Peg tube info. wanted, please [Archive]

BethU

04-15-2009, 08:53 PM

Hi, Greg ... welcome to the forum (but so sorry you had to join us).

I had a PEG tube put in about 2 months ago, and it has really helped my quality of life. My swallowing had become so bad, I was spending hours a day trying to choke down milkshakes, Ensure, etc. Now eating a meal is a 20-minute operation: I can get 1,500 calories and 60 gr. of protein with three "feedings" a day.

The tube is much smaller than I thought it would be (I pictured a garden hose!). The opening to the body is a little smaller than a belly button, and you attach a kind of funnel to the tube for the feeding. I am able to do the feedings myself, as I still have functioning in my hands. It's extremely easy to use.

My surgery was a little different than normal, as I also have heart disease, so my gastro guy had an anesthesiaologist (sp?) to knock me out quick, and bring me back quick. I think most implants are done under local anesthesia. The actual surgery itself was about 15 minutes. Went to hospital at 9 a.m. and was home by noon.

I still eat treats and drink Diet Cokes by mouth every day.

In case you couldn't tell, I am very pleased with the tube! It is one of the best "symptom managers" available to PALS.

BarryG

04-15-2009, 09:01 PM

Hi Greg and welcome! I had a peg tube "installed" (sorry for the terminology, I used to work in a truck repair shop) in February. After losing about 40 lbs I am happy to say that I have gained almost 11 lbs in 1 1/2 months. The operation was not really difficult and there was very little pain involved. After a few days of getting used to it it becomes very easy to take in enough calories without the effort involved with eating. I use a formula called Resource 2.0 made by Nestle which provides 500 calories and 20g of protein per 237 (8 US oz) box. I am still able to eat many things (very slowly) and supplement with the formula. The tube is also great for taking in water as well.

I was at first hesitant about getting a PEG tube but now I recommend it highly. It does make your life easier with very little effort. I hope this helps and if you have any specific questions ask away! Also like Joel said there are a lot of threads here about feeding tubes that you can search.

MarianneS

04-17-2009, 09:57 AM

Hello Greg, You must be a mind reader. I was going to post a similar question. My ALS clinicians are encouraging me to get a peg tube as well. I was dx last June with bulbar onset. I am having real trouble with the idea of the peg and would appreciate it if people could share their reasons for having one put in. My breathing is getting worse as well and I am definitely not going the ventilator route. Is there any reason then to get a peg? Also if you have one put in what if you want taken out? Is this a legal problem? I appreciate all the support and information that this forum provides, many thanks.

Tfisher

04-17-2009, 11:48 AM

This was also a good thing for my mom to get but she doesn't seem to want to take in what she actually needs as far as the formula and water. I don't know how to encourage more intake and the importance of it. I have also sent a few posts to her from here where people are discussing it but it doesn't seem to help. Maybe the current hospital stay will sink in.

thelma313

04-17-2009, 12:08 PM

Tfisher, is your Mom in the hospital? I hope she is okay and this motivates her to increase her intake. I'm sure you have told her about the importance of good nutrition. It is vital to proper organ function and overall health. Maintaining weight is the best way we know of to slow the progression. Tell your Mom we are all rooting for her! Please keep us updated and know that you are in my thoughts.

Tfisher

04-17-2009, 12:17 PM

Yes. My dad and I are sick so of course it eventually hit her. A lot tougher when you can't get a good cough going to clear things up.

thelma313

04-17-2009, 02:24 PM

I really hope she gets better soon!

kelly

04-17-2009, 09:50 PM

My husband had a peg "installed" in December. It has really taken so much stress out of meal time. He now eats purely for pleasure. He averages about 5-6 cans of formula a day .....plus lots of water. Today he had formula...ice cream sandwich..chicken..and mashed potatos! We are willing to answer any questions you have to take your fear out of the whole procedure.

jonsjr40

04-19-2009, 06:11 PM

Hi Greg hope everything is good im John iv'e had als for 18 years i had a peg tube for 3 years it was the best thing i did im 6 ft got down to 124 lbs now 173 lbs i dont eat by mouth any more at all but use to it.
GOD BLESS
John

danjay

04-19-2009, 08:06 PM

Hi - I'll just reinforce everyone else's remarks. I had my PEG tube "placed" (my doctor's term) last August. It was a life-saver.
Like BethU, my hands are still good enough that I can feed myself. The tube is easily maintained and just makes life so much
easier. I eat only when I want to, like tonight when my wife made a favorite, and a double-espresso every morning. I go through
5 cans of ensure and 2 of jevity 1.5 every day, plus I always blend up a can of soup in the evening to get some "normal"
food into me. Your routine changes but it just isn't a big deal. Just took a professional trip to Chicago and went to
dinner at a friend's house and got them to blend up some soup and I "ate" with the family. Sooner is better since as one's
weight drops and one's breathing gets weaker, placing it gets more risky.
I wish you the best
Dan

BethU

04-19-2009, 10:40 PM

Marianne ... I think the best reason to get a PEG is the instant improvement in one's quality of life. I love instant gratification, and we don't get much of that with ALS.

