“Drink From The Well of Your Self & Begin Again” – Charles Bukowski

For the past 8 years or so, I really have been wanting to write on a regular basis. Although, I’ve never felt right about rigidly disciplining myself to do so because when I have it comes off contrived.  Charles Bukowski did it on a regular basis through poetry, novels, & other works. It was more inspired than not (even he admits it).  But for me, it always just seemed to come when it felt like it; even when I would try otherwise to coax it out, until very recently. Feels like lately a day without blogging seems an incomplete day…

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Pill Tracking Can Be Time Consuming – But Such Is Life… (Pre & Post Transplant)

Right now, I take about 8 different medicines to keep LAM & TSC in check as well as a few other conditions (like reflux & allergies).  One of them is an immunosuppressant commonly used in kidney transplants.  However, this is nothing compared to what I will be taking post-transplant. I thought this was a good teachable moment for people to understand one of the trade-offs that transplant recipients make & part of the reason why the after-care expenses can be a bit much…

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Sometimes Advocacy & Public Safety Lessons Come When Least Expected

I had toyed about not writing this, but I felt compelled to possibly do this to help someone who might be in my position one day & may not be as fortunate as I was to have friends help me sort this mess out…

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I Gave LAM A Good Spanking Today

Today, it was cold & rainy. Normally, I’d stay in but made a conscious choice not to. I still decided that I needed to get out to the community center & get in my exercise. Despite the rain, I also wanted to get out of the house for a bit to get a little bit of fresh air & change of scenery.  I still have days where I give LAM a good spanking.  Today, thankfully was one of those days. Hopefully, there will still be more…

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Patient Can Be A Loaded Word

The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.

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KevinMD Had It Right: We ARE In The Hunger Games of Healthcare

Another boring “business of healthcare type post?” Really? Yes, really.  While this isn’t specifically related to my previous post, it does affect it. It also may not be specifically transplant related but it also has an impact there. I’m sure  it’s not my only healthcare pet peeve, but a larger one. It’s also one I’m sure that concerns many of us. Maybe it’s an even bigger issue than the few I pointed out in my previous post.  It’s the P “word” – price transparency.  What the heck is it? Why should we care?

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Evaluation: Ready Or Not; Here I Come

This HealthDay article really struck a cord when I read it.  It’s not only the kidney population that sometimes has issues with the process of when to refer or list, it’s other organs too.  But it’s compelling food for thought for patients and professionals, as transplantation is a treatment, but not a cure.  They are also costly, but overall may be less costly than other long-term interventions that don’t offer many of the benefits & the possible quality of life improvements that transplants do.  As I was reading that article, certain paragraphs resonated with me, but as much as we try and contribute this to a professional issue of late referrals, I personally believe there’s more to it.

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