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What are the final stages?

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NCurran825

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Joined
Jan 19, 2014
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1
Reason
Loved one DX
Country
US
State
Ga
My mom was diagnosed at the end of October 2013. Just 2 months before that she was diagnosed with kidney and colon cancer as well, only patient recorded at Emory University to have both cancer and ALS at the same time...., anyways.... she had surgery on the 10th of December to remove the tumor in her colon, she had trouble coming off the breathing tube because of ALS, and now she is on a full time vent at home after spending 34 days in the hospital. I see she is weaker and weaker every visit I make. Dad informed me today that she keeps having these "anxiety attacks" (as one dr. called them) where she can't breathe, but come to find out they aren't "anxiety attacks" just a sign that her lungs are getting weaker and the end is in sight. Is this truly the end? I have had a sinking feeling for the last 10 or so weeks that she would pass on her birthday, which is today January 20th, but I just want to know from people who have seen the end, does this sound like it?

Thankfully she is a saved woman, and dad is constantly getting peace from Jesus, but still this is the hardest thing ANY of us in our family have ever gone through.
 

BrianD

Distinguished member
Joined
Sep 15, 2009
Messages
403
Reason
PALS
Diagnosis
08/2009
Country
US
State
Colorado
I'm not a CALS that has gone through it, but end stage usually refers to
1. Respiratory insufficiency and and not getting enough O2 and build up of CO2, eventually into respiratory failure. Pneumonia could also aggrevate this.
2. Starvation/dehydration for those that have decided against a feeding tube and just can't get enough food or water to continue.

If your Mom is on a ventilator, she should not have respiratory troubles unless there is another issue besides ALS. Other PALS have lived 20+ years using the vent.

But getting weaker and weaker fairly quickly has been reported before.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
Your mother may have had the tumor on her colon removed, but she still has it in her kidney. Also colon cancer usually requires chemotherapy to completely cure it. How is her weight? Many people on ventilators can still trigger a breath, but eventually lose it, eventually the ventilator is totally doing the breathing. I am so sorry for what you and your family are going through; ALS is terrible on its own, but with cancer it would be worse. In my experience the type of cancer your mother has without chemo, and following surgery is grave. Be with her as much as you can, as well as your other family members. Love on her to the end. God Bless.

Paulette
 

mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
Country
US
State
MI
Right before my husband went on the ventilator, he also had the "anxiety attacks". We did not know at the time, but they were the beginning of the end with his respiratory failure. He has now been on the vent for 6 years, but now, without anything else going on physically other than the ALS, he is starting to have respiratory problems again. His lungs are very weak, and has a lot of secretions. These can harden and block his airway. The other day, his O2 (pulse ox taken) dropped to just 50%. We never did find out why, we moved him around, suctioned his traech and in the end, used an AMBU bag to get his O2 back up to the upper 90's . God Bless your father for taking care of her at home. Monitoring and taking care of a ventilator patient can be a 24 hour job. Try to get in there and learn what he does and give him a break so he can get out. Good luck, and God bless you.
Mary
 
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