I would not worry about future decisions (to vent or not to vent) with other procedures. The PEG will give you increased strength and comfort just from being able to get adequate nutrition without a struggle. Maintaining one's weight is also known to slow the progression, so that's another real, concrete benefit.

I can't see a downside to it, except that you've got this little tube dangling from your midsection, but it can be tucked away very discretely.

Lorie

04-20-2009, 12:53 AM

Unfortunately my brother Tim had to opt for the PEG and Vent last July. We were just using the PEG for Meds. Next week he will start the Nutrition through it. His swallowing and speech is getting worse. He was Venting part time. He now has to go on it often. He gets breathless within a few minutes. You will now when it is time to Vent. We have been through it all now. He is going down hill. I will be glad to help with any questions.

Lorie

MarianneS

04-20-2009, 01:31 PM

Beth, Thanks for the encouragement. I was at an ALS symposium yesterday and learned quite a few things. I don't know where everyone lives or if they are baseball fans but one speaker said "That as Red Sox fans will never be beaten by a disease named after a Yankee! " He got a loud cheers, yes we are here in the Boston area. Marianne

lovinglife

05-26-2009, 01:17 AM

Hi Greg,
I'm just reading your post, but I really hope you listen to your doctors advice and go through with the peg tube. My mom just got one last month and I wish she would have gotten it earlier. I saw her at Christmas and didn't see her again until Easter and I was shocked by how much weight she had lost and how weak she was. Her doctor had advised her of getting on in Jan and she didn't listen. I think my mom postponing the tube cost her some range of motion. She was very weak, dehydrated and too skinny when I saw her. Since then I've made two additional visits and she is doing much better. Her color is back to normal and her energy level is way up. She was worried about how she would look with the peg, but it's not a big deal. She just makes sure she doesn't wear anything too clingy. Her peg was inserted about 4" above her belly button in the center of her ab. There is a small circular plastic plate the size of a milk cap with a tube coming out. My mom is unable to feed herself so she has about 6" of tube and we tape it down to her stomach. BE SURE TO GET THE GENTLE TAPE! And at the end of the tube there is a clip used to keep liquid from back flowing and a stopper at the end of the tube. I was a bit surprised when the doctor told us she would need 6 feedings day. I just assumed 3 like we eat, but they advised of not putting too much liquid in at once. Smaller meals are better (we are using 1 can of Ensure Plus per feeding 350calories) and she is getting 5 feedings a day. I heard there is an even higher concentrated formula for tube feedings, but I haven't found out what it is yet. Also we were able to get insurance to pay for the Ensure with a doctors prescription. It falls under durable medical supplies- so be sure to ask. It's tricky to get 6 in if you need to run an errand- it cuts one out. But we've been told of a pump that could be used in the evenings to administer 2 feedings (I'm still getting more info myself on that). It takes about 15 min. to do the feeding. She reclines back in her recliner and then sits for another 15-20 minutes after eatting to let the food settle. We have just started putting her meds through the tube. She just takes them twice a day and can swallow them- although she has developed an adverse taste to pudding and perfers them in the tube. My mom has high blood pressure and for some reason that pill is a bit more tricky so I'm going to ask a pharmacist about our options with that. It makes me nervous if there is reside left behind. Crushing and adding the medicines takes a little bit longer, but it's worth it to avoid the pudding. So far so good with the tube. There was a bit of an irritated area when she first got it under the circular cap, but that cleared up pretty quick with Lotrimun (sp?). I know she is glad to have it because she has so much more energy. It makes my stomach hurt to think how little she was eatting before. Take Care!

Jennifer51

05-26-2009, 05:14 AM

It sounds like the UK version of the peg feed is slightly different. I have not googled it yet but it is Nutricia . The feed is nutricia nutrison and the pump is Flocare infinity. The food comes in 1 litre bags and you start the pump off slowly to make sure you can tolerate the speed then increase it gradually. Day one of peg feeding in hospital was only 35 per hour, I am now up to 175, so the bag takes many hours to complete. A lot of people set it to run whilst they are asleep so set the hourly dose to allow for how long they normally sleep...an alarm sounds when it is finished plus you needto be slightly elevated. I dont like wires and tubes whilst I am asleep so have mine during the day. They supply a rucksack specifically made for all the gear, so it will hook on to a wheelchair for when you go out. In the uk all this is supplied and delivered free (providing you get an exemption certificate for prescriptions)

paulw

05-26-2009, 09:26 AM

Lovinglife;

We are using Jevity1.5 for my wife's feedings. It was prescribed by our dietician.

