Musings N Ponderings

This is by far the hardest post I’ve had to make.   I’ve endured many significant losses in my life.  Some of them I’ve posted about here.  But this is by far the toughest.  I’m grasping for words. (more…)

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 CT of my lungs. (more…)

10,000 words down, 11 months in

I’ve made a tough call.  I’m not abandoning my play, just setting it aside for now. (more…)

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). (more…)

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. (more…)

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. (more…)

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. (more…)

9 Months…

A few days ago (on 9/2) I made my 9 month transplant anniversary. A few weeks before that I had another bronchoscopy because my numbers were down. All appears to be OK.  No rejection.  That’s good. I’m hoping the fall brings better breathing numbers. (more…)

Bob Vulfov Speaks The Truth Even in Jest…

This is germane to not only events in a America right now, but also disparities in healthcare. (more…)

“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.  (more…)

Review: Kinsa Smart Ear Thermometer

I hadn’t done a review in awhile because I had my nice little arsenal of health stuff. Recently I had to make some changes.  One was prompted from getting a case of breakthrough oral thrush after a change in some medicines.  The other was because I finally made the leap to get an iphone 7plus since I was due for an upgrade. (more…)

It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…

One of my volunteer friends died a few days ago.    A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public. (more…)

Tiny Bubbles, Er… I Mean Blips

I promised to be honest when I started my blog to not just report all the “good stuff” all the time, because like any path, the transplant path has fits & starts, blips, & snags.  Mine, overall despite being annoying, have been small.  Yet, it’s frustrating at times. (more…)

2017 Transplant Patient Summit

I was notified a little over a month ago that I was selected for the first-ever American Society of Transplantation (AST) Patient Summit in October. (more…)

Me Without Healthcare….

Again, a rare occurance to get political on my blog.  Because whether people agree with me or not. It is a matter of life & death.  The AHCA/BRCA must not pass! I do not joke about death.  Yet, after asking nicely with no movement & amendments sure to get worse, I know no other way to get through. The 13 authors don’t want to be called heartless or murderers then don’t pass this cruel bill. Some…

Hi! Remember Me? I’m TSC!

I had another check up Thursday.  My lungs are still doing great,  but I wish I could say the same about my kidneys. I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant. (more…)

I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month. (more…)