Getting a PEG next week - looking for tips

[jethro]

what is the average period from diagnosis to peg? my neuro wants me to make it, but i refuse cause i dont need it.

 

[Nikki J]

There is no set time from diagnosis to feeding tube need. It depends entirely on progression. The issues to look at - ability to swallow safely , the ability to take in enough to maintain weight, nutrition and hydration without being exhausted and breathing capacity. The last is important because the procedure is harder on you if you have impaired breathing. My sister delayed almost a year from when she was first told to get one. She freely admitted it was a mistake to wait

 

[nona]

I had my peg inserted a year after diagnosis but it's probably different for limb onset. I've had it for five years and it saved my life.

 

[JimInVA]

Jethro - As I've mentioned many times in other threads, Darcey was dead set against getting a PEG. When her neurologist said, "If you are going to get a PEG, you need to be doing that, now." We went home and talked about it with great seriousness. I first made it very clear that I would support whatever her decision was. I then acknowledged that if she did get the PEG, its use (or not) was entirely by her choice (only). I then gave my reason for asking that she consider getting the PEG. I admitted that it was a selfish ask on my part... but I didn't want that day to come when she couldn't swallow and I didn't have an easy means to give her medications.

So, Jethro, you're probably wondering how this answers your question. Darcey did agree to having the PEG placed with the promise and full understanding that it would only be used if and when she directed. Shortly after its insertion, Darcey's "ALS decline" leveled off from its previous sharp downward direction. It would be years before she'd use it other than for daily flushes. She really didn't notice it much. But for me, it was another chore to add to that daily list of things that needed to be done (flushes, cleaning the insertion point and changing the dressing). But when the time came that she both needed it and wanted to use it, we were both glad we'd made that earlier decision.

Looking back, I can't imagine how life would have been without the PEG... for either of us. When I begin to examine the possibility of what choosing NOT to have a PEG would have been, I turn away and find something else to think about. I'm glad she/we did the PEG (and, for us, it really was a "we") and would have hated to have waited too long for an easy insertion.

Jethro... and whomever else might read this... I hope you find something in our story that helps you make the choices that are most relevant and right for you.

My best...

Jim

 

[rmt]

Jim, you are an inspiration! I strive to be as caring and compassionate a caregiver and spouse as you.

Jethro - You sound like my husband last spring, in that you don't need it yet. My husband was adamant about not getting one, right up until it was a matter of life and death. Now that he has it, he seems very glad he has it. Luckily he has no other health issues, so as soon as he decided he was ready, he was able to get it done. That isn't always the case. I totally understand not getting a PEG until you either need it, or are reaching a point where it would be very hard to get it later. Personally, I would choose to get one early just so I could heal and know that it was available if I needed it (or just to make life easier). But of course, everybody gets to make their own decision on when it is time.

Once his swallowing became a serious problem, it certainly decreased our quality of life. He spent all day trying to eat, and he needed to be alone so he could focus on swallowing. He said he felt so alone all the time. So did I. Our entire existence revolved around him trying to eat and I was constantly terrified he was going to choke to death. It was a mess. He's had the tube for 3 days and wow, everything is back to the way it used to be! We watch sports together, we take walks (he's going crazy not being able to be active while he heals), we "eat" together. I wish we hadn't lost so much time while he was struggling to eat, but I'm so happy about how much better our time is going to be from now on!

 

[jethro]

@robin&jim thanks for (let's call it) colorful explanation. i must put some light on my problem: i was last time with my neuro and he suggested me "now it is best time to make peg" on 2/21. i refused hoping that i would die by summer, so what is a point? by end of april my swallow worsened and i couldnt drink liquids. i had diarhea, so i thought - that's it! body is a strange condo where we live: after severe problems with choking/being not able to swallow liquids, my clonus/subclonus/tremor/callithoweveryouwant, same as everynight's shiver, completely gone. dont know why. tried to investigate, no success. was it my language problem, terminology i used... cant say. at that time i found out about my insuline resistance, so despite no help from anyone, i decided to fight a final battle - against IR with accessible medications. at that time i noticed, by chance, that i don''t complaint on swallowing. it became like in 1/21. it took app month to back my swallow to (no, this is not a mistake) - pred diagnosis status. i eat and drink normally everything but apple vingar and spicy food. i mean, i can eat it also, but i dont choke, sometimes simpy - stucks. no swallow, cant inhakle/exhale... it doesnt have anything with swallow directly. my speech, same as all other als hallmarks worsen except swallow, which improved. i know, this is a temporary, but i can not afford cables, vents, lift etc. mentaly.
every pals states that peg is a great solution.
not for me.