Paul W.

BarryG

05-26-2009, 10:15 AM

Lovinglife; as I said in my April 15 post in this thread I am using a product called Resource 2.0 which gives 480 calories in 237ml (8oz). It is made by Nestle. I don't know how available it is everywhere, I get it supplied and subsidized through a government program here.

BethU

05-26-2009, 01:04 PM

I'm using the Resource 2.0 following Barry's tip, and it makes life so much easier. My husband (a Parkie) has no appetite, and it is a struggle to get anything into him, even the liquid supplement, but that 500 calories really helps. So we both are living on it, with only a few "mouth treats" for me a day.

I order it online directly from Nestle. They offer free shipping and fill the orders really quickly. It's expensive (but they all are) but worth it.

cynds

06-05-2009, 09:55 AM

like marianne i am concerned about getting a peg. i recently had my most significant weight loss - 15 lbs in 3 months. my doctor wanted me to get it right away, but i asked for time to see if i could maintain my weight and weigh my options. i've maintained and gained 1/2 lb in two weeks. i'm 56, dx /72008 with bulbar onset (sick since 2005). i walk using a rollator in the house but use a wheelchair outside. i still eat most things and have minimal swallowing difficulty except with water and tea - i really miss those tall glasses of ice water and sweet southern-style iced tea! my manual dexterity isn't as good as it was, but i can still type 40 words a minute and write my name and feed myself. i use a bipap and my respiratory numbers have remained the same for nearly 0 months since i began using the bipap at night and 3-5 hrs. each day.

my doc has told me i will require 3-4 days hospital stay , which doesn't thrill me. i'm also concerned about anesthesia since i have a rather extreme reaction to it - i tend to go deeper and have a harder time waking up, even with local anesthesia. i've done some reading, and although peg is definitely recommended with better outcomes for most ALS patients, for those with bulbar onset there seems to be as many reasons both for and against using IV nutrition as there is for the peg. i don't intend to use a ventilator. i guess i'm more concerned with dying in the hospital - a very real risk, unfortunately - than i am with waiting and using IV maintenance later.

the responses to marianne were encouraging for the use of peg. what are the thoughts on peg with people with same type of history i have with bulbar onset?

thank you for your thoughts.

cynthia

cynds

06-05-2009, 10:00 AM

a couple additions/corrections to my post (i said i could type 40 words, but didn't say they were all spelled correctly! :-) . . .

dx 7/2008

my respiratory numbers have remained the same for nearly 9 months

my swallowing is good, but my speaking ability is failing quickly. it remained pretty stable for about 6 months, but in the past two months it's become difficult for even my partner and my aide to understand me.

i think everything else was correct - i hope!

cynthia

BethU

06-05-2009, 12:23 PM

cynthia ... I have bulbar onset and heart disease and do not respond well to anesthesia. Had a previous bad experience with the guy who did the PEG. During a routine colonoscopy they gave me too much fluids and threw me into cardiac arrest. Not the doctor's fault ... he's guite top-notch.

ANYWAY ... he said he wanted complete control over my breathing during the PEG implant, and worked with an anestheologist to put me under for the shortest time. Don't know what they used, but they used something that put me under instantly and also brought me out instantly. There was no twilight sleep, no gradual waking up. I could 't have been out more than 5 minutes, and it all went perfectly.

Normally my doc doesn't use an anestheologist (sp??) but as I said, he wanted me under complete control during procedure.

Explain your situation FULLY to the surgeon. Doctors don't want problems any more than patients do.

I am soooooooooooooo grateful for my peg. No way I could keep my weight up without it. I'm 73, by the way, and have had previous heart attack, so not an ideal candidate for any surgery, no matter how minor.

BarryG

06-05-2009, 01:00 PM

Cynthia, I'll add my vote to Beth's for having anesthesiologist when your peg is put in. When I had my peg put in they tried once the normal way with just sedatives and my breathing was not good so they reversed it and tried again the next day with a general anesthetic. That worked and I had no breathing problems, the anesthesiologist talked to me before and told me that if I had breathing problems he would look after me. My neurologist told me (afterward :roll:) that she thinks that ALS patients don't react well to the normal sedatives that they use for PEG placement procedures. Of course it costs more to have an anesthesiologist present, there seemed to be twice as many people in the room on the second day, so there may be a reluctance on the part of the doctors and the hospital to do it that way but if you are concerned I would recommend pushing for it. I was much more aware the second day after the general than the first day after the sedatives.

