PEG Tube a Raging Success - so far...

[thelma313]

I am very happy to announce that less than a week after getting his PEG tube, my Dad has gained 2 pounds and looks and feels much better. He is still able to eat by mouth but now he feels no pressure and yesterday we had a big family lunch and he ate pretty good portions of pasta, cheese, broiled salmon and even had dessert! He never choked once. I was so happy for him. He can just take the time to enjoy his food while he gets his nutritional needs met with the tube feedings. He is proud of his weight gain!

In other good news, my Dad took his driver's test this morning to see if he is still capable of safe driving and he has been approved for 90 more days! He was so worried that he would lose his license and I know it would have been a sad day for him if it was the end of his driving. He loves his car! :razz:

 

[hopingforcure]

Thank you for sharing the good news, It is a good day, first we get the good post from Barry and the telephone, and now your father and the peg tube and driving.. I say CHALK one up for the PALS AND CALS today.. Let it be the first of many positive coping measures for this disease.

 

[Jennifer51]

yes thanks for sharing this good news. Only today I told my speech lady that I am prepared to get things going for a tube, so it is encouragement for me that I made the right decision. Thank you.

 

[thelma313]

I really think that not being pressured to eat has made things so much easier for my Dad. Jennifer, I am very happy to hear that you've decided to go ahead with the tube. Keep us posted... I'm sure you made the right decision.

 

[BarryG]

Thelma, I am so glad that your dad is gaining weight and doing well with his peg tube. I know the difference it has made to me, before I got mine I hated mealtimes because it was so much work (even when I didn't have to cook). And hating good food is not something that anyone should have to go through. Now I eat a bit at meals and then sit in my living room every afternoon filling my feeding tube with formula and watch "The Great Canadian Food Show". Fabulous and I don't feel bad at all. Not choking is a good thing.

Congrats on the driver's licence, I can understand how important a driver's licence and car is to an Italian/Canadian man from Quebec!

Jennifer51, good decision, it makes life easier.

 

[Dana Razo]

Thelma,
I am so happy to hear your father is doing much better. I didnt realize that patients with feeding tubes can still eat regular food. This is great news and my husband will be thrilled when I share this with him!

:razz:Thanks for sharing with us!
Dana

 

[thelma313]

Dana, you're so welcome. It took quite a bit of convincing for my Dad to agree to the tube because initially he flatly refused. It wasn't until he dropped down to 143 pounds and meal times became so stressful that he finally agreed. I think he had the impression it would be a lot more invasive than it actually is. Anyway he does not regret it for a moment now. He has more strength and more energy and he can eat whatever he wants without any of us nagging him to eat more.

Barry, my Dad watches car racing, golf and "Everybody Loves Raymond" during his tube feedings Thanks again for all your input. Relating your experience to my Dad has helped him.

 

[DgtofTNfan]

Thelma313
That is great news about your Dad's PEG and weight gain. I am glad he was able to enjoy a meal with you guys without the stress of coughing and the whole concept of "must eat." Great gains!

 

[rocmg]

Great news Thelma!

PALS, 1, ALS, 0. Gotta love the tiny victories!

 

[thelma313]

Thanks rocmg and DgtofTNfan! Celebrating the tiny victories is the best therapy.

 

[Tfisher]

Thelma313,
Great to hear the news about the feeding tube, especially when he was so against it just a little while ago. Also great that he can drive longer. I'm sure it is a boost for his spirits.

 

[[email protected]]

My husband just got a feeding tube on 4-6. It is called a GJ tube as it has three ports - one is the balloon that you never touch, one is the gastric tube which goes directly to the stomach and can be used to give medications, and one is called the J tube which goes directly into the small intestine. The feeding goes into the J tube. He is now fully enjoying his food by mouth because it is not as critical to get all the nutrition he needs only by mouth! The feeding tube gives him the additional nutrition he needs and he has already gained a pound or two. He didn't like being hooked up to the feeding pump while he was awake so now we are trying to do it only while he sleeps. Initially his doctor wanted him on it 24/7 but that was too much for him. I think feeding tubes are wonderful!

 

[thelma313]

I think feeding tubes are wonderful too! I'm so happy to hear your husband agreed to get one and has already gained some weight. My Dad has now put 6 pounds back on! He is doing so much better. I hope he and your husband continue to improve!

 

[brucesdaughter]

my dad is due to get a feeding tube tomorrow, he has had one through his nose for a couple of weeks which feeds him at night (he cannot swallow anything at all now, not even custard!) he complains of waking in the morning and feeling 'really ill' and full and has terrible sweats. l am gaining hope from the good news about your dad gaining weight and hoping it does the same for mine, he is only 55kg and terribly weak, maybe he will gain some strength also

 

[BarryG]

Thelma, tell your dad congratulations from me! We can have a "weight-gaining" race. I've put on almost 11 pounds since the beginning of February and am beginning to feel like a bear (still a skinny bear) getting ready for hibernation because a good part of my day is spent eating and sleeping. The only problem is I'm out of sync with the seasons, maybe I'm a southern hemisphere bear. Anyway I'm glad to hear your dad is doing so well!

jmdanz, I agree that feeding tubes are great and I'm so glad that you husband is doing so well with his.

I was asked at the ALS clinic last week by the dietitian and speech language pathologist how they could bring up the subject of a feeding tube to new patients in a better way. I know that when they first brought it up with me in January of 08 I absolutely, definitely did not want to even think about it let alone talk about it. I don't know if it was the way the subject was put forward, if it was too soon (that was at my very first clinic after diagnosis), if there was not enough information or if I just wasn't hungry enough yet. About 8 or 9 months later I remember saying to my wife "I hate eating" and I said that because of how difficult and tiring it was to eat. That was the point that my attitude changed and I knew that I had to do something (I went from 150 lbs to under 120 lbs). It took about 3 to 4 months to arrange the tube operation but now I'm doing much better.

I told my fantastic friends at the clinic that I would ask my fantastic friends on the forum about this. So my question is: What do you think would make it easier for PALS to come to accept the idea of getting a feeding tube? More education about what it is? More emphasis on how important it is to maintain weight? Selling it as a fashionable trend (sorry Thelma, I had to throw that in LOL). I would appreciate hearing from PALS who have a tube and from those who've decided against it and also from CALS who may have had experience talking to your PALS about feeding tubes.

Barry