Thursday, August 4, 2016

The dull moments

I wish I could write just dull moments.  Moments when there wasn't anything but dull, boring, nothing going on.  A moment when all I had left to do on my to do list was nothing.  What does nothing consist of anyways?  I may never know.

We got some more results in on that late day CT scan Shelbie had last week.  The MA called and said her lungs were completely and totally normal...nothing.  No AVM's even.  No blood clot.  I was a little perplexed because the regular CT scan without contrast showed all sorts of problems with the granulomas and calcifications in her lungs and the Echo supported the diagnosis of continued AVM's that are shunting blood in her heart.

Last night, the email came through that the test results were posted in MYCHART so I jumped on there to read for myself.  The only thing the radiologist was looking for was the pulmonary embolism which is no longer there so she dumped that last November with her first stroke.  Glad it's gone!

 The radiologist noted a new grouping of enlarged lymph nodes in the precarinal, prevascular and infrahilar areas.  These are all areas in and around the lungs. There was also something strange going on outside of her spleen which I didn't really understand- even after reading about it.

Ahhh...there is absolutely no possible way in my mind that lungs full of abnormal growths aren't causing a problem.  I feel like screaming because no one seems to be caring as much as me.  We just get sent on our way for another 6 months and they will do all this screening again.  At what point, I wonder, do these things need to be dealt with.  Apparently not this month.  So, we continue to find a way to live with all this in the back or our mind...or the front of our mind depending on the given day.

I got a letter on Tuesday or was it Monday that said our insurance company had chosen not to approve the testing on Spencer's heart and lungs...the testing we already did last week! They said it wasn't medically necessary.  Of course, breathing and living isn't necessary but it is nice.  They mailed the letter from Chicago the day before our appointments!  What a pile of crap and a bunch of losers.   I wrote a little rant on Facebook, mostly to let off a little steam but I am seriously writing a more mature correspondence about what I think of them.  I have already spent thousands of dollars on things they refused to cover from last year.  It is so unfair.  They judge the necessity of these tests according to the average 21 year old, not the average 21 year old with Dyskeratosis Congenita.  If they stopped for one minute to read about his disease, they would see that these tests are extremely important to prevention of bigger problems like, oh, I don't know...double lung and heart transplant!  Would they like to pay for some new organs and rejection meds for a lifetime or some minor testing in comparison?

In other news completely unrelated...I was asked to submit a chapter for the second edition of the 29 Gifts book!  I was caught off guard when the author of 29 Gifts contacted me because she found my posts on Instagram about my own adventure with 29 Gifts.  I've been dragging my feet on getting back to her but I have to do this!  It has been a tradition now that sets the year off to a good start.  The deadline is August 30 so I have to get busy.

Just for fun...here is the Facebook Rant from earlier this week...yes, you can smile, even laugh!

 "Dear Insurance Company, I wanted to apologize for the things I may have said when I received your lovely correspondence regarding your opinion of the Cardiac testing my kids required this past week. I'm sure you didn't notice that you mailed it from the other side of the country the day before the testing took place. I had to laugh when you said you don't find irregular heartbeats, dizziness and passing out anything to worry about. I don't know why I over-react when I see my kid passed out on the kitchen floor. I'm just a Nervous Nellie I guess. Anyways, as I was saying, we inadvertently did the $8000 worth of testing because your letter just arrived today. Not to worry though, I have a rich Uncle in Dubai who said he would promptly send funds to cover the expenses. Also, I think it's great you employ inept people to offer them 'on the job' training for anatomy and the workings of the human body so they can practice making life and death decisions on my family. Way to capitalize on a poor idea! They were right in denying the lung treatments for my daughter. We have found that a paper bag and some rubber tubing from the local Farm and Ranch store works wonders! Might I suggest they start exploring WebMD? That's where I find my best medical advice...always. You might like it. I read somewhere on that website that not being able to breathe is a problem. You can't believe everything on the internet though. Take it for what it's worth! Oh, and for some reason, people fair better in life when their heart actually beats. I know weird right? Well keep up the good job!!"



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