PEG-potential downsides to early implementation?

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LizF

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After quarterly spirography testing, my FVC has been 96% + since diagnosis in June 2016. However, my most recent test (last week) shows I have dropped to 71%.

My respirologist is concerned, as that's one big drop, and has booked me for another test in December instead of waiting quarterly. He said I should be thinking about having a PEG, which I am certainly open to.

I looked back over all the other threads I could find but couldn't find what my particular question is, so please forgive me if it's already been discussed. My question is, is there any drawback to having it installed early?

I have limb onset and zero issues with swallowing, breathing, saliva etc; I know that just because I'd have it, doesn't mean I would need to use it.
I suppose my concern is if surgery will hasten progression.

Input welcomed,
Thx Liz
xo
 

affected

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You can have a RIG placed much closer to being needed.

I'm an advocate for getting the feeding tube early, but early in swallowing issues.
 

Nikki J

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I have always promised myself I would do this as soon as it was suggested. My sister did not and waited so long the RIG was a tough procedure because she was emaciated and weak. Her swallowing breathing were both bad.

You are in a different place so I don't think there is a rush at all. Generally PALS tolerate the procedure ok especially if it is done when you are strong. I trust my neuro implicitly and if she said do it now I would.

Your neuro said think about it? Maybe he is preparing you if your next test drops significantly ( I hope it doesn't).

Was there any talk of bipap?
 

Firefighter58

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Liz
Just like you can wake up one morning with a speech impediment that can only get worse, you can also wake up with a swallowing problem that will get worse, I certainly recommend that you get a tube earlier rather then later. I did that and have no regrets, I take my foul tasting vitamins with it and is not an inconvenience.
Al
 

lgelb

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There is no evidence of accelerated progression, though obviously not a lot of data since most people hold out till or past when they need one.

There is evidence of benefit if done before weight loss begins.

As with any procedure (and the recommendation is to get it done in Interventional Radiology, not surgery), it should be done when you are feeling good, not unduly tired, stressed or sick for another reason.

Best,
Laurie
 

LizF

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Thanks for the input!

To answer some questions from above:

I don't see a neuro, all my follow up is with my GP and respirologist (who handles the decisions re surgeries). He is "the guy" for ALS patients where I live, and he's conservative and not necessarily abreast of the latest in research.

We have discussed biPap etc, but he's deemed it unnecessary yet-breathing fine, breathing okay on back, no issues waking up with headaches, 02 SATS are normal, that kind of thing.

I will ask him about Interventional Radiology vs surgery, as he hasn't mentioned that option at all.

Thanks again!
xo
 

Kristina1

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I do have some swallowing issues, but I still eat all food by mouth- just with some modifications. There was no rush for me to get the PEG but it was suggested to me at Clinic that I could consider getting it done early so that it's there when swallowing gets worse. I decided to get it, and my main reason was because taking meds is really hard for me due to the swallowing, as well as getting enough water intake.

Let me tell you, I am SO GLAD I got it this early. It has been a learning curve figuring out how to heal and care for the stoma, and learning what works for me with using the tube itself. I feel like it would be so much harder trying to learn this if I were further progressed in the disease. Now when the time comes that I truly need it for my nutritional intake, I'll be an expert and I'll already have a fully healed stoma and tube tract.
 

azgirl

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I waited a year after first being told and that worked for me, but maybe I was lucky. Had peg when breathing was 30% which made recovery harder, but still no big deal.

I am limb onset with breathing good in the beginning. Starting bipap early was key for me , that I believe is extremely important.

Sounds like you have a little time to put it off, just don't wait too long. I didn't want to mess with tube in pool, but it can be done.
 

NothingButLove

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Hey LizF,

My wife didn't get her tube placed until her FVC was 44%. She had already lost weight. I wish we would have gotten it earlier. On the plus side, the operation went as smooth as silk and recovery was super quick. There were no complications. She had her tube placed through interventional radiology. I know FVC doesn't tell the whole story but I think your doctor is right. At ~75%, it's time to start thinking about it.

One drawback to having the procedure early is just having to deal with a tube in your stomach. There's a certain amount of maintenance that needs to be done. Also, I don't know if this is normal but the doctors told us we first had to have a physical tube coming out of my wife's stomach. It's about 6" long and has a big port on the end of it. My wife likes me to tape it to her body when we're not using it so it doesn't snag on anything. The doctors gave my wife an appointment for 3 months after the operation to replace the external tube with a button. The button is just a port and isn't as cumbersome or visually noticeable as the tube.

Another potential drawback is the psychological effect. Every bit of news from your doctor or new piece of equipment drives home the fact you have ALS. The tube was a big deal for my wife. I could see it in her eyes. Her whole attitude has changed after the operation. When I get some time, I'm going to make a post about the psychological effect it's had on my wife. That said, my wife is very happy to have the tube. She would be on her way out if she didn't get it when she did.

As far as hastening the progression, I don't know. In my wife's case, she seemed to lose more of her voice after the operation. It's hard to say if it was just a coincidence and she was going to lose more of her voice anyway or not. I've seen people on the forum suggest that recovering from any trauma can hasten progression. That said, I think losing weight or choking is more of a danger and outweighs the possibility of hastened progression.

I would do it sometime between now and when you first notice the slightest problem swallowing. Don't wait until your choking and losing weight. Take care!

Rob
 

Scotiaspirit

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After I got my PEG, my PT and OT have said no to going in the pool! Before my surgery, the surgeon told me no problem, just put a tagaderm patch over the gastronomy hole. I loved the relaxation I got while being in a pool or jacuzzi, but feel bummed out not being able to immerse myself in a pool or jacuzzi. Any suggestions?
 

lgelb

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Re swimming, see this thread. Your PT and OT are being unnecessarily conservative.
 

affected

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Definitely no pool for the first 6 weeks or so, Scotiaspirit maybe that is what your OT and PT meant. Lots of children have PEGs and live very normal active sporting lives including swimming.
 

Scotiaspirit

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I definately will persue going to the pool and jacuzzi again. Thank you so much Igelb and affected. ☺
 

Jocalyn8

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I would recommend earlier than later. It helps with all the hi calorie supplements that taste bad, meds etc. Maintaining weight is critical, peg helps with that. Surgery wasn't too bad, and once you get Mikey button. Its easy. I swim with tagderm bandaid.

Jocalyn
 

LizF

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So, had another test and FVC is now 64%, I'm scheduled to have PEG tube placement done next week. I'll be hospitalized 3 days, and then hopefully no issues at home. I have no issues with swallowing, feeding myself, or weight loss, so can focus on healing and learning how to use it.

I found the actual PEG subforum (duh me) here, and have read it through, and want to say again THANK YOU to everyone who shared/shares experiences here.
My only unanswered question is if I can put alcohol through my tube? I don't like the taste of it but would like to relive my misspent youth by getting tipsy over Christmas. Just a thought... ;)
 
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