Like Beth, I can't imagine not having the tube now as it is very difficult to eat and I can't drink anything out of a glass or bottle. In the year before I got my peg I lost almost 40 lbs (160 down to 120) and since I got it I've gained 10 lbs back and have a lot more energy.

danjay

06-06-2009, 10:22 AM

Cynthia - I'm with Beth and Barry. Had a general for the surgery as my vital capacity was below 50%. I was also told that
ALS patients can react poorly to anasthetics. They didn't even
ask about it but wanted to be in control of my breathing. Surgery went easily and I also am so very very glad I did it. Have
gained back about 20 pounds and am just holding it here as it is a good weight for me. I had dropped from 175 down to
127 and am now at about 150.
Best of luck
Dan

serenade

06-07-2009, 07:17 PM

My doctor wants me to get a peg next month everyone has answered most of the questions except one.
My question is can you swim or go in a hot tub with one? Which is part of my daily routine.

Tich1

06-09-2009, 05:26 AM

Hello , I have just joined this morning and the first thread I want to look at is this one because I have been asked to think about having a PEG very soon . I am really scared at the thought of the procedure but know I need one as I am losing weight and no managing to swallow enough food and especially drink . I have asthma and can't think about the procedure without thinking I won't be able to breath .
I have ALS MND that was diagnosed in March 2009 , after I started to have speech and swallow problems in January 2009 .
I now have a lightwriter SL40 to speak for me when I can't .

BethU

06-09-2009, 12:25 PM

Tich1 ... welcome to the forum ... but I'm sorry you had to seek us out.

The PEG will make an enormous difference in your comfort and quality of life ... and quantity of life, too! Being able to keep your weight up is vital, my neuro told me.

The procedure is very fast ... probably only 5 to 10 minutes. Talk to your doctor/surgeon and explain your asthma and your concerns. I'm sure they will know how to control your breathing while you're under. Many times, the procedure is done with only local anesthesia, too, so that may be a better option.

Good luck.

cynds

06-13-2009, 12:18 PM

thanks to everyone for your responses and info. what are the options besides peg? are there any? believe me when i say i am in no hurry to die. nonetheless, i can't help wondering about measuring quality of life. i realize everyone's measurements are different. i live with a wonderful man who is devoted to my well-being, but still i watch him everyday as the disease takes a bite of him and it makes my life less fulfilling. my family is spread out over three states, none of them this one. they are attentive and visit as often as they can - wonderful, happy visits - but the time in between visits is so lonely. having a healthy, active mind trapped inside a dysfunctional body is becoming harder and harder for me to deal with and i wonder about major life decisions like the peg and whether it really does add quality.

yes, i realize i'm sounding a bit depressed today. being a psychologist is understand the importance of mental health care along with all the other health care we require. i have a very good therapist i meet with at least once a week. it just seems like all are decisions are such difficult decisions. i would appreciate any input.

thank you,
cynthia

bulbar onset 2005 - dx als 7/2008

Tich1

06-13-2009, 01:41 PM

Thank you for your reply Bethu , as I now weigh 85 pounds , or 39 kilos , due to my swallow problem and aspirating fluids .
I have a chest infection at present which isn't helping my breathing . I do need a PEG , as you rightly say , for my well being and to gain weight . It's being awake during it that may pose a big problem if I have panic breathing as the tube I'm supposed to swallow approaches .
I feel that if I was put under a brief general anaesthetic at least the anaesthetist would have a better control over my breathing than I would . I am so scared when I think about being awake :-(

BethU

06-13-2009, 01:44 PM

Cynth ... as far as quality of life with a PEG, and this is just my own experience, the PEG is not even an annoyance. I am completely unaware of it most of the time, until my feedings.

A spoonful of yogurt by mouth will leave me regurgitating and choking for many minutes sometimes. Much of the time, I cannot get the food to go down to my stomach at all. Halfway down, it surges back up into my mouth, and drools or spits out (I have no lip seal, so can't keep food in my mouth without physically holding it there with a napkin, or pressing something against the chin bone under my lower lip. That's a handy tip to remember if you decide against the PEG. You can fake out your lips with pressure at that point.)

Also, I cannot move food around in my mouth with my tongue any more, so must constantly stick my fingers in my mouth to reposition food for chewing, etc. It is like being an infant in a high chair learning to eat solid food. Most of it goes somewhere else.

If I had to eat by mouth, I would be dead by now of starvation. Literally, I think. I doubt if I could get down more than 200-300 calories a day, if that. And each spoonful would be a battle. (I still do try to eat a treat by mouth every day to keep my mouth happy, and it takes me an hour and a pile of napkins and several handwashings to eat one soft cookie.)

