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ccox

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Hello all,
I've been away for some time. Reading, but not posting.
My mom went to the ALS clinic yesterday for her 3 mo. checkup.
Since her diagnosed in early June, she has lost 30lbs! I don't believe there has been any suggestion on the part of her docs for a PEG tube, but I may be wrong. Initially, she didn't even want a PEG, changed her mind, but may have changed it back.
My question is regarding her ability to breath and placement of the PEG. I remember reading somewhere that after a certain number was reached regarding breathing, that docs considered it too dangerous to place a tube. The only number I have from mom is her ability to exhale is at 20. This is considered very, very low. Three months ago it was 29. They're placing her on a BiPap.
And so, my question is----is that number of 20 an indicator of her not being able to even get a feeding tube? Just wondering. It may be that she isn't let us know the docs thoughts on the tube because she doesn't want one and we all threw such a fit the last time she said she didn't want one. It just seems that a 30lb loss in 5 months is huge!
Thank you,
C.
 

Icanmanz

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ccox, hi! I know.......we haven't heard from you in a while. Sorry to hear about your mom's weight loss. My son lost quite a bit of weight too, at the end. It was heartbreaking to watch im lose all those pounds. My son weighed 165 or 170 when healthy, and at the last stage of als he went down to 87 or 89 lbs. That was very painful for me to watch. He had no strength left whatsoever, and his volume was way down. Yeah cox, it hurts! All I can say is may your sweet mom experience a peaceful departure when the time arrives. I have heard that if you wait too long for a peg, the docs will not insert one. Now that's what I was told. My son got his right away. Good luck cox, and God bless!

Irma
 

CindyM

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Hi Ccox- sorry your Mom is in a decline. 30 pounds does sound excessive. I am hoping your ALS clinic gives her good advice. Cindy
 

anne

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Irma...When my mom was first diagnosed June 2006 the doctors were stressing the importance of getting a feeding tube. They never told us that there might be a time that she would not be able to because of breathing issues. My mother held out as long as she could but when eating started to become a real problem and choking was a big fear she gave in.

I am surprised that your son had lost so much weight even with the feeding tube. My mom had bulbar and had her feeding tube in place in Jan 2007 at that time she had already lost about 5 to 8 pounds. Once her feedings got all sorted out she managed to gain the weight and just the day before she passed away they weighed her at the hospital and she weighed 130 pounds. That was the weight that she was always at in her adult life. We were thankfull that with the feeding tube she was able to maintain her weight.

Take care. Anne
 

hboyajian

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Surgery can be more difficult to recover from if there are breathing problems, though I am not sure of all the specific reasons why. Part of it may be to do with how the anesthesia affects you. Before getting a PEG tube placed, your mom should definitely discuss all these issues in detail with both her neurologist (hopefully an ALS specialist) and the gastroenterologist who would be doing the surgery. Also, if there is a way to get them to communicate with each other about the potential for complications, that would be good, since a specialist in one area may know little about the other one's area of expertise.
My dad had a PEG tube placed within a month of it being recommended. He was adversely affected, very weakened by the experience, and went rapidly downhill. He was gone 19 days after the surgery though there was no infection or other complications, and it was considered a successful procedure. His breathing was at about 58% at the time, so was not considered really bad yet. He was 84 years old, so age is another consideration, though one of our members here (Edna May who has since passed on) was also in her 80's and had 6 months or so of precious life after her PEG tube was placed.
 

Mickey

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peg tube and breathing

I had a peg tube inserted when I got down to 90lbs (my weight 3 months before was 120). The operation was 4 weeks ago and I am still weak and my breathing has gotten worse ( I can only walk a short distance before I need to rest.) Also, my speach has gotten worse. Now I can't seem to swallow anything -- where as before the tube I was eating soft foods. Will I improve as I gain weight? I'm using my bipak during the day now and also a cough machine. I feel like the end is near-- how can I tell?
 

hboyajian

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Mickey, I'm sorry you are feeling weak and having difficulty breathing. Please don't hesitate to have your doctor do assessments of how well your bipap is functioning and make any adjustments that you need. It is really good that you got the PEG tube before you completely lose your ability to eat by mouth. It will help you keep your nutrition up and sufficiently hydrated, which in turn will help keep you in better general health. Though it won't change the progression of the ALS and loss of nerve function, you won't suffer from malnutrition and dehydration. If you think your breathing is worsening, that is a serious concern. Talk to your doctor about that. My dad was had a rise in blood carbon dioxide levels shortly before he died. If you are feeling mentally lethargic in addition to the physical exhaustion, get help asap. This can be a sign of elevated CO2, which is not a good situation. Tell your family members and /or caregivers about your changing condition, because they may not know to be aware of gradual changes in your mental state. They need to know to watch for it. My family was so focused on my dad's physical movement deterioration that we didn't quite understand how fast his breathing was going. I hope the end is not near for you, and that you just need a little more time to recover from the surgery and some bipap adjustment to make your breathing more efficient and comfortable. My best to you tonight. take care. Holly
 
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