Feeding tube decision...

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Cherise77

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My Dad had a Respirologist appt and his FVC is now at 51%. They are pushing more for him to consider a feeding tube in the spring at his next appt. He’s very down about this as he feels this is the start of the end.

Other than his breathing and his right hand/arm his disease hasn’t progressed much anywhere else. Even his breathing I would consider very slow progressing as last summer 2019 his FVC was at 65% so it hasn’t dropped a significant amount in over a year.

My ask is if anyone has a positive story of getting a feeding tube I would really appreciate anything hopeful that I can pass on to my Dad to help him wrap his head around this decision.

Thank you
 

Nikki J

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My sister delayed almost too long. She was emaciated and her breathing was poor. She felt awful. She choked even though we prepared everything carefully and fed slowly. It took hours. It was distressing for us all and exhausting for whoever fed her. Feeding tube. Administration is a snap for the caregiver. No energy used for the PALS. My sister gained weight looked better felt better. Sole regret was waiting so long. I have promised to schedule mine the first time my neuro says I need it. It is quality of life for PALS and CALS. You can choose to stop using it if it comes to a point that you don’t want to continue
 

lgelb

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How is his swallowing? That is more important than the 51% FVC for the tube discussion, and calls for a modified diet if it's compromised.

The spring is a ways away so I wouldn't want him to go through winter dreading that time, and possibly eating/doing less out of depression, so I would say to him, OK, we can talk about it in the spring, see how your breathing and swallowing are then. But as Nikki says, at the same time you can say that even if at that point it's time for a tube, it's not the end, it's a change that will help preserve your energy.

The mind is powerful and if he thinks it's the end, it will be, whenever it is.

If his swallowing is still good, nothing is written. My husband was told by a pulmonologist that he needed a tube, a year and a half before he died. He didn't get one due to other complex conditions and ate a modified diet all the way through. I am not saying your dad won't need a tube in the spring, but I would try to ease his mind about it, as you are doing, and not let that anticipation dominate his life.
 

Nikki J

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I should have also added my sister lived more than 2 years following and traveled internationally several times as well as going out to various events regularly.
 

JimInVA

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My wife, Darcey, didn't want a feeding tube. She felt that if her life reached the point wherein she needed a feeding tube to stay alive, then her quality of life would likely be such that she'd rather be dead. Let me tell you right now, how wrong that viewpoint turned out to be for her. Our story follows...

Darcey's first undeniable "something is wrong" symptoms began in Nov 2012. She would not be correctly diagnosed (on our 2nd visit to Johns Hopkins) as having ALS until Apr 2014. In Sep 2014, her local neurologist suggested that she consider a PEG be inserted soon if she was going to have it done at all (due to lowering FVC numbers).

Darcey did not want a PEG. In fact, she was pretty adamant about not getting one. I told her that I'd respect whatever her wishes might ultimately be on the subject... but asked that she hear me out... for as her caregiver, I had some future concerns, too. My concern was that the day might come when she could no longer swallow and yet still needed medicines to be administered. If I didn't have the means to give her those medicines, I wouldn't be giving her the very best support that I could. I further said, even if at such a time she wanted to consider it time to call it as "End-Of-Life", medication to make her passing peaceful might not be able to easily be administered.

And so we both offered our own particular points of view to each other. By taking the time and making the effort to do so, we both were able to fully understand... and respect... the other's concerns and determinations. Accordingly, we were able to find an acceptable compromise. Darcey would get the PEG so that I could give her any medications that she might need and that she might want to take... when she could no longer do so by mouth. I was given the mechanism to provide medication but she retained the right to accept or deny any particular medication. I would not use it for any other purpose (food or drink), other than to perform routine water flushes (for proper tube maintenance), unless she specifically asked for it.

She had her PEG placed at the end of Oct 2014. A few months later, in Mar of 2015, Darcey's neurologist would inform her that he believed that "based on your history of declining FVC percentages, I believe that you are now within 6 months of your life's end." Darcey would smile at the doc and say, "I appreciate that... but I've still got things that I need to do... and 6 months isn't a long enough amount of time."

The PEG was a pain in the butt. Daily, we'd change out her 2x2 gauze pad and flush the tube. At every sling positioning, prior to actually lifting her with the hoyer lift, we'd have to make sure that the tube was out of the way and wouldn't get pulled. Darcey often commented on how she wished that she'd never given in to the idea of having it put in. That is... until she began to have difficulties with swallowing.

As it became more and more difficult to swallow liquids without aspirating, she'd instead take liquids via the PEG. As her quality of life was still good, she was now grateful for the option of using the PEG. Not much longer and she was unable to swallow anything at all... so food nourishment, liquids and medicines were all given via her PEG.

Darcey was unable to move the majority of her body parts. But she was still able to control her computer by voice command. This allowed her to write emails, engage with friends and social causes via Facebook and to open and watch movies and shows that were on Netflix and Amazon Prime. Her body may not have been able to move but her mind was sharp and her world was kept wide open. She was so very grateful for having the PEG and being able to continue living her life, day after day after day.

