need encouragement

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jim and i
jim and i Member Posts: 1,788 Member
I am so afraid and scared this morning. Jim still is nauseaous and very week. He had a hard time walking from the car to the house yesterday after tratment. Doc says he needs more calories but he can't tolerate any more than 4 cans of osmolite. That is only 1200 calories. He is 6'2" and down to 159. I am afraid he is going to die from malnutrition.
Please pray for his strength and ability to keep more calories down.

Debbie
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  • Jan Trinks
    Jan Trinks Member Posts: 477
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    Prayers Coming Your Way
    Debbie:

    Will have you and Jim in my prayers. I know how tough it is to watch your husband not being able to eat and losing weight. God Bless!

    Jan (Basketcase)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    PEG
    If he isn't able or willing to take in more calories, and you or he feel that the nutrition and calorie intake is something you can't get a handle on or manage, it might be time to look into getting a PEG. I can't remember, but presume he doesn't have one already.

    Although Ensure Plus will give you another 150 calories (at 350/can), and add a few sliced peaches in light syrup will add a few more. That's primarily what I survived on for nearly seven weeks.

    If it's just a matter of not tolerating a few more cans is that just his feeling or his body can't ingest anymore.....you do what you have to do to survive, that's the bottom line.

    Best,
    John
  • CLRRN
    CLRRN Member Posts: 127
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    Calories
    Hi Debbie,

    I completely understand your fears and frustration. Mike is 6'2 and started out at 283 and lost 63# (with a PEG). They wanted him to have at least 2000 calories per day and like your husband, it's hard getting in so many cans per day.

    Not sure if you've explored IV fluids-that will help with the hyrdration part. It's easier for them to infuse fluids into the veins then taking in orally/PEG. That's one suggestion that will help.

    Regarding the calories-we used Benecalorie (made by Nestle). There are 330 calories in 1.5 oz and you can add to whatever he is drinking/taking in my tube. Our nutritionist made the suggestion and it helped get in extra calories without all the volume.

    Hope this helps!!!

    Chris
  • arndog64
    arndog64 Member Posts: 537
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    CLRRN said:

    Calories
    Hi Debbie,

    I completely understand your fears and frustration. Mike is 6'2 and started out at 283 and lost 63# (with a PEG). They wanted him to have at least 2000 calories per day and like your husband, it's hard getting in so many cans per day.

    Not sure if you've explored IV fluids-that will help with the hyrdration part. It's easier for them to infuse fluids into the veins then taking in orally/PEG. That's one suggestion that will help.

    Regarding the calories-we used Benecalorie (made by Nestle). There are 330 calories in 1.5 oz and you can add to whatever he is drinking/taking in my tube. Our nutritionist made the suggestion and it helped get in extra calories without all the volume.

    Hope this helps!!!

    Chris

    I can totally relate to your
    I can totally relate to your fears of malnutrition. My husband was having one milkshake a day sometimes every other day. I tried to get him to drink ensure plus and he hated them and refused to drink them. He kept loosing weight and muscle mass, I finally had enough and told them I wanted the peg tube and he was 4 weeks out from treatment. He is still loosing a little but no where near the amount he was loosing prior to the peg.
  • palmyrafan
    palmyrafan Member Posts: 396
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    Prayers
    Debbie,

    Sending prayers for Jim that he continues to have the strength he needs for his treatment and that he will be able to hold down more food and gain the calories he needs to continue.

    Prayers for you too!

    Teresa
  • Toni08
    Toni08 Member Posts: 39
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    Prayers
    Hi Debbie, I know there are others who got less in and still did ok. Our bodies are sometimes stronger than we think! My dad had this same problem and lost 60 lbs in a few weeks. I'm not sure which my dad was on, but the doctors said he needed to get 7 cans in (by peg) and this was just too much with nausea for him to handle. They then gave him a different kind that packed more calories per can so that he would only need a total of 5 cans to get his required daily intake. You should ask your doctors about this. Many prayers coming your way.
  • jim and i
    jim and i Member Posts: 1,788 Member
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    Skiffin16 said:

    PEG
    If he isn't able or willing to take in more calories, and you or he feel that the nutrition and calorie intake is something you can't get a handle on or manage, it might be time to look into getting a PEG. I can't remember, but presume he doesn't have one already.

