Question about When to get PEG?

[swalker]

I am new to the forums (see https://www.alsforums.com/forum/newly-diagnosed/27588-steve-s-introduction.html for a bit of an introduction).

The doctors want me to start seriously considering a PEG. I have read many threads on this topic, but still have questions about how soon I should take the plunge. I have discussed this in detail with the doctors and have their opinions. I would greatly appreciate input from the folks that have lived through making this decision.

Here is some background:

I have trouble swallowing. I often aspirate minor amounts of thin liquids, but am not really aware of significantly aspirating anything else. Due to the issues with swallowing and the amount of effort it takes to prepare and consume food, I have lost 70 pounds in the last 2.5 years. I am 6' 3" and now weigh about 165 pounds.

My breathing is also affected, with the latest tests showing 32% and 25% capacity, respectively. ABG levels are OK (relatively speaking).

Here is a summary of what I think the medical folks have told me:
1. Neurologist - get a PEG sooner rather than later
2. Swallowing Therapist - should consider getting a PEG
3. Pulmonologist- get a PEG in early January, as future respiratory problems could complicate or prevent getting the PEG.
4. Gastroenterologist- no hurry, can do it any time. Probably should do it before weight drops below 155 pounds.

Thanks for your thoughts. I really appreciate it.

Steve

 

[Nikki J]

If you are going to do it I am in the camp of sooner the better. You can still eat when you have it but it is there when you want to use it. Losing weight is not good for PALS.
If you wait too long you risk all kinds of complications. My sister was emaciated and her breathing was compromised. She almost died ( but is now doing better and regained weight). She admits freely she should have got it the first time she was told to.
It is only going to get harder especially as your breathing is compromised. Are they going to have it done by interventional radiology? That is the only method my neuro recommends for PALS

 

[GregK]

> I have lost 70 pounds in the last 2.5 years. I am 6' 3" and now weigh about 165 pounds.
> My breathing is also affected, with the latest tests showing 32% and 25% capacity,
> Probably should do it before weight drops below 155 pounds.

You have lost a large amount of weight, your breathing is severely reduced and based on your weight loss history you will be at 155 lbs in 4 months.

IMHO you'd be a fool not to get your peg ASAP.

 

[affected]

I cannot understand the opinion of that gastro, I would look for another one personally.

Weight loss for PALS is B A D!

Slight aspirations is B A D - you are at high risk of pneumonia right now.

The peg will allow you to take in lots of fluids with no risk and heaps of nutrition. The longer you wait the more you might consider whether you want a peg at all. I'm kind of an 'all or none' person. To my way of looking at this disease, I would say that you either do all you can - get the peg early, stay hydrated, avoid losing weight, avoid aspiration. If you are going to hold off and are losing weight, becoming dehydrated and are aspirating, what good do you expect to receive from the peg later? Your breathing will be more compromised, your gastrointestinal system will be sluggish and shutting down and you probably won't tolerate feeds well. The more debilitated you are, the less robust you are to withstand anaesthetic and surgery.

No one suggests you get the peg now unless they truly care about your wellbeing.

I hope this helps you with your decision

 

[Graybeard]

Get it NOW! I lost 60 pounds in 15 months before diagnosed, and I am 6'. I didn't have second thoughts about getting it, so got it a month after diagnosis. Due to two sets of incompetent home hellth nerces, I didn't use it for another four months until after a kidney stone due to dehydration. I lost another 6 pounds before VA swallowing techs scared me about pneumonia and VA Nutrition showed me the ropes how to use it with a gravity bag. Since that time in May, I have gained back 11 pounds to 165.

Somewhere along the line I was told that if my weight dropped below about 150, there would be no recovery.

You can deflate the balloon by yourself and pull the tube if you want. The hole will heal right up, they say. In fact, if it comes out, the hole begins to seal immediately, so you have less than 24 hours before it might be a whole new procedure. Yes, Infernal Radiologists are my choice for the job.

 

[Janie H]

I agree, get it asap.

Janie

 

[swalker]

I want to thank everyone for providing such direct and frank feedback. It is why I posed the question here.

It looks like I will be signing up for the PEG sooner rather than later, as in early 2015.

Thanks

Steve

 

[affected]

onya Steve.

You can rely on us to be frank and direct, always with love and concern.

Good on you for making this decision. Once you get it, use it. Don't waste your energy, you can still eat the things you absolute love while you can eat, knowing you got all your calories and fluids through the peg, and medications become a snap too.

 

[texastracy]

I agree with get it now group. I love mine. Being fully hydrated and fed is great now. I still drink, but it doesn't matter if I drink it all.

 

[affected]

I think it is one of the biggest benefits to getting it early.

You can stay hydrated and you can get a high calorie count. Then you can just think about what you might like to eat for the enjoyment and what you might like to drink. No pressure to eat more because you must, just eat what you want. If you don't feel up to eating, still no problem.

 

[ECpara]

I'm a little late on this thread. But just wanted to say that both my husband and I are glad he got his PEG tube so early on in this disease. He was diagnosed Feb 2012, was talked into getting the PEG Nov 2012. In the beginning he used it just for his meds, which was a blessing in itself. He choked on pills, or even when he crushed them he had a hard time getting them down. Slowly he lost the ability to swallow altogether. He started out supplementing his "by mouth" meals with a few bottles of nutrition per day in the tube to make up for the calories he couldn't consume. It kept his weight up. By the time he couldn't swallow at all he was giving himself 6 bottles a day (Walmart brand nutrition plus). His weight has always stayed up. And of course he would have died over a year ago from starvation since he can't swallow. Love the PEG tube!

 

[swalker]

Thanks for the additional feedback. I really appreciate it.

It looks like the feedback is unanimous.

I have decided to do it sooner, rather than later, and am working on getting a few details about it cleaned up so I can schedule getting the tube.

Steve

 

[Graybeard]

Good, Steve. Contact ALSA or somebody who really knows how to feed by peg tube. I had two home health outfits, and they didn't know a thing about it. One gave me a packet of goodies that included a urostomy drain bag and four bottles of saline!

 

[affected]

OMG GB a urostomy bag! The mind boggles ...

Steve, are you considering the DPS at the same time?

 

[swalker]

Graybeard: I am lucky to have folks around me who know quite a bit about PEGs. My god daughter has been on one since birth over 3 years ago. My wife works for home care and hospice as a physical therapist. I have lots to learn, but am surrounded by those that can teach me. If anyone shows up with a urostomy drain bag, I will know it is a practical joke

Tillie: My simple answer is no, I have not thought about doing the DPS at this time. The longer and more involved answer is that I am still pretty new to the diagnosis and admit that I have a bit of denial going on. I intellectually accept what the doctors say and understand the long and winding path that led to the diagnosis. However, there is still a part of me (diminishing day by day) that does not accept the diagnosis. I have made some tough decisions so far (stopping work and getting a wheelchair) , but have been dragging my feet on those that are not easily reversed and those that involve surgery.

Steve