Thursday, February 19, 2015

The Thing About Trials


Here's the thing about trials...

We... or I, have somehow 'grown-up' with the idea that you get one trial at a time.  Obviously, I have learned, now that I'm all grown up, that this is not the case.  For many people, this is not the case.  But the other thing I have realized, just recently, is that sometimes, it isn't the obvious thing that is your trial.

The obvious trial(s) for us is clearly the heart, lung, kidney issues in two kids.  This has been hard but all the little 'satellite' trials that come with this are what is killing me!

For example...Patience!  It has been really hard to sit in an appointment and listen to doctors say how serious these problems are, and then not be able to get the next test, or the next appointment schedule for weeks, even months out!  Do you realize, it's been three months since we found out about Sam's heart and lung problems and we still haven't been able to do the cardiac MRI?  Three months!  It's been a full month...since the cardiologist wanted the test done!

Finally...late yesterday afternoon, I got ahold of the scheduling nurse to get the cardiac MRI scheduled.  Insurance was done fighting over a week ago!!  I have called her every single day and she hasn't returned one call.  I asked her why she didn't return my calls and she said she didn't get any messages from me...I hardly believe that but whatever, it's scheduled for next week.

It's the same thing for Urology...they are booked until the end of April!!  Supposedly, Sam's ureters are a mess so waiting two more months is either going to kill him or it will be resolved so what's the point to even making the appointment?  Yet, the radiologist said, "This is not looking good."

Pulmonology...same thing.  I scheduled Shelbie to see the new pulmonologist because you can't just keep living with lungs that are filled with nodules, lymph nodes and some unidentified fluid or mass but the appointment isn't until the end of March.  I asked the secretary if we could get in sooner since she has all these serious problems.  She said, "Well, hold on"  I guess she went to consult a nurse on the CT scan she had and came  back, "This is very abnormal for sure but the end of March is still the best we can do."

Still trying to schedule the bubble echo study for Shelbie but again...I've got a very annoying nurse dragging her feet.  Apparently, she went on vacation and didn't get anyone to take over her duties for her...

So, I'm trying really hard to keep my cool but it's really hard!  We wait and wait to find out our fate but in the meantime, we lull ourselves into this sense that everything is okay and it was all just a bad dream but then something happens to remind us that we are sitting in a very precarious place...therein lies the real trial.

The up and down of emotion.  Nothing is steady.  Nothing is static and though I say we are "Status Quo"  We are not.  And all this time waiting for what is suppose to be really important, comes across to people as being...not important or things would have happened by now.  For crying out loud, our friend found out the same day about his heart problems that we did and he is already a week out from surgery!  Just to put this in perspective...One of Sam's heart valves is the very same diameter of our friend's failing valve that put him in the high risk category for sudden cardiac death.

I blame Medicaid for all the waiting, you get what you pay for!   And...what you get is a committee of bureaucrats who analyze your case and decide if you really need the tests or not.   I can't just call up a specialist like I use to and schedule it myself.  I have to have a referral for everything and rely on secretaries and nurses who are just showing up to do a job and get paid.  Very few really understand the emotions and fear involved.  If a nurse forgets one thing in the referral, I have to call them back but the secretaries won't let me talk to a nurse so I have to leave messages, often multiple messages and then wait til the nurse finds the time to get back to me.  It can take days to get one question answered!

So frustrating...hence the hardest part of the trial.

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