I have a nurse case manager!

I guess I need to get my ducks in a row.  Now granted, I'm actually pretty organized when it comes to my kidneys (not so much in other areas, but I digress).

So, Hennepin County Medical Center is in a "no referral status" with Cigna, which means that if I were to choose them for a transplant, then my benefits would only be covered at 90%.  With choosing a Lifesource facility, which is Cigna's way of saying "preferred", they're covered at 100%, plus travel benefits if a center is 60+ miles from my home.  The 2 Lifesource facilities here in Minnesota are Mayo and University of Minnesota, so the next step for me is to contact my nephrologist here in town and see what he thinks of U of M.

Once a facility is selected and Cigna contacts my nephrologist, I need to be evaluated and approved for a transplant via the insurance company.  There'll be a battery of tests (most of which I've already done) including chest x-rays, EKG, ECG, dentist, and visits with a social worker.  I'll also provide my previous results for pap, colonoscopy and mammogram so that I don't have to do THOSE again.  Once all that stuff is done, AND if they approve me, THEN Joacim can get typed for donation.  It's a bit frustrating that we go through all of this before we even know if he's able to donate, but then on the flip side, it wouldn't make sense for insurance to pay for typing if I wasn't able to get a transplant.  So I guess it's a wash.

This will be interesting...to see how it all plays out.  Who knows what will happen....if this will even go through.  I'll just keep my fingers crossed that we make it to the point of typing Joacim, because as I said earlier...if he's not a match, then it just doesn't matter.

Other than that, things are good.  The only side effect that I think I'm experiencing from the trial is an occasional bloody nose, but since I live in Minnesota, that could be weather-related.  I've communicated this info to the coordinator for documentation, but it's not sever enough to warrant worry, just annoyance.

It looks like we're starting up a chapter of Nephcure here in Minnesota now!  And we may hold our first walk at the Mall of America.  There is an amazing woman who I consider to be a friend that is affiliated with the mall, and sadly her daughter has FSGS.  She's going to be an amazing asset to the organization!!!  We also have a new regional coordinator who is excited and energized, and planning on making a trip up here.  There are apparently quite a few FSGS patients in Minnesota, so we need to do a better job of getting the word out!

Nerves...

Mine are frazzled. I'm lying in bed at 8:00 to TRY to relax, but I'm finding it nearly impossible. Murphy has a squeaking toy, Izzy wants to "snuggle"...I just need some peace and quiet. I've had a headache the last couple of days and some nausea, so a good night of solid sleep is just what this chick needs.

Clinical Trial

This past Friday I started my 2nd clinical trial.  You may remember that I am participating in the FONT II trial.  I had to stop the drug portion early due to a cervical cancer scare (thankfully everything is OK), but I'm still being followed on that one.  This newest study is another drug trial, but this time I have no idea if I've gotten the drug as it's a randomized study.  It's a 3-armed study (placebo, half dose and full dose), and it lasts 252 days.  I'll have 4 IV-infusions and then follow-up labs/surveys for the duration.  The infusions are 28 days apart, so my next one is scheduled for the end of April.

My nurse.  We're kindred spirits :)

The tools required for the job

Warming up the veins

The IV

The vampire's request

the bag

the setu[

and a selfie

So far, I don't feel any different.  My urine is still ridiculously foamy, and I'm swollen.  Hopefully I got the drug, and hopefully it works to reduce my protein.  Fingers crossed :)