I've feeding tube. I can't swallow food and liquid. 108 lbs.

Status
Not open for further replies.

Stella

Member
Joined
May 7, 2003
Messages
18
:shock: Today, when I awoke, I could not sit up. I was shocked and stressed because I always managed to get up and get dressed. My dietician told me last month, that 8 cans of liquid isocal were enough calories for each 24 hr period. But that is the only food my body gets. I cannot swallow food and I cannot swallow liquid. There are only 237 calories in each can of this nutrition liquid.

I was still only 108 lbs 2 weeks ago. 3 months, only 108 lbs. When I was so weak, this morning, at this low weight, I knew then, that 8 cans of isocal are not enough for me, during 24 hours periods, at only 108 pounds!
I was using a lot of energy, pushing the heavy feeding tube metal pole ahead of me, even three times during the nights, using the bathroom. When my daughter was home to lunch, she pushed the pole, and when she was home after supper, she pushed the pole.

Seven days now I have had a health care worker, hired for fourty hrs. a wk. I sleep only four hours a night bcause of pain in my right thigh, after I sleep 4 hours. I cannot sleep, much, anyway because of my septum. I cannot sleep on my back because my saliva would almost choke me. Losing an exreme amount of sleep, each night, is also causing me to lose weight.

WHERE CAN I BUY LIQUID NUTRITION FOR MY FEEDING TUBE THAT HAS MORE THAN 237 calories IN EACH CAN? PLease, I need an answer to this question. Losing sleep every night, is extremely stressful.

In our small hospital, not one person, knew enough about als. most of them do not know anything about als. Even a head nurse, thought when I walked , it would strengthen my muscles. the PT was going to SHOW me exercises TO PRACTISE, BELIEVING THAT WOULD STRENGTHEN MY MUSCLES! ?

WHEN SHE SAW HOW SKINNY I AM, SHE TOLD ME not to exercise. OF COURSE, I KNOW THAT EXERCISE CANNOT HELP A PERSON WITH ALS! I LEARNED ABOUT ALS AND NO WAY WILL I EVER EXERCISE, THAT WOULD DETERIORATE MY MUSCLES, FASTER.

I WAS DX MARCH 2003 WITH THE ALS BULBAR ONSET. THANKS TO GOD, MY BREATHING IS OKAY. PLEASE, ANY OF YOU READING THIS, WHO BELIEVE IN HOLY MASSES, ASK ALL PRIESTS YOU KNOW, TO PRAY FOR ME AND MY FAMILY DURING HOLY MASSES. I WATCH THOSE HOLY MASSES ON TV AND FROM MY VCR.

I say other prayers and I need others to pray for me.

THANKS TO YOU ALL

Stella

P. S.
I cannot use any other medication, ( because of side effects, ) than my thyroid pills.

But if the pain in my legs, during the night, gets worse, I will have to use pain killers. I do not know, why my legs , after four hours sleep, have painful spots in them. Only one night, last week , the pain did not happen. My sister had told me that she would pray for no pain to awaken me. That pain began tormenting me , during the night, over a year ago.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Hi Stella,

Long time no hear from. I am so glad you posted on the forum. It has been a long time since we heard from you. As I can see it has been a long and difficult time for you. It has been here too. Henry is still hanging on, with the grace of God, and we are so lucky to all be together still. It sounds like you have a problem with your calorie intake. Call your local health food store or pharmacy to see what other high calorie supplements there are for you. There has to be something better. We have to make you stronger! I will check out a few sites for you. Glad to hear that your girls are taking such good care of you. Isn't that wonderful that you have such nice family too. Anyway, sooo gooood to hear from you. Stay Strong, God Bless you, and to let you know, we still include you in our prayers, even though we didn't hear from you for so long.

Carol and Henry
 

Stella

Member
Joined
May 7, 2003
Messages
18
Thank you, Carol D

The dietician says that 8 cans of isocal is enough. We have a small hospital and no one here knows enough about als to help them, no one knows enough in all serious concerns about a patient with als


Yes, please see if you can find a liquid nutrition better than the amount of calories in Isocal. That liquid only has 237 calories in one can. The diet ician, has sort of orderedme to use only 8 cans in every 24 hours. This is difficult to live with and I believed my family dr, had wanted me to gain weight.

Please, pray for me and my family and the staff at our tiny hospital. I AM PRAYING VERY MUCH. I especially watch the Holy Masses, on Tv and from my VCR.

thank you

Stella.

If I become skinnier, I might get pneumonia.
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
Hi Stella:
The ALS clinics will also have some suggestions for you. If you need more calories see about getting access to some Nutrisource HN... we used to get it through our pharmacy.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Carol D.

Hi Stella,

I hope you have made some headway with your supplements. Henry still takes supplements everyday, however, he has still lost over 20 pounds since last December. It is the disease that is causing the weight loss. Henry still eats really good, and lots of calories in pie, cookies, and sweets, and good food, and he has still lost the weight.
All part and parcel of the als thing. I asked the Dr. and he said that this is normal. Weight loss is normal in als patients. So, increasing the calorie intake might help you to feel stronger, however, gain weight? I don't know. I have tried everything to fatten Henry up,. and nothing has worked. Keeping his nutrion level up is my main key. I hope that you can get something to work for you. I am going to our local Health Food Store today to check on some things for you. Wll post when I get home.
Talk to you soon. Stay Strong.

Carol xo
 

Timshelper

Distinguished member
Joined
Nov 11, 2003
Messages
154
Tube Feeding Supplements

Dear Stella :)
Hi my name is Kim and I have posted a few times in the last few years on the forum. I have a freind who has ALS but now I mostly just read what everyone has to say because I feel up to now I didn't have any input. I recently had a letter from Carol and she asked me why I never posted well now I feel like I can. There are two supplements you might be interested in trying one is called Jevity 1.5 which has 385 calories and the other is Nepro with 475 calories. Nepro is basically used for people that are on dialysis but I see no reason why you couldn't use this product also. Jevity comes in one flavor only while the Nepro has 3-4 flavors. Go to your local Pharmacy and they should be able to order this for you. I hope you will find this useful and the best of luck to you and I will be praying for you just like everyone else on this forum.
Kim ALS About Loving Someone :wink:
PS: if you have problems with your pahrmacy just type in the word Jevity and search and your website will come up where you can order on line.
 
Status
Not open for further replies.
Top