 

[vltsra]

I think the decision to get a PEG is a personal one. When I first discussed this with the neurologist he told me "not everyone gets a PEG." My PALS asked me what I thought he should do, and I told him that most PALS get one. Now we use it most of the time for feeding. I notice that when I do feed him by mouth these days, he aspirates some of the food and I need to use the cough assist more. He does tell me that it is very hard not to eat anything normally. I had a discussion with him over the weekend about the potential for pneumonia, and only he can say what makes his quality of life acceptable.

Jim, I don't think this is necessarily a selfish ask. It is distressing to see my PALS struggle with food, and it is also distressing to use the cough assist for several sessions. It's distressing for him as well. For us it was the right decision.

V

 

[Fusia]

I agree with @vltsra and many others on this thread that getting a PEG is a personal decision. I wanted to provide my perspective on this topic, which I realize is different than that of most others… I have not been advised yet to get a PEG, I'm still able to chew and swallow effectively on my own. But, my thinking at this point is that I probably will not get one. The main issue for me is that I live alone, so any additional interventional devices/equipment (such as PEG, biPAP, cough assist) could require significant additional paid caregivers. While this sounds kind of like a cold financial calculation, it's more than that - to me, more outside caregivers could diminish my quality of life. While I realize it's very possible my thinking on this could change over time, at this point I'm strongly considering allowing the disease to run its natural course without any intervention and making use of Medical Aid In Dying at the appropriate time.

I know that I am an outlier, since most PALS have a spouse/partner/family member as primary caregiver. Dealing with these decisions and issues looks very different when you're facing them with a partner or loved one versus facing them with outside caregivers. I know from my experience as caregiver for my husband when he lived with Alzheimer's how important that bond is to quality of life.

 

[nona]

@Fusia , I have lived alone for almost the entirety of the disease, and for most of that time I've had the PEG and BIPAP. I have caregivers in and out and I'm alone overnight. It ain't awesome but I don't regret being around.

 

[Fusia]

Thanks, @nona, I've taken inspiration from you many times because you've managed well on your own for quite a long time, and you do it with such strength, grace, and positive attitude. I'm just not sure that I will be able to retain the positive outlook that you and many others on this forum display every day - I'm hoping so.

 

[GXTrex]

My dad just found yesterday he needs a G tube (is this different than a PEG)? I know this will help him in the long run so it is easier for him to get calories/nutrients, but he is still very upset about this even though we knew it was coming eventually. Do you guys have any advice?

 

[Nikki J]

Peg refers to to a method used to put a tube into the stomach. My clinic prefers the RIG method unless there is a reason not to ( anatomy). The end result is a Gtube. Advice? Do it. And check with Dr Harms about who he recommends to do it. If he is going to have it sooner is better. It is a tool to fight ALS but I know it feels like a loss remind him if he can swallow he can eat for fun and save energy by using the tube when eating is tiring

 

[affected]

For some strange reason the name PEG has stuck, even though truly Gtube is the correct name, or gastrostomy is the medical term and that is what the G in Gtube stands for. As Nikki says, peg is how it is placed (Percutaneous Endoscopy), while RIG is the other way they are placed (radiographically inserted).
Yet somehow we end up calling them a PEG (even our forum section is called PEG) and for PALS it is better to have it done as a RIG.
Hope that helps - definitely getting it done the earlier possible the better. The better condition the PALS is in, the better the recovery as a general rule (rather than emaciated and dehydrated). On top of that, getting the Gtube earlier means the PALS avoids losing weight and becoming dehydrated, both of which can speed progression and certainly reduce quality of life.
Hopefully you can help him see the benefits, and this as being a way of saying 'I'm in control of what I can be'.

 

[rnewton60]

I have Bulbar onset ALS and got a PEG early and easily the best decision I made. It took the pressure off of eating by mouth and gives you another option for getting calories. And Amen to those that talk about the pain. It is all relative for sure, but I was in severe pain for two to three days after this "minor surgery". It hurt like a mother for two and half days after they placed it. Take 800mgs of ibuprofen for at least two full days to knock the pain back. I also will mention I started using a fork to move food around in my mouth and went from 60% through the tube to almost 0% (except for laxatives). I have had the peg now for eight months and I am hardly using it.

 

[Ddd]

Thanks to everyone for your replies. My wife and I have been having discussions on if I should get a feeding tube too. These replies will be part of our considerations. Thanks! RMT, I hope everything goes well for your husband on this