I had my latest transplant team appointment yesterday. I am always nervous as hell before them because I can never anticipate what’s really going to happen. I also dread the pulmonary function testing (PFT) because it has become a necessary evil more often than I’d like (which I understand), but it takes a bit more out of me each time.
Tag Archives: empowered patient
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.
“Yes And” Is the New “Just Do It!”
I’ve always enjoyed comedy, but I’m a fairly serious person. In fact, sometimes I can be downright anal when it comes to certain elements in my life. But people sometimes will laugh at things I say & do because I find humor in things that others don’t. It’s sometimes off-beat, corny, dry & snarky. But it’s always been (to some degree) a defense mechanism.
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?
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.
AS I LIVE & BREATHE 