Wednesday, October 1, 2014

Medical Update

For a year now Sweet Potato's Lung specialist has wanted me to take her to see his mentor in St. Louis.  But he didn't want her traveling north in the flu season and well we were swamped last summer.  So I thought this summer we might travel to get a second opinion... he offered 3 other places one of which was children's in Boston. Well my sister lives in Boston and just as I was starting to put the bits and pieces in place, a news story broke about Children's in Boston.  The story is about how Children's tried to terminate the "out of state" parental rights. A bit of digging showed me this seemed to be a habit of theirs and My trip to see my sister and see a specialist was off.  Instead we started to plan a trip to St. Louis to see the guy our current doctor really wanted us to see.  So we made an appointment which was months away because he's a specialist. :-)

But we hit a road block,  due to rising costs of private health insurance our ministry no longer offers it as a benefit.  Shifting over to the ACA was fraught with glitches. We easily spent 80 hours on the phone or website just trying to get past a yellow box. Talked to numerous rude and unhelpful supervisors and experienced just about every dialect in american english.  We made at least 4 different accounts trying to work around the glitches...  We deleted and started again as many as 35 applications.  If not for the help of the company our ministry made available to us, to advocate and walk us through it, I'm not sure we would be insured right now.  It was only after the wonderful young man that was helping us, insisted on our right to file and appeal did we actually get someone at the ACA to help us.  The woman at the Appeals office confide in me that she has over 400 appeal calls to do a week.  That is crazy as she easily spent 3 hours on the phone with me as - yes you guessed it we created a new application and  re-applied.  5 hours after we got a helpful supervisor I was informed by her that she managed to get "around" the glitch and we could sign up... But I had to send 4 document to be verified.

We had been without insurance for over a month.

While we were dealing with this I had to keep pushing back and rescheduling Sweet Potato's appointment.  I'll leave out the Yes she covered no she not, yes she is, no she's not, back in forth we had with the doctors office and my insurance company.  I'm *still* not sure what bills we will see even though I did do everything the Dr. Office wanted. I have to applaud the billing department at Dr Ferkol's Office they were amazing and sweet. They just want to make sure she could be seen and we could afford it.  

So after much paperwork, phone calls, dates moved we finally took the trip to St. Louis to see Dr Ferkol. Who was amazing, kind, informative, and a good educator.  After talking with Sweet Potato and us, looking at all the tests they did in house he concluded Dr Lie's suspected diagnosis as being the correct one. Well he gave us a 99.9% chance Sweet Potato has Primary Ciliary Dyskinesia (PCD).  You can check it out at the website. It's a pretty rare genetic disorder.  So we have let him enter her in his study, as Dr Ferkol is trying to find a less invasive way to diagnoise this disease and of course to study it.

We as a family are processing all the information he gave us and reading up on it at various websites. The good news is she is probably over medicated so she may be able to come off of some of them. The bad news is this is going to be a life long battle for her.


  1. I hope you post more stories soon!

    1. She is not longer at 99.9% but at 100% since the test came back. apparently the wiggly bits on the ends are mis-formed so its official.