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Read and learn what happens when you don't comply with DS lifestyle requirements

Discussion in 'Duodenal Switch' started by Elizabeth N., Jul 5, 2014.

  1.  
    Elizabeth N.

    Elizabeth N. Herder of cats

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    A DSer on a FB group very kindly granted permission to post this VERY important cautionary tale about what can (probably WILL) happen to a noncompliant DSer. This is not the author's story, but that of a family member.
    "(A family member) had this surgery about 16 years ago. he wasn't good about keeping up with information and never supplemented properly. His laundry list of health issues is so long, he's lucky to be alive.
    He developed osteoporosis at about five years i...n, which was detected when he had a seizure and broke his back the first time. The osteoporosis in his spine is so bad now, that he's had several back surgeries and broken his spine multiple times. He now has a permanent pain pump implanted, and is stooped very badly and has to use a walker.
    His endocrinologist said that my dad had the lowest levels of D he'd ever seen. They were almost negligible.
    He's also dealt with leg weeping and sores due to low blood albumin (too little protein), and low blood salt, among other things. I'm sure he's deficient in just about everything. Honestly, he's very lucky to be alive at this point, and one bad fall could kill him.
    He's better about supplementing calcium and vitamin D now, but that's about it. He still doesn't take care of himself well.
    That's my cautionary tale to everyone. This surgery WILL ruin your life and possibly kill you if you do not take/eat what you are supposed to, no ifs, ands or buts."
     
  2.  
    Walter Albert

    Walter Albert Member

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    my endocrist has me taking 100k v d per week, its hard to get the level up. I get tested every 3 months
     
  3.  
    Larra

    Larra Well-Known Member

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    EN, thank you for posting this sad story. Being MO can kill you, but so can the treatment for being MO. All of us MUST educate ourselves, and sometimes our doctors, to make the risks of going through surgery worth it. This guys life is no way to live.

    And Walter, come on! You've been around this group, here and elsewhere, forever. No matter what your endocrinologist "has you taking", YOU know better! You will never get your levels up on that amount, and testing every 3 months won't improve them either, it will only show you how badly you're doing. You fought so hard and waited so long for your DS, too. Most of us take at least 50,000 units of D daily. Some of us, myself included, find that even that isn't enough to maintain adequate levels of D and keep our PTH normal. I can't say for sure exactly how much D you need, but I'm confident that it's at least 50,000 per day. I'm on 100,000 per day now and it has made a huge improvement in my PTH level. If I have to take that much for the rest of my life, I will.
    Get with the program, Walter! You won't regret it, but you may have big and permanent regrets if you don't.
     
    kcgt, heyclementine, conceit and 4 others like this.
  4.  
    Elizabeth N.

    Elizabeth N. Herder of cats

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    You're wasting your breath, Larra.
     
    Anna72915 and Spiky Bugger like this.
  5.  
    Larra

    Larra Well-Known Member

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    You may be right EN, but it was worth a shot. Besides, you never know who else might read that post and think that if an endo recommended that piss poor dose, it must be true, and I don't want anyone to make that mistake.
     
  6.  
    Walter Albert

    Walter Albert Member

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    I need to find a new endcrist as this guy is leaving nyu this week, that's what he RX, I will bring this up with a new one when I pick one out, shopping in nnj for one.
     
  7.  
    Walter Albert

    Walter Albert Member

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    Checked my may test. It was 24.7. Insufficient. On a normal scale of 30-80
    I sent Dr Lind a request to up my rx . this was a improvement over February of 17.2.
    Bone osmolity in February was 300. Over the normal range?
     
  8.  
    Walter Albert

    Walter Albert Member

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    I will seek out a OTC vitamin d and calcium
    Recommended?
     
  9.  
    southernlady

    southernlady Administrator Staff Member

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    kcgt, Jbandmmomma and Spiky Bugger like this.
  10.  
    Walter Albert

    Walter Albert Member

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    Walter Albert

    Walter Albert Member

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    Few more pills to my $35k annual drug habit
    Lol
     
  12.  
    Larra

    Larra Well-Known Member

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    Walter, don't wait for the new endo to make his or her recommendations. Your D is way too low. Get going on this NOW. And I bet you don't even know what your PTH is and why it's so important.
    If the new endo doesn't know about the DS and how severely we malabsorb D, it's your responsibility to educate him/her. It's your health that's at risk here, not the doc's. It's you who will suffer if you let yourself become crippled by listening to advice that you surely know by now is not well educated advice. Remember how many doctors you went through before you found the one who would do your DS? Well, if you have to go through the same number of endocrinologists, that's what you do.
    When you chose the DS, you chose the best possible opportunity to restore your health. Not everyone gets this opportunity. Along with this opportunity comes some obligations, and one of the most important obligations we have is to take the right vitamins and supplements in the right amounts and the right forms to maintain our nutritional health. You have the advantage of being part of this wonderful group of well informed people who have reached out to you to help you. Take advantage of all the information and experience we have here to take proper care of yourself. Don't count on some other person, not even a doctor, to do it all for you. No one cares more about your future health than you.
     
  13.  
    Sheanie

    Sheanie Well-Known Member

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    Walter, Walter, Walter. Holy Effing Hell. 100,000 per WEEK of D? Seriously? More like PER DAY, and then 150,000 isn't out of the ordinary for someone trying to raise a very low vitamin D level. About the only thing your endo has correct is retesting you every 3 months.

    PLEASE wise up, Walter.
     
  14.  
    Walter Albert

    Walter Albert Member

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    Work in progress. Found some endocrine. Specialist who also dose nutrition and are.tied in with the lead
    bariactric
    sturgeon in northern Nj. I will. reach out to them tomorrow.
    This may be reason for why part of my incision is still. Open and weeping after 33 days.
     
    Last edited: Jul 6, 2014
  15.  
    Spiky Bugger

    Spiky Bugger Well-Known Member

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    Walter, I get my blood tested and then *I* decide how much (currently, 150,000 IUs per DAY and I live in the sunny southwest and get in the pool every day) Vitamin D to take. My current, but about to be ex- because we moved) PCP just says, "Well, that much would be dangerous for someone with normal absorption, but I guess it's working for you." He will speak up if it gets too high.

    Like Larra said, you have to know better than that. You do not need PERMISSION to take as much Vitamin D as you need.

    And, I get the feeling that you wait for the doctors to prescribe stuff so that one of your many insurances will cover the cost. As in, yes, you USE $35k worth of drugs, but I'd bet your copay is next to nothing. (I could be wrong, but I've seen your approach to paying for this stuff out of pocket for years now and you are very stubborn about getting your money's worth out of insurance companies.) When you are diagnosed with osteoporosis and your teeth start falling out, you might think that $20/mo worth of Vit D would have been a bargain.
     
    Last edited: Apr 7, 2017
    conceit, marissamast, clpeltz and 3 others like this.

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