To tube, or not to tube (feeding tube pros and cons)

[speechie1]

Thanks a million

Thanks so much for all your kind comments. Things are going quite well between myself and the hospice department, it was all a big misunderstanding. As for George, he is still eating and drinking, and I have explained (in pretty great detail) what will happen to his swallowing, and he wants to put the whole swallowing therapy on hold for a while (we tried thickened liquids and he wasn't fond of them!).

Because I found so much information on this website, as well as caring, compassionate people, I actually printed off a few of the forums to give to him to read. Just by reading several of these posts, I have learned a tremendous amount of information about ALS that could NEVER be learned from a textbook. I know that George would not have accessed them on the internet, so I took the liberty of printing them off for him. You all are so inspiring to me, and to many others as well. I had also printed a few forums off for my other patient with ALS, and he and his wife were so unbelievably thankful. They keep asking me what they "owe" me for printing them so much information (I also printed the ALS book from the Canadian ALS Foundation), and I just tell them that it is my job. I certainly couldn't have given them so much information if it wasn't for all of you and this awesome site!

Thanks again for all your kindness and information. I will keep you posted as things progress. Happy Thanksgiving and God Bless!

 

[Al]

Thank you for being such a kind and caring individual. We look forward to hearing from you. AL.

 

[Lindoglvr]

Hi Speechie, I'm also a SLP

Hi Speechie,

I'm also a SLP and have been practicing for 15 years now, with most of my experience in neurogenics and dysphagia. I find it commendable that you came to this forum to ask others how they feel.

I am a SLP that will educate, educate, educate patients and families on the risks of being oral totally, risk of being NPO with alternative means of nutrition and hydration and those who wish I have a tube and then have pleasure intake.

One of the things you may want to do, if not already, is making sure than any patient is having very good oral care, no matter which route they decide to take. It is essential they have clean mouths to eliminate the risk of aspirating oral flora. Oral flora has been shown to increase the risk of aspiration pneumonia more than aspiration of food or liquids.

I tend to try to balance the patients' desires, with safety and nutrition and hydration needs. It can be quite the balancing act as I'm sure you well know, especially if you aren't able to see a patient for very long.

Lots of my recommendations depend on the patient's disease state, desires, severity of the swallow, and discussion with the physican, patient and family on what I'm recommending and the rationale.

Without boring other people on dysphagia here or confusing them, I just want to say that if you ever want to contact me so we can have professional discussions, feel free.

I am new to the board, as I think I now have a MND, but will have to wait to see what the doctor and further testing say.

Good luck with everything and your patients!

God bless,

Linda

 

[Brentt]

changed my mind

I had a negative attitude about tubes when I was introduced to them after my DX. I grew concerned over time and as I progressively weakened and lost weight I knew that I had to do something quite different .I tried things but after choking and almost passing out ( freaked out my wife and daughter ) I new if I wanted to live that I would need to re evaluate my prospective on the PEG . My family is too dear to me and being a burden to them was a big concern to me . When I saw the look on my wifes face after I changed my mind and decided to have a tube installed I knew that I made the right discission . And after the tube was inserted I could see how much of a difference it made .I put on a few pounds and started to show a more vibrant reflection . My friends would tell me how much better I looked and that my facial skin had a healthy glow . But the way my wife has maintained the feeding tube ,the time and care she put into it every day I new that the decision to go with it was right . After 6 months now the opening is almost healed all the way . I know it won't completely heal but the condition at the site is pristine . I have my dear wife to thank for this ,just one more reason I changed my mind .

 

[Al]

Thanks for the input Brentt. We need good evaluations from people that have had these procedures. Whether it is a good or bad experience it helps to know so that we can at least make an informed decision for ourselves. AL.

 

[felicia]

hi speechi, i can not speak. i communicate using a DynaVox talking machine. it has phrases, keyboard to type words and speaks what i want to say. as for a feeding tube, i too, said i don't want one. but i am slowly changing my mind. i don't want to starve to death. god bless, felicia

 

[Lindoglvr]

Hi Felicia,

This is Linda, another speech therapist. I think a feeding tube is good in a lot of cases. For one, it allows you to get your nutrition and hydration needs if you're having difficulty swallowing, even if it's just to supplement oral nutrition and hydration due to swallowing difficulty.