    Although Ensure Plus will give you another 150 calories (at 350/can), and add a few sliced peaches in light syrup will add a few more. That's primarily what I survived on for nearly seven weeks.

    If it's just a matter of not tolerating a few more cans is that just his feeling or his body can't ingest anymore.....you do what you have to do to survive, that's the bottom line.

    Best,
    John

    has peg
    Jim has a peg. He just can't tolerate a large volume without getting naseaous since he was in hospital. The nutricianist changed him to osmolite which has 355 calories per can but only able to tolerate 4 cans which is no where near the calories he needs. His hydration is good. He is able to drink 6-8 oz of water at a time where before he could only sip and did not get even ;4 0z down. I am going to try and increase his nausea meds and stagger the doses between the two. maybe that will help. Thanks for the imput.

    Blessings
    Debbie
  • jim and i
    jim and i Member Posts: 1,788 Member
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    Toni08 said:

    Prayers
    Hi Debbie, I know there are others who got less in and still did ok. Our bodies are sometimes stronger than we think! My dad had this same problem and lost 60 lbs in a few weeks. I'm not sure which my dad was on, but the doctors said he needed to get 7 cans in (by peg) and this was just too much with nausea for him to handle. They then gave him a different kind that packed more calories per can so that he would only need a total of 5 cans to get his required daily intake. You should ask your doctors about this. Many prayers coming your way.

    Thanks for the prayers
    The nutricianist is suppose to call today to see how he is tolerating the 4 cans. I will ask her about a higher calorie supplement. I have a 565 cal carnation instant breakfast that I was supplementing with before he was hospitalized. I will ask if he could possibly use some of that as an added calorie.

    Thanks everyone for the prayers.

    Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Toni08 said:

    Prayers
    Hi Debbie, I know there are others who got less in and still did ok. Our bodies are sometimes stronger than we think! My dad had this same problem and lost 60 lbs in a few weeks. I'm not sure which my dad was on, but the doctors said he needed to get 7 cans in (by peg) and this was just too much with nausea for him to handle. They then gave him a different kind that packed more calories per can so that he would only need a total of 5 cans to get his required daily intake. You should ask your doctors about this. Many prayers coming your way.

    I understand what you mean
    I understand what you mean about not being able to tolerate more cans of food. One of the things you can do, if he has a peg tube, is to get a pump, or a gravity feeding bag for overnight. Even if you only put in two cans, and set the ml per hour drip rate to 63, that should be easily tolerable, that would take 8 hrs and give him 750 more calories if you are using 1.5 per ml food. Nutrition while you sleep. It really couldn't be easier to get more cals than that way.

    I was very ill and lost 40 pounds even with my peg tube. Was down to 87 pounds. The pump and overnight feeding was a life saver.

    Also carnation makes something called HVC and is 560 calories a can.
  • rozaroo
    rozaroo Member Posts: 665
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    Toni08 said:

    Prayers
    Hi Debbie, I know there are others who got less in and still did ok. Our bodies are sometimes stronger than we think! My dad had this same problem and lost 60 lbs in a few weeks. I'm not sure which my dad was on, but the doctors said he needed to get 7 cans in (by peg) and this was just too much with nausea for him to handle. They then gave him a different kind that packed more calories per can so that he would only need a total of 5 cans to get his required daily intake. You should ask your doctors about this. Many prayers coming your way.

    Debbie!
    I had the same problem & slowed the pump down for my feeding's. Also had to take medication as nothing was staying down. Projectile vomiting at least once or twice a day. I am happy to hear your hubby can drink so much water. I found that lying in bed after feeding made me feel worse so I tried to move about a bit more. I dreaded the feeding's so much as I knew what was coming. Anxiety attack's as I was used to doing thing's & hated sitting still. Eventually thing's improved it just took it's sweet time.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    I understand what you mean
    I understand what you mean about not being able to tolerate more cans of food. One of the things you can do, if he has a peg tube, is to get a pump, or a gravity feeding bag for overnight. Even if you only put in two cans, and set the ml per hour drip rate to 63, that should be easily tolerable, that would take 8 hrs and give him 750 more calories if you are using 1.5 per ml food. Nutrition while you sleep. It really couldn't be easier to get more cals than that way.