For me, the PEG was a no-brainer, but each of us has a different mind-set and different attitudes toward our bodies and must choose what is within our comfort zones. I can only say that to me it is a life-saver, physically and psychologically. Until you've been there, you can't imagine what it's like literally not being able to eat. The PEG makes all the difference between my being fairly active and productive as I still am vs. spending my days in exhausting struggles just to get nutrition into my body.

----------------

Tich ... I understand exactly what you mean. They knocked me out for it, too, and it really helped. Hope you get that chest infection cleared up quickly.

Tich1

06-13-2009, 02:21 PM

Oh Bethu sweetie , reading how you are with food and drink is soooo familiar , that's exactly what happens to me too , dozens of swallows once it hits the back of the throat , and still dribbling out into tissues , whilst coughing relentlessly . Also , my tongue won't move food around anymore , I eat what I can in custard consistancy , and add Thick and Easy to my fluids , but still find it hard and have to hold my lips closed with a napkin . I'm mostly on my own too and aorry at times that I am choking my last breath !
I have lots of medications to take too , crushed into orange juice ....what fun . With a PEG I could put them down the tube crushed into fluid of some kind . xxx

hopeful warrior

06-21-2009, 08:07 PM

Hi, all! We just wanted to check in and tell you how the PEG tube "insertion" went. Greg is on a non-invasive vent at night. The dr. had us bring it with us to the hospital. There was an anesthesiologist in the procedure as well as a representative from WalGreens home care to monitor the vent.

The procedure went very well. The first week was somewhat difficult for Greg. However, as the tenderness subsided and wound healed, he came right along.

We purchased a Vita-Mix blender after reading of them on Joel C.'s post. It is fabulous! Greg had vienna sausages through the tube this evening. He was pretty excited!

Thank you for making him feel so comforted regarding this life altering decision. It was definately the thing for him to do. He feels so much better. He's even sleeping better. Our uninvited advice is "Get the PEG tube when you are able." It is really a great thing.

joelc

06-21-2009, 10:21 PM

Thanks for sharing a positive experience! I am very glad it went well, I am also happy to hear you love your Vita-Mix as much as we do! They are absolutely wonderful.

topsfan

06-23-2009, 05:47 AM

Hi Everyone, I've read all of your posts with great interest as my soon to be 71 yr old mother with ALS is considering a PEG. We've been teasing her about what all we will feed her when she gets it. There is some apprehension as we are all unfamiliar with the procedure and some anxiety over how she will do with the procedure. She is also concerned about bathroom habits following a feeding. As someone who had her gall bladder out years ago, she already struggles with a sudden and seemingly uncontrollable need for the bathroom after eating and is concerned that if the food is fed directly to the stomach that the time between feeding and the bathroom will be faster yet.
I'm reading here the procedure has been as simple as outpatient, and yet with others a 3-4 day hospital stay. Is that a difference in doctor philosophy or patient condition or both?

As always, your input is appreciated.

Mary

BethU

06-23-2009, 12:56 PM

Mary ... I think the stay in the hospital depends on the patient's condition and the doctor's caution. Some patients have twilight sleep, some are knocked out, and sometimes hospitals may keep a patient to make sure everything's OK. Because I have had a heart attack, they knocked me out quickly and brought me back within a few minutes to keep control of my breathing. Still, mine was an outpatient procedure, and I was home by noon.

About the bathroom needs. I assume you are talking about bm's. Both my husband and I find that the liquid supplements cause some constipation. If that's the issue, your mom might find that going on a liquid diet solves her urgency problems.

When I have a clog in the feeding tube, I administer my feeding standing in the bathroom, clearing it by pouring a little Coke in the tube, emptying it out in the sink, etc. Usually I finish those feedings standing in the bathroom by the sink like the Statue of Liberty holding the tube up in the air for gravity to empty it. Your mother could also easily take the feeding seated in the bathroom, or lying in bed (propped up at about 30%) with a commode nearby.

It's not an all-at-once procedure. First you undo the clamps on the tube (very easy), insert a feeder tube and pour some water in. Then you pour in your supplements or pulverized food or meds. A can of Ensure usually takes about three or four tube fulls. Then you pour in more water to clean it out and clamp it up again. So you could help your mother get all set with the feeder tube attached, and she could pour in the food in private seated in the bathroom if she prefers, or on a commode in the bedroom.

It's not an intrusive or embarrasing procedure at all. I do it fully dressed. The tube is an inch or so higher than my belly button, to the left. It's much smaller than I expected and light. Easy to reach and easy to handle.

