Thursday, October 4, 2012

More Medical Junk And Good News

It's been a long haul.

The beginning of September we put in an exception request for Vivonex RTF and the rest of my enteral supplies, as Medicaid has to do a yearly review. This request for such an expensive, specialized formula flagged me and Medicaid decided they were going to investigate all the reasons why we've switched formulas before.

Then they took the liberty to investigate if I still qualified for enteral feeding. If it was denied, we could have been waiting months for reinvestigation, I would have had to redo all the tests (gastric emptying scan, fecal fat test, CT scans, blah, blah, blah).

The wonderful news is all that didn't happen. I only waited a month (while reusing the stash of bags I'd hidden away, ever so reluctantly, along with my stash of slip tip syringes and BAXA syringes, and infused only 500 calories a day which is two cartons of Vibonex RTF...nightmare!) and the approval went through.

The story of how it went through is pretty cool, actually. My pastor had just called and said the church would pay for a case of Vivonex RTF for me out of the church fund (I'd been surviving off of donated cases). Wrote his contact number off my list and called my infusion company. I told the enteral pharmacist the scenario and she put me on hold. For a long time. Then she came back on the phone and said "We just got the paperwork back from Medicaid. Everything is good. We'll send a shipment to you tomorrow".

How cool is that?

So I called and texted and Facebooked (can I do that? Is that a word now?) a million people. Best. News. EVER!

So here we are also with the current situation. In four days (October 8th) I will be having what I consider moderate surgery. The G/J is coming out and a long, standard G tube is going in. This is for draining 24/7 (sexy? No. Necessary? Yup). Then, I am having a long, skinny 9 french J (jejunostomy) tube put it lapriscopically. They will make several tiny incisions instead of on large open one (yay!) and thread it in using the Weitzel tunnel method. Yeah, it's gonna hurt, but that's what anesthesia is for!

It is supposed to be outpatient surgery. I hope it ends up that way, but my last lapriscopic J tube ended with many horrid complications (pneumonia, collapsed lung, albumin in the toilet, extreme pain, etc, etc.). This is a different set of circumstances, however. So I really think this will be outpatient.

As for the mobility and in home care issues: I have bought two pairs of yoga pants. When you have trouble dressing yourself, jeans are the devil (and all I have are jeans and PJ pants). I bought black and grey. These should go with most of my shirts. My caseworker is going to help with my apartment. I am going to continue to try hard to keep up with ADL's. It is my theory this is all related to malnutrition. So once I'm back to my baseline needs, I should be able to care for myself. I'm being warned it could take a few months.

But then, they've really never met the likes of me ;)

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