This really sucks

[t34gib]

I posted another reply and I don't think it went up. Question was about feeding tube. I will be getting one in the near future and I am worried about how much it will take away from my everyday life. I am still very mobile, nothing in the limbs yet. I still golf and would hate to not be able to. What is your opinion on this? Will I be able to golf? Will it be difficult to take care of. Prepare me.
Thanks, NancyS

 

[hopingforcure]

Thanks for the info Gordan. This forum proves again that it is priceless. I hate the GOO.. So sorry you dealt with that ordeal Barry. Like Brook said, goodness you think they could make something for this. I just think the doc's do not get how troubling this is for Pals and Cals. I am going to stress it to my Neuro next month that so many on our forum have this problem.. I am so thankful for the forum.. I thank Dave and Al keeping it going. Dave keeps us up and running, on his own dime, and does not even have ALS. and well needless to say what Al and Joel give. I am a lucky to know all of you guys..

 

[BethU]

NancyS ... the tube will not affect your daily life at all, or any sports activities. (Not sure about swimming.) I found my first tube very easy to manage by myself, and discrete. No one could tell I had one. It takes a couple of weeks to discover the ins and outs, so to speak. There are little quirks and shortcuts we all discover.

I would forget I had one most of the time. I'd get ready to leave the house for some excursion, with a can of supplement and the filler syringe and think, "Do I have my tube?" then remember I was wearing it! I could duck into a restroom and take my supplement, using a paper cup to flush the tube with water from the tap, and be out in 10 minutes to sit and rest somewhere while it all settled.

Some people have more trouble managing them, and different tube styles require different skills, but my initial experience was very easy and very positive.

Good luck!

 

[BarryG]

Nancy, no worries at all about the peg tube affecting what you want to do. I have had mine since last February and the only thing that it has stopped me from doing is swimming. I just finished this fall's hunting season and had no restrictions on me because of the feeding tube, I just can't walk too far now. In fact it was easier because packing a lunch meant throwing a few boxes of formula and a syringe in my lunch box and filling up my water bottle and I'm all set. No more making sandwiches or any of that bother. While my hunting buddy was eating his lunch I was pouring mine.

The tube is very easy to take care of, the one thing that I would recommend to anyone who has one is to get a small peg tube brush and use it every few days to help prevent the buildup of deposits on the inside of the tube. This is probably more important for those of us who are on formula but maybe for home made food too, I don't know. My tube got these hard buildups at the point where I kinked it to block it off when I connected the syringe and nothing would take them out so I use the brush to keep them from forming. I bought one online (can't remember from who) but ask about it when you get your peg, it will extend the life of the tube and postpone replacing it.

I am a peg tube advocate because they really are easy and I would not be here now without mine as I can hardly eat anything by mouth now.

 

[rose]

Barry,

What a horrible experience all the way around! I'm glad you didn't aspirate.

 

[BarryG]

Thanks Gordon for the info, I went to the HealthierLungs.com website and I'll look into it more. I have brought this goo problem up at my clinic visits but they have not had any other suggestions for me other than what I have already tried with little or no effect. Hoping, you are right, I don't think that anyone who hasn't personally experienced it understands how bad it is to have your mouth full of a never ending supply of glue. I mean in the absence of a cure, dealing with this disease is mostly about symptomatic relief and mechanical compensation so we do need some real solutions to this problem.

Nancy thanks for the breathing tips, I am being very careful now when I am flushing/brushing/suctioning.

Rose, thanks I am glad too. I have no idea what it would feel like to aspirate, not pleasant I'm sure, but if a person does how do you know and what do you do?

 

[t34gib]

Beth, Barry, thanks for the info. I couldn't imagine giving up golf just yet. I am still improving and want to continue. It is one thing my husband and I do together. He is a great teacher. I will ask about the brush and not worry too much about it. After all it is just one more thing we have to learn to live with. I really am amazed how adaptive we all are. At least there is never a dull moment. I think of this disease like the weather in Chicago. Just wait until tomorrow, it will be something different. It keeps us on our toes. My husband is a bit apprehensive about getting yet as I can still eat, very carefully. But i have lost 30 lbs (and could do with another 20 less) but i understand it is not good. Maybe the fat cells are protecting it from going to my limbs. Who knows. So i will just get on with it before it is too late to get it. Thanks again for the info.
NancyS

 

[tdamess]

so glad you are ok ,wishing the best for you

 

[rose]

Barry, As far as how you would know if you aspirated, it depends. If its a tiny amount, you might be ok anyway, The lungs have these scavenger cells which clean up bacteria and foreign matter in the lungs, but they can only do so much, and stomach contents are probably the worst substance to put into the lungs.

You might or might not even be aware if you got something in there. Some people start to run a high fever right away, which is what you would expect, and have difficulty breathing, cough up phlegm etc. However, the first time I aspirated and it resulted in infection, there was no sudden onset, I gradually began running a low grade fever, had a cough, but it didn't get me to go to a doctor until it reached almost 103(F). I was very fortunate that the antibiotics worked quickly.

If it happens again, make yourself cough sharply several times If there is even a question, if you start feeling achy or develop a nagging cough, you should notify your doctor.

 

[BethU]

Barry ... I'd recommend the cough assist if you are unable to cough, as I am. According to the RT, using it several times a day helps clear gunk out of the lungs, even if it doesn't feel "productive." Apparently we can aspirate saliva a lot without realizing it.

 

[BarryG]

Thanks Rose and Beth, I have been told many times that we bulbar types are prone to aspiration pneumonia but no one has ever told me what to watch out for as far as symptoms go. I am going to ask about the cough assist even though I can still cough on my own.

 

[brendapals]

Barry-
glad to hear you are ok after all that last night...how scary.

and yes, ALS really sucks!

I'm getting my peg tube next week-weakness over losing 50 lbs in 18 months has won. Just hope to maintain!

 

[BarryG]

Brenda , SO good to hear from you, we have missed you! Good luck with the peg tube and let us know how it goes.

Barry

 

[indigosd]

Gordon, I went to the link and found it very interesting! Here is the link ALS, Mucus and NAC
I would be curious to hear what the rest of the PALS and CALS think after they read the articles. It sounds hopeful.

 

[h37skipper]

That is such a scary story Barry. Thankfully you were able to handle that. Maura has both a suction machine and a cough-assist. And like another post we use the cough-assist about three times a day. The suction more often. But Maura does not swallow at all. And hasn't for nearly twelve months. So Gordon, I am wondering if the "big pill" that you wrote of would be of any help for my wife? It would have to go through the feeding tube of course. Presently she takes Mucinex and Amitriptyline to try and control the secretions.