I'm 73, so your mother's age should not be a factor in adjusting to the PEG. It will simplify her life enormously, and help her stay strong. It really is a life-saver.

hopeful warrior

06-23-2009, 05:13 PM

Mary

My husband stayed in the hospital overnight for two reasons.
1) his breathing is "compromised" and is on a vent at night
2) we live three hours from the dr. and a trauma center hospital

It worked out the best for us. I'm sure the doctor will share with you their preferred procedure but you do have choices.

Phil M

06-23-2009, 05:17 PM

Some really good information in this thread. Thanks! I am getting a peg in a month, or so. I'm actually looking forward to it!

BarryG

06-23-2009, 06:23 PM

I had a four day hospital stay when I had my peg put in in February. There were a couple of reasons for this with the main one being that, like hopeful warrior, we live a three hour drive from the hospital ad the doctors wanted to keep an eye on me. Also, the gastroenterologist who put it in had to do the full anesthetic route on a second day because I reacted badly to the sedatives the first time they tried. A third reason for my long stay was totally bureaucratic, the hospital realized that once they put the tube in they didn't have anyone to show me how to use it because it was a long weekend.

I have only been using my tube for formula and haven't really noticed any difference in my bathroom needs so there has been no problem in that regard. I do all of my feeds in a chair in the living room with a towel on my lap to catch any spills or drips. I have a water
bottle for before and after the formula and haven't had any clogs or problems with the tube. Anyway, the benefits FAR outweigh any inconvenience because after all, if you can't eat nothing else matters very much.

Barry

danjay

06-23-2009, 07:25 PM

I stayed overnight in the hospital. That was the doctor's standard practice, to be sure we were properly trained to use the PEG. Beyond that my experience is as all the others have described, it's no big deal and has been a lifesaver. The only other issue that I think about is that I intend to last long enough to need to have the tube replaced. Depending on the kind of tube used I am told that they can last several years. I am curious what experience others have had with this. Did you opt to go through the whole deal again, or get one that's inserted through the opening with an inflated bulb?
thanks and
Best to all
Dan

joelc

06-23-2009, 08:27 PM

Interesting questions.
When I got my PEG it was a 5 minute, painless procedure. I was awake for the whole thing and I was amazed at how easy it was.

I had my first one in for over a year and a half. I wanted a Mic-Key for my second one so went that route. (We had to purchase it for $250.00). The doctor pulled out the first one with a "pop" and put the Mic-Key in. Took about 2 minutes. But we found the Mic-Key to be a real nuisance as it was always getting plugged up.
It was nice in that it did not have a tube attached, it was detachable.
Very quickly the balloon that holds it in developed a leak, this was 2 weeks after putting it in. I could not afford another $250.00 so for $40.00 we put a different kind in that has a short tube connected. This is turned out to be a good decision, no more clogging a it has lasted.
It will need to be changed every 6 to 9 months.We do it at home, takes 2 minutes.

donarden

06-23-2009, 09:23 PM

My husband had a PEG put in place just 11 days ago. He looked like a ghost when he went in the hospital, two days later his color was already improving. The fact that I can do his feeding in 10 or 15 minutes is great. He used to spend up to an hour trying to choke down milk shakes, Ensure and his medication.

Tich1

06-24-2009, 01:33 PM

Reading these replies regarding peoples PEGS is very helpful . I'm just getting over a chest infection probably from aspirating , and donarden , your husband taking an hour to choke down a drink and meds is just me too . I have loads of meds to dissolve in juice and
have Fresubin to drink as well as trying to drink other fluids and eat . I still manage custard consistancy foods but now they feel as though they are swallowed up in my nose , and drink comes down my nose at times . You all may have experiences these problems already so excuse me for talking about them , I am finding new things out about this disease . I don't know how to clean my teeth better as I can't rinse out . The PEG nurse is coming to see me so I'll ask her if they can knock me out completely til it's over . x

BarryG

06-24-2009, 03:52 PM

Tich1, I know exactly what you're talking about, my eating and drinking experience exactly. And it is hard to keep your mouth clean when you can't rinse so something I did was to install a bar type faucet which has a tall spout so that I can get my mouth down under the spout and let the water run through my mouth to rinse. I am still mobile so I can bend over and do this and I can also get a drink that way too. I think that because I am bent over the water goes down the right way and I don't choke (much). Also because I am over the sink I also don't have to worry about spillage. And as for the peg, ask what your options are but my vote is for being "out" with an anesthetist on hand for your safety.

