Help regarding tube feeding

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  • goffrey
    goffrey Member Posts: 42 Member
    #22
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    Real Food Blends is great if you supplement a bit. People just have to be aware that you need to supplement. I like that they have snack options to get extra calories in.

  • ali90h7
    ali90h7 Member Posts: 24 Member
    #23
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    https://csn.cancer.org/discussion/comment/1711346#Comment_1711346

    Hello Susan

    I am sorry to hear this news about your friend. Adjusting to a tracheostomy is a difficult and stressful matter indeed. It will not end with just getting out of surgery safely, as there are many complications and side effects that must be dealt with, and all of this requires a lot of effort, not to mention psychological adjustment to the whole thing.


    My father also suffered from edema after completing radiotherapy, but it has disappeared now. Indeed, I was very worried when it appeared. Frankly, at some point, you become confused about anything to worry about because of the large number of things a person suffers from. Also, the special tube is very important.


    It took my father a long time to adapt to the tracheostomy, and I also made a great effort with him in this regard until he was able to deal with it almost. It took me 9 months to get my father to touch the tube with his hands, and then gradually I trained him on how to clean it and how to reinstall it. Now the situation with it is fine. It is somewhat stable.

  • ali90h7
    ali90h7 Member Posts: 24 Member
    #24
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    https://csn.cancer.org/discussion/comment/1711348#Comment_1711348

    Hi goffrey

    Are you a user of both formulations?

  • Suez39
    Suez39 Member Posts: 162 Member
    #25
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    https://csn.cancer.org/discussion/comment/1711445#Comment_1711445

    Ali, wow took your dad such a long time to just touch the tube. But I can understand his fear completely. I did not have an issue touching it, but I was scared to death to change my tube. My ENT did not tell me to put an ointment on the outer tip of thev trach before I inserted it into my stoma. So when I put it in it was very uncomfortable for me not going in easily like it should. And I still have to learn how to put the trach strap on myself. That's not easy when you have to hold the trach in with one hand while doing it.

    I found a young lady who has a permanent trach tube but she is also hooked up to a ventilator cause of her condition. Her name is Ana and she puts out MANY YouTube videos about everything. She has been a HUGE help to me. I learned from one of her videos about Surgilube ointment. So now I got this ointment from my ENT.

    Try to look her up if you want. I think her address is analifewithavent. I dont have it exactly as my phone is on the charger now. You can Google trach videos or something like that then you might come across hers. She can answer your questions and help you with your dad. Before she got sick she was going to school to be a registered nurse. She is a bright lady. Hope this helps you.

  • Suez39
    Suez39 Member Posts: 162 Member
    #26
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    https://csn.cancer.org/discussion/comment/1711406#Comment_1711406

    Hi Logan. I remember your posts on here before they switched to the new format. I was surprised to hear from someone who is FT dependent like me, actually using formula. I have been on formula over 4 years also. And I've been experimenting with different formulas. It's a hassle for me as I also have a trach to maintain so I can just breathe. Not easy at all. And did not know we need 30 grams of fiber a day. Wow. I'm only getting 11.4 g of fiber a day for now. Was having bad constipation issues with not regular bowel movements. So my new dietician put me on new formula called Nestle Iosource 1.5. My stomach was not tolerating 4 cartons a day so she told me to do 3 and see how I do. But right now just want a formula that will make me have energy and not being so darn weak. Have a sensitive stomach which does not help me if course, But I have been reading everyone's posts and writing down good information that I will relay to my dietician next appt with her. Thank you for your post. Hopefully one day, my medical team will get me on the right track, cause I'm frustrated.

    Susan

  • wbcgaruss
    wbcgaruss Member Posts: 2,308 Member
    #27
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    Suz, I can help you out here...

    The lady Susan is talking about has several sources of help for those dealing with trachs or being on a ventilator and other medical advice. She has 2 YouTube channels. One channel is "Life With A Vent"


    Life with a Vent...

    https://www.youtube.com/c/LifewithaVent/featured



    Her Other channel is "God Is My Strength"

    https://www.youtube.com/c/godismystrength


    She is also on Facebook...

    https://www.facebook.com/profile.php?id=100076226040782


    She has an Instagram...

    https://www.instagram.com/lifewithavent/


    And lastly, she also has a MeWe page...

    https://mewe.com/join/lifewithaventilator

    As you can see she is very busy but always has time to answer a question or help anyone she can so if you have a ventilator or a trach question or just another medical question let her know she will be glad to help.

