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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When Other Medical Teams Fail Their Transplant Patients

I haven’t posted a personal update in a minute.   Part of it is because I’m extremely worn & frustrated & I don’t want that to bleed out and be perceived as whiny.  I know it couldn’t be farther from the truth & it’s not, but still this is what my head tells me sometimes.

Even though I constantly tell other friends with transplants who feel similarly that they are doing anything but.

While rather lengthy this update encapsulates a few months of frustrating experiences which I felt important to share with others.

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Review/Beta Testing: MySpiroo

I signed on to be a beta tester for this device a few weeks ago, maybe it’s a month or more now.  (Things have been kind of a whirlwind).  I was excited when I received the package with the Myspiroo because it’s a smart phone spirometer, which I have been hoping for even before I was transplanted.

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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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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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Journey To Now

I honestly forgot about this event until last night when I received a reminder email & updated agenda.  My local hospital was having a one-day symposium at a nearby campus & a few months ago had asked me to be part of a roundtable about lung transplant.   It finally hit me last night that we are at the end of the month.

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