feeding tube update...............

This is an update on my current conditions / issues as per the response of one our ALS support group advocates today...........

I will have to be making some decisions very soon...........
that I have been trying to avoid....................
>>

"Lindsey,

I heard back from Jerry this afternoon - shortly after I sent you my "long-winded" email. He says that your FVC in August was 50%. When I talked to Brent a couple days ago, he mentioned that you were considering a feeding tube. Feeding tube placements are less complicated when the patient has an FVC of 50% or above. Recovery is faster and there is less likelihood of any complications. Brent told me that you had some concerns about a feeding tube. I will tell you that most of our patients do very well with feeding tubes. It keeps you from losing weight. It makes mealtimes faster and easier. You can still eat anything you want by mouth. It's a good way to take in the liquids that you need without choking. It's a great way to get the extra calories that you need into your diet. It is unobtrusive -- unless you tell them, no one will know that you have a feeding tube. Once it is in place, you can use it as much or as little as you want to. The procedure can usually be done as an outpatient or at the worst with a 24 hour stay. Good nutrition is very important to the management of ALS. ALS burns a lot of calories and it is hard to eat enough to make up for that."

"So that's my "talk" on feeding tubes. However, the decision has to be yours. There isn't a right or wrong decision. Feeding tubes are considered the standard of care for ALS, but I've also had many patients who have chosen not to have a feeding tube. My job is to give you the information you need so that you can make a decision that is right for you. Let me know if I can help."

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I will add to that, that...it was suggested during my visit to OSU last month (end of August), that I STRONGLY consider having a tracheotomy at the same time that the feeding tube is 'installed'.....

as I may not be 'up for it' if I wait until later........

I am emotionally upset about this.   I told my husband last night...as I let the emotions come out....that I am scared...SCARED of what I have to look forward to........

I said this following a choking episode when a pill I was taking began to dissolve at the back of my mouth just as it was being swallowed.  I started choking and as best I can describe to you....it is as though my throat starts to collapse and I CANNOT breathe until I get it opened back up again......and I cough and  cough while trying to to breathe etc.. This happens occasionally and I have to be extremely careful when consuming ANYTHING be it liquid or solid.

That, is one reason I am losing weight.  I just cannot eat like I should be... the food I need to nor the quantity.