Barry

danjay

06-24-2009, 05:31 PM

Thanks Joel for the answer. When I still felt shy about the lump under my shirt I thought the button type might be cool but basic and reliable is more on my mind now. Am only ten months into it now. Had to replace the fitting on the end, but that is very easy. My tube remains in good shape. Thanks again.
Dan

Tich1

06-24-2009, 05:53 PM

Thank you for your post Barry , it's so good to talk about these things with people who know exactly what you mean and how you feel .
It's funny to see the state of my clothes when I have had a drink , perhaps I should eat and drink in the shower ...lol .
My dogs have a good time stood underneath me , I'm sure they think it's christmas ! x

MarianneS

06-25-2009, 10:02 AM

In an earlier post on this thread I was asking about the PEG tube, pros and cons. It has been good reading people's responses. Although my doctor has been encouraging me to get one I have decided agaist it. Has anyone on the forum made this decision? I just cannot find a way to accept it. My mother who was dx at 86 didn't get one either. This is not the reason I am saying no, I'm ony 54 I think it would have been too much for her at that age. My husband agrees with me, although he says it is my decision. My breathing is going down and I am not going on a ventilator and so I don't know what a feeding tube will accomplish. Sorry this a bit rambling but I've been agonizing over this for a while and have finally mad the decision.

Marianne

thelma313

06-25-2009, 10:39 AM

Marianne, do you have a Bipap? My father's breathing was going down too and then he got a Bipap and a PEG tube and he is doing better! Much better! His FVC has stabilized at 49% and he has gained 13 pounds back. He has more energy and is enjoying life. You are only 54 and of course your decisions are yours to make but just know that you could very well improve your quality of life and comfort with a couple of simple non-invasive aids. Something to think about?

I wish you all the very best and know that you are supported here in whatever decisions you make.

MarianneS

06-25-2009, 10:50 AM

I don't have a Bipap yet. The clinic presribed one for nighttime and a company contacted me. They said the rental was $600.00 per month and my insurance didn't cover it. I go back to the clinic in August and will try and find a different rental company, my husband ha a Cpap and has never paid a dime for rental in ten years, or buy one. Thanks for your input. Do you think I am making the wrong decision?

Tfisher

06-25-2009, 11:41 AM

MarianneS,
I'm with Thelma313, my mom was going down hill fast before she got her feeding tube. She fell several times which included staples in her head twice and was just getting too weak, she couldn't get up out of a chair by herself. Since her feeding tube last November she feels better, her weight has stablilzed and it has been an improvement in many ways including the ability to get up and move about the house on her own again. My mom was not looking forward to the procedure and neither was I but she is glad now that she went through with it (She just turned 80 and had a margarita down the tube, salted rim of course!).

Can't the ALS clinic help to get that bipap covered for you?

Good luck!

BarryG

06-25-2009, 12:21 PM

Hi MarianneS, I got my peg tube in February of this year and I know that I would be dead from starvation by now without it. There is no question in my mind about it. In the summer of 2007 I weighed about 160 lbs (not a lot for a 5'11 man) and by the time I got my peg tube I was 117 lbs. I was living on borrowed time with no energy to do anything. Since my tube I have gained 11 lbs back and I now have the energy to do things (like get out of bed) again. I wouldn't wish starvation on anyone. We are very close in age as I will be 54 in a couple of weeks and I know that I want to get very old before I die. But this is about you, not me. As you and others here have said, it is your decision because it is your life but unless a person is a hermit all of our decisions affect others. Don't deprive your family of some important memories because you've decided that there is no point. Like Glen says "I'm not ready yet"

Barry

DgtofTNfan

06-25-2009, 03:10 PM

Marianne,
I don't think it is for anyone to say that you are not making the right decision. We all have the right to self-determination and how we want to live our life. We can only relate our experiences or those of the ones we love.

I can tell you my Dad was resistant to handicapped parking placard, feeding tube, bipap, suction machine, manual wheelchair, speech device, power wheelchair and home modifications. He has been fighting the loss of his independence to this disease bit by bit. At intervals he comes to a decision about how he wants to proceed and we help him.

My Dad has bulbar onset ALS. The feeding tube and the bipap machine so far have been the most halting interventions to the disease progression.

Before the placement of his feeding tube in Feb of this year, he was literally wasting away before our eyes. He had some trouble tolerating his tube feeds at first but at the moment his weight has stabilized and he has more energy. I don't believe he would be here today without the feeding tube.

The first night the bipap machine was delivered, he looked at it and looked away. It sat in the corner all night. Within a couple of nights he was tolerating it for 4-5 hours and self reported a big difference on how he felt during the day. He now can't sleep without it.

He has drawn the line at living with a vent. Maybe he will change his mind and maybe he wont. Whatever he decides, it is his life thus his decision.

I wish you the best in whatever you decide is best for you.
Dana

thelma313

06-25-2009, 05:02 PM

Dana, that was so well said and exactly what I would have written. Marianne, my Dad and Dana's Dad are very similar in that my father has also resisted every one of the items and procedures that Dana listed.

