15 years out and can't find decent follow up care!

Thank you for your reply, JazzyOne.  You are fortunate to have found a PCP amenable to learning about your care.  You make a very good point about having to be our own advocates, and you offer good advice for doing so, with which I completely concur, especially for new postop DSers.  For 15 years, I have done exactly as you suggest.  I have taken the lead in my follow-up care.  I am far from an introvert when it comes to dealing with doctors.  My knowledge of the procedure and its sequelae is extensive.  I can tell my doctor the tests I need; however, my problem lies in finding a physician who has experience in interpreting blood work results in a DS patient, and who knows what is needed to remedy multiple deficiencies.

I live in a tiny, rural community where my PCP has no staff; it's a one-man operation.  I'm disabled, but have made lengthy, difficult trips to bariatric centers where the staff showed obvious resistance (and even impatience and resentment) to my attempts to educate them about the unique needs of DS patients.  They are simply closed to being educated about a procedure that is not routinely done, and they want me to fit into their way of doing things, regardless of whether it is appropriate to my needs.  I can't tell you how many times over the years I have heard, "this is how we do it here."

Unless we are blessed with a PCP like you have found, we are pretty much out there on our own.  Good luck and continued success on your postop journey.

Jazzy, you bring up a good point.  Before this surgery, my thoughts on retirement included Montana or Idaho - in a rural area with farm land everywhere and a quite pace of life, a simpler life.  After surgery, I realize I need to be in/very near a metropolitan area with major hospital and a Hematologist nearby.  As we age, things start to slide down hill and this surgery can make that process faster/nastier than usual.

Victoria, can you see a Hematologist nearby?  That would be the expert I would go to for lab analysis and deficiencies, and combine it with a young dietician who is open to learning the DS.  Between the two of them, they should be able to help with deficiencies and infusions.

Hello again jashley.  So far, my hematologist is willing to deal with the anemia issues, but refers me on regarding vitamins/minerals.  I'll talk to him again on my next visit and see if he'll expand his scope.  Looking for a dietician/nutritionist as you describe.  Wish me luck!

Thanks for the education on the Hema not dealing with other vits/mineral deficiencies. 

jashley-

The downhill slide with regard to the DS can happen sooner rather than later, at any age.  The key to preventing it is being able to convince your DS medical team that you really know what you're talking about.

I've found that if after my thorough mini-seminar, whi*****ludes handouts on the DS still leaves them with that deer in the headlights look, I simply say "short gut syndrome".  99.9 percent of the time, once I say that, the light bulb in their little heads goes off, and I have no problem getting the concept across. 

The genetic anatomical defect of short gut almost exactly duplicates the absorption issues that are present in the DS, and the nutritional profile/guidelines and treatment protocol are nearly identical to what DSer's have to do on a daily basis.  My hemo has been a little harder to budge, but I think that's more of a cultural barrier than anything else.

If you really NEED help you have to be the squeaky wheel and just don't give up.  A doc at a major medical center would be a good bet and hopefully one who is younger.  Honestly, your issue is pretty normal.  We have to be able to do our own research and know what we need.  We can't wait for them to tell us what to do, we have to research ourselves.  Someday there may be expert followup for seniors but not today.  There aren't enough of us to be profitable in any one area.  And even if there were dos who specialized in bariatric patients, they would be up to date on the RNY, not the DS.  You would still be given RNY information.

JMHO but the patches look promising and since they are absorbed through the skin, no issues with malabsorbtion.  I would try them for 6 months along with the oral stuff and then have labs done to see if it works.  Try patchmd.com and look for a promo code.  You can usually find one for 40% off.

Just for the rest of the people reading this, not all of us are medicalized for life.  I have never had infusions/hemotologists, endocrinologists, etc.  Some have issues and others don't.

Right, jashley, not everyone has to set up camp in the doctor's office.  I have other issues that make my visits necessary, but the DS is usually annual blood tests at this stage of the game.  Nevertheless, it's different for everybody.  Annual is just an average.

Thank you, Patty.  I will look into the patches.
 
You are right to point out that not all people who've had WLS have resulting medical issues.  Didn't mean to give that impression.  Nutritional deficiencies aside, I have no regrets about having had surgery -- I don't think I'd be as healthy and mobile at this age without it.

Hi Victoria C. have you contacted your medical insurance? Their customer service and/or nurse hotline may have certain resources that your doc may not have access to. 

Good suggestion, SkinnyBonz.  I'll give them a call.  Thanks.