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View Diary: Update: "That is when the Transplant Coordinator Nurse told me that they are Republicans." (143 comments)

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  •  Compliance.... (1+ / 0-)
    Recommended by:
    Horace Boothroyd III

    With any very serious chronic condition, the medical regimes for treatment can be very complex and require a higher degree of organization on the part of the patient.  Therefore, many factors are considered including family support, living situations, history of compliance with past medical programs.

    In giving life skill training and support classes to newly diagnosed HIV patients, "compliance" with all aspects of care is stressed as being one of the most critical components of success.  Medications taken on time, prescriptions filled, financial assistance programs kept current on supporting documentation... all requiring a high degree of functioning stability on the part of the patient.

    I'm not saying it was correct for UNMC to assume that gender identity issues for the patient would compromise sie's ability to be compliant with all aspects of after care.  It was however correct of them to consider ALL aspects of the patient's life that might affect their ability to maintain a complicated and expensive post transplant regime. This might include being in the midst of divorce or custody disputes, being estranged from extended family, being homeless, being disconnected from reality due to various mental conditions.... transplants are expensive with not enough available to meet demands so the bar for qualifying is high.  You can't just say you need it so you should get it.

    •  "Compliance" (2+ / 0-)
      Recommended by:
      Horace Boothroyd III, Silina

      can be tricky for both sides.
      My spouse had gastric bypass in 2011. Among the things that were STRONGLY implied that she would never be able to do:
      1. Eating something with sugar causes "dumping".(She has occasionally indulged in a forbidden dessert with no such effect.)
      2. Steak and roast meat would be almost impossible to digest(No problems)
      3.Cruciferous veggies, same problem(No problems)
      4. Encouraged to drink unsweetened fruit juices(Loaded with natural sugar,she does not like them, anyways)
      Many other misrepresentations by everyone from the surgeon, to the nurses, to the dieticians, convinced both of us that she would not return to ANY of the follow-ups.
      OTOH, being a now disabled RN, she is aware of the truth re not ever taking n-saids for pain ever again due  to the now limited stomach lining being damaged.
      Considered non-compliant: probably.
      But she has lost over 130 lbs. in a year and a half, and continues to lose at a rate far slower than Biggest Loser"norms" (?)

      •  Congratulations to you both... (2+ / 0-)
        Recommended by:
        Horace Boothroyd III, Silina

        Losing weight in any amount is hard work and losing that much is life changing.  I had weight loss surgery also, in 2003.  At first I was super compliant so much so that a group of gal pals, other WLS patients, ragged on me (with love) about being such a goodie goodie and NEVER cheating.  Of course that couldn't last forever.  It wasn't brain surgery.  I did begin to regain some weight after four or five years.

        Things changed again, I began taking a medication that changed how things tasted.  Nothing tasted the same, or as good as it used to.  Everything was too salty, too strong, too garlicky, and I began to eat plainer and simpler things.  Also slowed down the frequency of meals and found I was just naturally migrating back to the early WLS habits from when I was compliant.

        I now realize, I still dump on sugar I had just learned to tolerate it, even got a little buzzed.  Feels a little like a strong heavy Indica.  Now sweet just doesn't taste good so I keep a piece of really good bakery cake around and eat one or two bites if I get a sweet tooth before bed.  One piece of good cake lasts a week or more.

        I still can get "stuck" if I eat too fast, even steamed and somewhat soft veggies.  Raw veggies?  A few bites and only very tender and well chewed.

        I haven't eaten roast steak or roast meats for over 45 years anyway.  I still like chicken but now I'm picky about the quality and if I can't afford local and good stuff I skip it.  And dark meat is easier to handle.  White meat will get me stuck every time and it hurts.  You can breath but not much else.

        Juice, a thing of the past unless it's carrot.  Too intense.  A reaction that isn't even mildly like a buzz.  It's like I NEED A NAP, mind if I lay down right here?

        I'm beginning to lose weight again and doing more of the chores on my own. Today I brought in three wheelbarrow loads of firewood from the barn to the house and fed eight bales of hay to the girls.  I also cleaned up the house, unloaded all the market coolers from the car then used to car to go pick up two live turkeys, my turkeys that had been at a friend's place.  

        In spite of being a hybrid now and in spite of the bumps in the road, I lost a lot of weight, gained a little back, and am now losing again.  I'm still much healthier and active.  All the tools that the surgery gave me, still work, if I follow the guidelines and stay "compliant".

        •  She had (0+ / 0-)

          to lose the weight to get a THIRD spinal fusion. Her back after two surgeries, is almost totally unstable.
          And thank you for your good insights and fine thoughts.

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