Today he had an appointment with his pulmonologist who is thrilled that my Dad's FVC has stabilized at 49% and his breathing is very good. My father has also opted not to vent but we shall see when we reach that phase.

Of course, just like everyone has said, the decision is ultimately yours to make but the overwhelming majority of PALS who got the PEG highly recommend it.

MarianneS

06-26-2009, 02:49 PM

Thank you all for your input and encouragement. I'm glad this forum exists to provide insight and support from others in the same unfortunate situation.

Marianne

BethU

06-26-2009, 03:16 PM

Marianne ... I absolutely respect your right to make the best decision that is right for you. Sometimes we tend to pressure people to make the same decisions we have made for ourselves, and I find that that is not helpful. We will all be here for you no matter what decisions you make. As Barry says, we're all in this together.

I only want to point out one thing logistically on the PEG, for others who may be considering it. Doctors usually suggest procedures before we absolutely need to have them done, because as we weaken, there are more problems with performing the procedure itself (i.e., sedation, recovery time, etc.)

To PALS who don't have problems swallowing, it may seem that doctors recommend it too early. But for those of us who reach that stage, trying to get nutrition becomes a difficult day-long struggle, with choking, aspiration, regurgitation with every bite or swallow. Even with ALS, our bodies want to live and they beg for food. The PEG effortlessly extends our lives. According to my neuro, statistics show that patients who do not lose body weight not only live longer, but also stay strong and active longer. Maintaining body weight is even more successful than Rilutek in prolonging strength and life.

Basically, it's a quality of life issue plus a quantity of life issue!

Tich1

07-12-2009, 11:07 AM

Hi all , I just wanted to update you . I am having a PEG put in next week , after they've done blood tests , blood gases , and a respiratory function test . They say they don't do general anaesthetics for PEG ops at my hospital , just sedation and local . So I'm dreading it , but know I'm at the stage where I need it . xx

thelma313

07-12-2009, 11:43 AM

Tich, good luck! Keep us updated. You made the right decision. I will be thinking of you... I know it's easy for me to say (I've never had a PEG tube put in) but my Dad did it under a local anaesthesia and he said it was totally totally painless. He felt a little sore later but that's it. The procedure is very fast. Maybe ask the doctor if it is okay for you to wear headphones if you think that is something that would help. Some hospitals allow patients under local anaesthesia to wear their iPods or MP3 players. You could listen to your favourite music to distract and comfort you. Anyway I think this is a good thing and I am hoping you gain lots of weight! I know you will feel better and have more energy. :)

BarryG

07-12-2009, 11:56 AM

Tich, I am so glad for your decision. It really is short-term pain (and there really isn't much pain) for long-term gain. My peg has helped me immensely and I know that it will for you too. Good luck and please let us know how you are doing.

Barry

DgtofTNfan

07-12-2009, 11:58 AM

Tich1 - good luck with your testing and the PEG placement next week. My Dad was sedated for his and the procedure only took about 20 minutes. He was sore the first day and the soreness lessened and was gone after several days. If it were me, I would be dreading it too but seeing how well my Dad is doing now, I think you will be truly glad you got it over with.

Dana

Tich1

07-12-2009, 11:58 AM

Hi Thelma honey , thank you so much for your support . I've been losing weight so it's important for me to get some calories down me . I was weighed 3 days ago and have lost another 3 kilos . I've been told I'll be in for a few days to be shown how to use it as I live on my own . I'll keep you up to date . What a help this wonderful site is , everyone is so freindly and understanding :-)

Teresa xxx

Tich1

07-12-2009, 12:00 PM

Thank you Barry and DgtofTNfan :-) xxxx

thelma313

07-12-2009, 12:22 PM

You're very welcome, Teresa. Take extra special care of yourself!

GlenBrittle

07-12-2009, 04:05 PM

I have been quietly , YES QUIETLY , following this thread. It is of great interest to me as I have decided to go ahead with the PEG , even though I do not need it yet.

There are many kinds of these ? That's a question for my doc that I had not thought of.

Marianne , search out STU , a member of this site ( SMillheiser ), who might be able to help you with the BiPAP issue.

Glen

BarryG

07-12-2009, 04:28 PM

Glen, great decision, the best time to get a peg is before you need it and before you start to lose weight.

I don't know about different kinds of tubes, mine is about 1/4" in diameter and 12" long (but size doesn't matter does it :D) with a cap on the end. To use it I just kink the tube, open the cap, insert the 60ml syringe barrel, pour in one syringe full of water and then my formula. Once all the formula is in I flush with a couple of syringe fulls of water, kink the tube and tuck it back inside my shirt and I've had my food and drink till next time. It only takes a few minutes rather than the hours it takes me to chew and swallow regular food.