Darcey passed away last week... 6 years after having her PEG inserted... and 5-1/2 years after being told she likely only had 6 months left to live. What having the PEG inserted did for her was to give her a future choice. It did not hurry her towards deaths' door... but it did allow her to continue to live longer than she could have without it. My goal was always to make each of her days good enough that she'd want to wake back up that next morning. We took it a day at a time... and did so for nearly 8 good years. The PEG gave her control over her ALS... that she might live and die on her terms... not those of ALS. It should be noted that Darcey did not sit around waiting to die. Instead, she squeezed everything she could out of every day granted her to live. Her PEG helped facilitate that.

I hope that our story gives you and your Dad another perspective from two who have lived this. It is not meant to write your own stories... but to give you the insight to make better decisions, today, for life that is yet to be lived... for months and, perhaps, years.

My very best to you both...

Jim
 
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DaleJoni

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I too have a positive story for getting the PEG. My wife Joni suffers from Bulbar ALS along with frontotemporal dementia.

Her symptoms started with slightly slurred speech in early 2018. It progressively got worse, and by spring 2019 developed swallowing difficulty. Formally diagnosed summer 2019 and not long thereafter a PEG feeding tube was discussed. She was adamant against it from the start. Her swallowing got really bad and she lost a lot of weight. We gave up on food and focused on making very high calorie shakes. I would remind her every 5 minutes to sip a little so she could take in enough throughout the day. She gained 10 lbs initially but the swallowing got worse and 6 months months later lost the 10 she gained plus another 10. I asked her daily to reconsider the feeding tube to no avail. We would both spend all day, every day, trying to get calories in her and deal with constant choking from trying to drink the shakes. She finally consented when the doctors told us that she should be in hospice if she doesn’t get the tube. At that time she was less than 85 lbs (120 before ALS) but still had good breathing and use of all her arms, legs, etc.

We just had it done a week ago and she did very well with it. It has been a life changer (and life saver). She is happy with it and doesn’t even ask to drink shake orally. I wish we had gotten it earlier but I take what I can get. I had been concerned we waited too long but the doctors were very confident and it wasn’t a problem. She has 6-8 inches of tube that sticks into her pants and doesn’t bother her, and in 6 to 9 months we can get that replaced with a flat button if she wants.

Bottom line is this tube is a huge quality of life improvement. It doesn’t prevent her from any normal life activities, and is something that can be easily adapted to. I do wonder how much muscle mass she lost unnecessarily (and won’t get back) because we struggled with nutrition for so long.

Dale
 

Blackeyes

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Our story is very similar. Larry was against it. He won’t agree to anything invasive and believed the tube was just that. But Many people can live months even years with the tube and still be able to do many things and have an enjoyable life. There is no guidelines or timetables. It’s not a signal that the end is near it’s just another tool to keep them safe and as healthy as we can. There are many things he can no longer do or use the traditional way, the alternatives we’ve found Including the feeding tube keep him with us and give him some quality of life. He still refuses to be on a ventilator but is very happy he has the feeding tube.
 

Nick1439

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I'm 4 years into this, I just got my peg in August, my quality of life has improved immensely. It used to take 2 hours to eat and cough up anything I aspirated, choking down my coffee, coughing constantly, I didn't sleep.

got the tube, took a half hour, my stomach hurt because they had to inflate it to stretch it out and I had the usual post op soreness, I got a fever and felt like a bag of smashed assholes for the rest of the day. Figured it was just my body responding to the trauma of surgery. It was. My next issue was the formula, jevity is a no. Don't even try it, your PALS will not have a good time. It makes your saliva this weird simultaneously thick and thin mucus that you will choke on. I've been through 3-4 brands and have found that I prefer blended real food. I still have all of my favorite foods, coffee doesn't choke me, I don't cough all day, I actually sleep, I'm not miserable all the time, I'm gaining weight, I have energy, and probably a lot more.

the tube is good. it's not even close to the end.
 

nona

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I got my PEG over four years ago and I know it has extended my life. Not only is it easier to take in more calories and fluids, but medications too. It doesn't mean he has to stop eating by mouth, but it's a great option when a meal by mouth takes twice as long as it used to.
 

Firefighter58

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I had a tube put in about four years ago and it has been working fine, no problem at all. I still eat in the regular way but I take all my foul tasting meds and vitamins through the tube twice a day. I have no regrets in getting the peg, it was easy and with no pain at all. Iam now on my third tube and I have no complaints at all. I highly recommend this procedure if it is thought to do your dad good. I feel It really helps living with ALS.
Al
 

NorthernCalif

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My husband has had his feeding tube since September 11th... it’s been a Godsend... he’d been eating by mouth up to that point but with his swallowing problems he would have a hard time getting food and beverages down safely and he was losing weight ... after getting his feeding tube he continues to eat for pleasure... we are not worried about getting all the calories needed. We are now also using the feeding tube for his prescriptions... so much easier and safer! I’d highly recommend getting the feeding tube ... feel free to contact me if you have further questions... LeeAnn
 
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