Long Time No Update

On December 2, I’ll be at 2 years post transplant.   In some ways it doesn’t seem it’s been that long, in other aspects it seems longer.

I had another blip in my lung function again but rebounded again.  I guess this is just an annual dip due to weather changes.  Which I’m not really surprised by.  I’ve always had sensitivity to changes in season.

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Passed The Year & A Half Mark

It’s been awhile since my last update.  In April, I had a procedure that kept me overnight & was my first surgery after transplant.  I have one more procedure after Labor Day, hoping this is the last of it for a good stretch.  This is the flare up of my TSC which usually acts up after the LAM settles down.

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“Support” Staff Blocking Care

I’ve had a few instances now where I’ve really lost patience with healthcare staff as of late.  As have other friends with their situations.  It’s a growing trend that needs to be addressed.  Some of these support staff are anything but.

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It’s Been a Year…

Last night, I celebrated my one year transplant anniversary.  At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.

I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.

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A Few Answers

A few months ago, my numbers were unexplainably down about 30 perecent.

After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen,  so I needed another bronchoscopy (scope of my lungs).

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Blink Health Pricing Sometimes Beats GoodRx

I had to start using an Accu-chek meter, since I lost the headphone jack when I upgraded my iphone (for free) recently.

My Dario meter, which I loved, couldn’t be guaranteed accurate with using the new Apple dongle/adapter.

They are working on a compatible replacement part but it still has to go through FDA approval so who knows how long that will take.

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NaNoWriMo 2017: Plotober is Here

For the past two years I’ve written a novel for National Novel Writing Month.  It was a welcome distraction & radical departure from my life.

It also disciplined me to write 50,000 words in 30 days, which seemed really daunting at first but was actually doable.

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“Stepping Up” My Exercise

The past few weeks have been a bit tough.  My breathing numbers were down at my last visit at the end of July, so I have a bronchoscopy (a test where they scope your lungs to take a look) scheduled for later this month.  It might not be anything to worry about, but better safe than sorry.  Continue reading