A person with dysphagia, might not be able to meet their needs due to fatigue and the length of time it takes to try to complete a meal. In these cases they need either oral supplements such as Boost, Ensure or others.

Nutrition is so important for chronic diseases. For one, it helps to elminate weight loss, which could lead to skin issues and also bed sores if the person becomes too thin. It also allows proper hydration, and the ability to maintain electrolytes, protein stores, etc which are so important to overall organ function.

I think sometimes people get the idea that once they have a tube, they can't have oral feeding, which is not always the case. As a speech pathologist, I play it case by case and also based on individual desires, their risks, etc when making my recommendations and also educate on the pros and cons of both.

Hope this will help you in your decision making.

Linda

 

[davis06]

fedding tube

hi speechi, i can not speak. i communicate using a DynaVox talking machine. it has phrases, keyboard to type words and speaks what i want to say. as for a feeding tube, i too, said i don't want one. but i am slowly changing my mind. i don't want to starve to death. god bless, felicia

I had my tupe put in a couple mo. now at first I didnt want it but since I have it now
I wouldnt be without it. It really helps I use it when I want . The surgery is not that bad. You just have to take it easy for about a week.

Davis06

 

[felicia]

thank you linda, i was afraid to have a feeding tube because i was in the believe that once on a feeding tobe i could not eat by mouth. god bless felicia

 

[Lindoglvr]

You're welcome Felicia. By the way, medicare changes the rules all the time on what constitutes requiring a PEG and their payment. Your meals might be put down as "pleasure feeds" for payment of the tube feeding. Each facility is different on what they provide for a "pleasure" tray.

Usually, you can get the tube and supplement your intake with Boost or Ensure through the tube, which is cheaper than actual feeding formulas, if your primary means of nutrition will still be by mouth.

Usually it's when you aren't meeting your needs orally (usually a calorie count of less than 30-50%, I forgot the actual amount) in which the tube feeding would be required and then a "pleasure feed" would be implemented.

I hope this information hasn't confused you more, but it's to help clear up the discrepency on once a tube, no oral feeds.

Linda

 

[felicia]

thank you davis0, i needed that good info about the feeding tube. in the few days, i find myself choking on my oatmeal. especially towards the evening when i eat i have a tendency to choke more on my food. the caregiver blends my food but sometimes i don't want him to blend my foods to much. that's when i have to pay the price and choke. felicia

 

[Nita]

My mum

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What can i say my mums been having symptoms of mnd 4 over a year now she chokes on everything her weight has plumitted to a mere 8 stone she was diagnosed in june with mnd she seems happy enough but cant sleep or eat fasten her coat carry her bag everything is a struggle the doctors say dont try to explain the ilness to her why go with feeding tubes and masks only to prolong the illness has she much time left.
I love my mum what do i do ive never cried so much in my life shes just so brave shes only 64

 

[Lindoglvr]

Nita,

I think it's unfair of them to say why prolong it? For one thing, there is a difference in making one comfortable and preventing other problems to make her more comfortable, such as using Bipap to help with her breathing and a tube to make sure she gets her nutrition in hopes of keeping some of her strength up and hopefully avoiding things like bedsores........and prolonging her existence by putting her on a vent later when she has more respiratory problems etc.

The decision should be your mother's with all the information and if she wants her family involved, the decision of the family. No medical person should be making the decision for her or your family. The do not have the right to decide her wishes or your wishes, only to inform you of the consequences of each decision so that you can decide based on ALL the information.

Linda

 

[redlipp]

i HAD A FEEDING TUBE PUT IN NO BIGGIE , MAKES LIFE EASIER AND THROW ALL THE STUFF IN I DONT LIKE THATS A BONUS

what can you eat thru your feeding tube? my dad has been on a feeding tube since early may and all he gets is liquid, he had and anterior cervical spine surgery and hasn't been able to swallow anything since.

 

[Nita]

Hello again thankyou for your replies the nurse came to see my mum today and the dietition she has put 3lb on:-D we spoke
about the food peg my mum said she wouldnt like it.
In rare cases the mind can be affected by mnd which is happening with my mum she does get a bit forgetful and is sometimes like a child she tells the doctors shes not sick and goes on bus rides into town only to come back again 2 or 3 times
a day. Her quality of life is already changed all we can do is
take each day as it comes.