    I was very ill and lost 40 pounds even with my peg tube. Was down to 87 pounds. The pump and overnight feeding was a life saver.

    Also carnation makes something called HVC and is 560 calories a can.

    Ok. We were posting at the
    Ok. We were posting at the same time. I see that you know about the carnation 560 cal. I really encourage you to get a pump, or at least get them to give you a few gravity bags to try out, and set the drip rate slow. He may be hooked up for a while, which is a pain, but it's better than starving to death. This works, trust me. I would slowly increase my drip rate and add more calories overnight. I gained 10 pounds. I got to the point I would do 4-5 cans at night and set it at about 155 mls per hour. He can use the pump day or night. I was just so thin, and needed so many calories, that for a while I was connected day and night.

    If he has the four cans during the day, then the two at night, he should stop losing.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    jim and i said:

    has peg
    Jim has a peg. He just can't tolerate a large volume without getting naseaous since he was in hospital. The nutricianist changed him to osmolite which has 355 calories per can but only able to tolerate 4 cans which is no where near the calories he needs. His hydration is good. He is able to drink 6-8 oz of water at a time where before he could only sip and did not get even ;4 0z down. I am going to try and increase his nausea meds and stagger the doses between the two. maybe that will help. Thanks for the imput.

    Blessings
    Debbie

    Four Cans
    Even at four cans and 1420 calories, it's not much, but more than likely he can survive on that. His metabolism is slowed more than likely from not being able to do much to burn calories, other than needed for healing and recovery.

    As Dawn and Roz mention below about the pump and slower feeding times will definitely help. I can't offer anything concerning that as I had no pump.

    While I'm not endorsing toughing it out, he can sustain on the minimal calories, or at least I did...losing a pound or so a day during that time and dropping about 45# down from 270. So with my added weight it wasn't an issue of me wasting away.

    If you can get the added calories in though, even better...I had virtually very little energy during those times. It's best to have as much to fight and recover as you can.

    Best,
    John
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    PRAYERS HEADED YOUR WAY
    Prayers and positive thoughts coming your way. I know it is tough, I have been there as I lost 77 lbs. Start with the 4 cans, and try for part of a 5th can, then try for a little more.

    Every little bit helps.

    Best!!

    Mike
  • jim and i
    jim and i Member Posts: 1,788 Member
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    Ok. We were posting at the
    Ok. We were posting at the same time. I see that you know about the carnation 560 cal. I really encourage you to get a pump, or at least get them to give you a few gravity bags to try out, and set the drip rate slow. He may be hooked up for a while, which is a pain, but it's better than starving to death. This works, trust me. I would slowly increase my drip rate and add more calories overnight. I gained 10 pounds. I got to the point I would do 4-5 cans at night and set it at about 155 mls per hour. He can use the pump day or night. I was just so thin, and needed so many calories, that for a while I was connected day and night.

    If he has the four cans during the day, then the two at night, he should stop losing.

    He has the pump and it takes
    He has the pump and it takes almost 24 hours for the 4 cans[they have him on 24 hour feedings] I had upped the drip to 81 on Sunday and I think that was the problem, so the nutritionist said to drop back to 60 for a couple of days and then we will slowly increase. He was up to 7 cans a day before the dehydration and chemo put him in the hospital. He had started to gain a little weight on the 7 cans plus extra calories through his tube. I guess we need to be patient but it is scarry to see a once muscular and active man down to nothing but bones. It doesn't help when his daughtes keep questioning the doctors capability of keeping him nurished. One is clear across the country and the other suffers from anxiety and panic attacks so they are not coping well.
    Sorry to run on. Thanks for the help and encouragement.

    Debbie
  • jim and i
    jim and i Member Posts: 1,788 Member
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    rozaroo said:

    Debbie!
    I had the same problem & slowed the pump down for my feeding's. Also had to take medication as nothing was staying down. Projectile vomiting at least once or twice a day. I am happy to hear your hubby can drink so much water. I found that lying in bed after feeding made me feel worse so I tried to move about a bit more. I dreaded the feeding's so much as I knew what was coming. Anxiety attack's as I was used to doing thing's & hated sitting still. Eventually thing's improved it just took it's sweet time.

