Interesting Recent Links – Transplant Statistics/Leveraging Biomarkers

One of my LAM sisters had posted this item to her Facebook wall.  Some of these statistics I knew, others I didn’t, but I felt it was worth a share today.  It’s extremely interesting & also has some very nice video clips.

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I Dared Myself & Won

Well, I accomplished my goal yesterday.   I finished something I had never undertaken before, a novel.  At 50,000 words it’s probably more like a novella, but it’s the basis of something good. I do know that.

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Transplant Advances: Ice-Free Preservation – A Potential New Standard?

In the early days of my blog, I mentioned the warm perfusion preservation technique, ex-vivo.  Yet, this advance & the technology is not available to all patients & all centers just yet.  Also, not all organs can ideally be preserved via a warm perfusion method. Others actually benefit from what’s called cold perfusion, or essentially to “be on ice”.  Which was typically the way all organs were preserved up until ex-vivo technology came to be a reality or looked at as a possible option.  Continue reading

The 3rd Gene Rumbling in TSC Has Been Silenced

 

The TS Alliance alerted me to a very interesting research finding as of late.  I have mentioned this rare disease of mine a few times, but it is basically a genetic disorder that causes benign tumors on several of the body’s organs.  It wreaks havoc to say the least, sometimes causing epilepsy & autism, as well as other issues.  In my case, it also led me to developing LAM (though there is a sporadic form of LAM).  As I was growing up, 2 genes were identified through research.  I remember hearing rumblings of a possible third gene in the past few years.

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Kids Table or Big Table?

Thanksgiving brings back so many memories for me.  Though I’m usually not with my parents & family (the plains states weather is too unpredictable), I’m with close friends who make it a nice day.   This year is no exception.  Often, when I wouldn’t be able to make it home, I found friends in similar positions who were kind enough to take me in for the day. Continue reading

To Tat Or Not To Tat?

I think I surprised a few people at my last appointment. I asked about getting a tattoo as the appointment was winding down. I had wanted one for years, & thought maybe during the period that I was finally off the immunosuppressant I could maybe get one safely.

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The Finish Line Is Near

Yesterday  I did something I wasn’t quite sure I’d do.  I hit 40,860 words on the National Novel Writing Challenge  I undertook at the beginning of the month.  For someone who has never even attempted a novel before it seemed daunting at first. I only had two days notice of the challenge, even though I had a friend & improv teammate who swore by it & has been doing it for years. I can clearly see why.

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Food For Thought: Does Telling The Truth About Pain Mean You’re Being Too Negative?

I came across this post by Megan Devine in Tim Lawrence’s Twitter feed & it really spoke to me.  Partially because it’s something I’ve struggled with in sharing my own reality inside the doctor’s office & outside of it from time to time.  I know I posted about Tim’s great post on platitudes, but this piece from Megan also had me thinking when I came across it last night.

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What If I Was Offered A Former Smoker’s Lungs?

In the early days of my blog, my post, Deeper Questions, had me evaluating how I felt concerning being transplanted with “marginal” lungs that had been rehabilitated.  I saw that someone from one of my transplant support groups had posted this item from my transplant center’s website & it gave me thoughts along similar lines. Something I had not considered before.  How would I feel about receiving lungs from a (former) smoker?

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EPIC FAILURES In Navigating Healthcare & Insurance Systems

Even though it was written by a doctor, this post still rang true for me.  I took several of these calls over time as a customer service rep, & I would try to help people sort out the messes.  In fact, even after my promotion, this most likely was what I would be doing yet today (if I was still at work and not on disability). I’d be helping both employer groups & members.  I’m still in “recovery” mode…because part of me misses helping people, but part of me doesn’t miss troubleshooting messes like this in the slightest, especially when it came to dealing directly with specialty pharmacy issues…

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