    Take Care, God Bless

    Russ

  • Suez39
    Suez39 Member Posts: 162 Member
    #28
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    https://csn.cancer.org/discussion/comment/1711396#Comment_1711396

    Thank you. I would hope my insurance would cover Liquid Hope. I dont have supplemental insurance just Medicare and Blue Choice Option. Something else I have to look into, but right now, my plate is full.

  • goffrey
    goffrey Member Posts: 42 Member
    #29
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    https://csn.cancer.org/discussion/comment/1711446#Comment_1711446

    I no longer have a feeding tube but when I did I used both and supplemented with high calorie Boost to help with weight gain. The real foods are so much easier on your system and better for you. Liquid Hope is good for actual meals and the Real Food Blends was good for snacks to get in more calories. They make snack packs that are great!

  • goffrey
    goffrey Member Posts: 42 Member
    #30
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    https://csn.cancer.org/discussion/comment/1711496#Comment_1711496

    I bought mine off of ebay due to insurance issues so it was not nearly as expensive as buying it directly through the vendors. You could see if your doctor would write a letter stating that you are not tolerating the formulas and see if that helps get it approved.

  • Logan51
    Logan51 Member Posts: 465 Member
    #31
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    Yep- getting it approved for Insurance is a hassle if you switch. My Dr. wanted me on only 1.2 Jevity.

    My last supply has caused an issue. They cannot get the Jevity 1.5 in 8oz. cartons. Instead, 1000oz. bottles that are used for drips. Between shaking, pouring into a container that works to pour into 16ML syringe, then refrigerating what I don't use...And for the life of me, this way it is so much thicker and I cannot help but notice the change in stool regularity. Am only doing the Boost VHC today in hopes of alleviating the constipation.

    Still monitoring my blood-oxygen, and because it's still in the 90s have not gotten the trache put in. Had one for 26 months when in my early-Teens: sterling silver, had to clean with peroxide and silver polish several times/day. Was no big deal to me, but I was young. Now they're plastic, I hear. Should be interesting.

  • Suez39
    Suez39 Member Posts: 162 Member
    #32
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    Hi Logan. Thx for sharing. What a pain in the butt you have to go through with your formula!! Cant stand when accompanies change things. Makes it harder for us to adjust.

    I was on Osmolite 1.5, and found out too late from my new RN nurse thier was absolutely NO fiber in it. She said that formula is widely used in the hospital I go to. So also have a new dietician who only had alittle trouble switching me to Nestle Iosource 1.5 with fiber. She had to get a doctor to give her a script, which my primary doctor was nice enough to do. I do have bowel movements now, but usually I go every 2 days. Which is not great. But a step forward from old formula. My dietician is monitoring me, cause I had to cut back to only 3 cartons a day now. I have not tried Boost to supplement cause I have a very sensitive stomach. I want very much to try Liquid Hope, but its up to my dietician who wants me to try new formula for awhile.

    As far as trachs go, I've had one in since May of 2019. Can help you with any questions you might have. I will try to make this brief. My old ENT who was the number 1 head doctor was trying to push me into getting a larenjectomy. But after alot of research and actually speaking to a lady who had one, I was petrified. She answered all my questions and I just could not go through with it. I can only wear the original trach they put in me. It's a Shiley uncuffed tube. Well, Shiley discontinued them. So I have been buying them online myself. Most companies want a doctor to order them ONLY. And get mailed to thier office. But I'm paying for it, so it's a huge hassle. I did find few companies that will sell them to me . My ENT told me all about metal ones. They lasted alot longer than plastic ones. I tried the replacement tube that Shiley changed to, but I was straining to breathe. Plus inner canula that you take out was soooo small in diameter compared to mine. Its depressing to live off of tubes, but it is what it is. I wish you the best of luck, and feel free to ask if you need help.

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