    Yeah, Jim is parinoid that
    Yeah, Jim is parinoid that every thing will make him sick. He will not take pills because one hung in his throat half the day and he will not drink prune juice because that made him sick. Milk of Mag and prune juice was keeping him regular. I even offered to put it through the peg and he said NO! Prune Juice was the first thing to come up when the dehydration hit.
  • jim and i
    jim and i Member Posts: 1,788 Member
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    PRAYERS HEADED YOUR WAY
    Prayers and positive thoughts coming your way. I know it is tough, I have been there as I lost 77 lbs. Start with the 4 cans, and try for part of a 5th can, then try for a little more.

    Every little bit helps.

    Best!!

    Mike

    Thanks Mike, the prayers
    Thanks Mike, the prayers help. Good advice. We got ahead of ourselves trying to rush the weight gain. Jim is so stressed about losing more weight that he weighs 3 times a day. He is also sick and tired of being sick and tired, LOL.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    jim and i said:

    He has the pump and it takes
    He has the pump and it takes almost 24 hours for the 4 cans[they have him on 24 hour feedings] I had upped the drip to 81 on Sunday and I think that was the problem, so the nutritionist said to drop back to 60 for a couple of days and then we will slowly increase. He was up to 7 cans a day before the dehydration and chemo put him in the hospital. He had started to gain a little weight on the 7 cans plus extra calories through his tube. I guess we need to be patient but it is scarry to see a once muscular and active man down to nothing but bones. It doesn't help when his daughtes keep questioning the doctors capability of keeping him nurished. One is clear across the country and the other suffers from anxiety and panic attacks so they are not coping well.
    Sorry to run on. Thanks for the help and encouragement.

    Debbie

    Then definitely drop it back
    Then definitely drop it back down to 60. I used to dissolve my pills in water and just put them through the tube. Can't you just dump it in there, and fix the feeding for him, he'd never know. Not like he can taste it. :)
  • DrMary
    DrMary Member Posts: 531 Member
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    jim and i said:

    Thanks Mike, the prayers
    Thanks Mike, the prayers help. Good advice. We got ahead of ourselves trying to rush the weight gain. Jim is so stressed about losing more weight that he weighs 3 times a day. He is also sick and tired of being sick and tired, LOL.

    We were there
    Doug lost about 40 lbs (he's about 5'10" and started out at about 180) and it did get scary. For a long time, we had to be satisfied with watching the weight loss slow and then stop. I think it took many weeks before we saw any gain.

    It's hard to watch, but folks can lose a lot of weight and come back. At some point I was pushing too much food on Doug and neither one of us was happy - I dialed it back a bit and he eventually started to gain, although I suspect most days the food went in by his will power alone. He still naps more than he ever used to, but that's a huge improvement from spending most of his time in bed - I know it's hard to be tired all the time, but it will also slowly get better.
  • Greg53
    Greg53 Member Posts: 849
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    DrMary said:

    We were there
    Doug lost about 40 lbs (he's about 5'10" and started out at about 180) and it did get scary. For a long time, we had to be satisfied with watching the weight loss slow and then stop. I think it took many weeks before we saw any gain.

    It's hard to watch, but folks can lose a lot of weight and come back. At some point I was pushing too much food on Doug and neither one of us was happy - I dialed it back a bit and he eventually started to gain, although I suspect most days the food went in by his will power alone. He still naps more than he ever used to, but that's a huge improvement from spending most of his time in bed - I know it's hard to be tired all the time, but it will also slowly get better.

    Lost 65#
    It scared the bejeebees outta my wife too. I'm 5-11 and went from 215 to 150. I used the PEG but was throwing up continuously for a 4 week period. Mine was caused by the ropey phelgm. (Wish I had heard about the suction machine then - take note of that newbies, if you have that issue). That's when I lost a majority of my weight. I know it's scary but several here have lost a lot of weight.

    Hoping Jim is past the worst of it and it gets better from here on out.

    Sending positive thoughts and energy your way!

    Greg
  • Pam M
    Pam M Member Posts: 2,196
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    You're InMy Thoughts
    Like many here, I lost a lot of weight during treatment, even with a PEG. Luckily for me, I was like Skiffin, and started out with extra. The ONE time it was good to be overweight. Also like Skiffin, I never had to use a pump or do feedings overnight. Obvious question, but do you have the head of his bed propped up?