you need the cells to exchange oxygen and carbon dioxide.

So, with ALS typically the only problem is the diaphram can't get the air in and out of the lungs. If that is the only problem, then a vent should solve that problem. But if there are other medical condition causing a disruption of the other processes, a vent may not help that.

My biggest recommendation is to call your ALS Association chapter to see if they can recommend a neurologist or better yet a pulmonologist that can aswer your questions without bias. Hospice people may not be your best source of information. Just like it is not the decision of the hospital to decide if your sister is worth having a vent... at least not today. That is why it is important she decide before an emergency where she can't communicate clearly.
 
I agree with everything Brian said. Your sister really should have her wishes stated clearly, preferably legalized. Yasmin.
 
Yes, everything you wrote about what the hospice nurse said makes sense from my experience with my wife's ALS. She was a doctor, and explained to me that blood chemistry and gases built up deep in the lung aveoli prevent oxygen from getting to the cells, even on the best vent.
 
so everyone isn't necessarily going to live long on a vent with als
 
No, people can live on vents for years. Is this your concern?
 
The 'issue' is so called quality if life. But with a good support package and providing there are no other health issues folk on vents can live long and fullfiling lives. There are examples on PLM and a couple on here. D
 
I get that they can, but are there some who have waited so long that they cannot?
 
This is my opinion. So, I hope not to get bashed by other members. If I was the one making the decision at this point for one of my loved ones. I would most definitely say No, to the vent. That is no quality of life when you can't do the things you love. But, your sister needs to make this decison herself since she's able too. I would just try to keep her comfortable, pray with her, and hold her hand. This I know is extremely hard to do. I was holding my mom's hand when she passed away. We had to respect her wishes for no DNR. It was so hard not to pick up the phone and dial 9-1-1. Hang in there. I'm praying for you. Kim
 
Many people live for years on a vent. Go with your sisters wishes. Ignore everyone trying to talk you and she out of it
 
It's a personal choice. Her doctor should be able to tell her if she is healthy enough overall for the vent to be useful.

I can tell you that an ER doc can't decide her quality of life, only SHE can.

If she has no DNR. EMTS would imtubate if she is in respiratory arrest otherwise.

There ate pros and cons to venting. Some can and do live years on a vent. It doesn't mean they can't get an infection or something, though.

What are her wishes? A vent will require training for her caregivers, but it's doable unless her overall health is simply too poor.

Often people, including doctors, impart their own opinions on what constitutes quality of life. She is the only one that can determine what that is for her at this point.

Is she using bipap now? There are some very food posts by a member here that passed away last year named JoelC with a lot of vent info. Both pros and cons.

It's easier in the US than in other countries.
 
Didn't the Hospice folks tell you that she is already in the preactive stage of dying? What signs are they seeing?
Does she have an indwelling urinary catheter? Has her urine output dropped off?
Does she have a Peg? Is she still eating and taking fluids by mouth?
Are you noticing intermittent mottling of the skin on her arms and legs?
If this is the case her body may already be starting to shut down. There may be a problem with system wide perfusion especially if she hasn't been using a non invasive ventilator like the Bipap.

Please try to get some rest for yourself while the nurses are there. You will be able to make better decisions if you've had some sleep.
 
There are some good articles on what to expect at the end of life at caring dot com.
 
Deb posted some really good questions to consider in making your decision. I just really feel bad for you and others going through this. I pray everyday for all of you. Try to get some sleep when you can. Kim
 
Deb is really insightful on this subject. My wife chose not to vent, no PEG, no tubes. Only a catheter toward the last days. She (and we) were very happy with her decision. I think most doctors would prefer, themselves, not to live with vents. It's really a personal decision.

And that's a big point. Most of what ALS does is rob its victim of choice. So let the patient decide, without pressure, and support the patient's choice wholeheartedly.
 
Status
Not open for further replies.
Back
Top