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.
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?
I know laying out this “business side of medicine” seems a trite & boring discussion that no one should care about. But it’s anything but that. This is something everyone, whether they have chronic illness, rare diseases, or not can relate to & I’m sure find equally frustrating when it’s happened. How many of us have called to book an appointment with their primary care doctor or specialist & been told (less than nicely, I might add), “Dr. X is no longer with the practice”. Or “Dr. X no longer takes (insert name) insurance.”
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.
Thinking outside of common subjects that my rare disease communities are hesitant to discuss (for fear of coming across as morbid or negative), I was thinking of innovations we should be celebrating, but are hesitant to because they may run afoul of our friends & family’s personal ethics & would cause several heated personal & social media discussions over the ethics involved.
Sometimes, when an important issue arises, I have to call attention to it. As I inch closer & closer to possibly needing Social Security Disability benefits I get concerned not only over the process & fight I will need to get it, but if it will even be there when I need it? How many of us in the younger generation, (unless we have parents reaching retirement age) really know about Social Security & what it does? How many of us recognize the urgency & diligence we need to possess to keep it going? (Let me be clear, this is not a political soapbox posting. This is a bipartisan mess that needs to be sorted out.)
Today is a day where I woke up not feeling well. My energy was off. But yet, I still got up & did something with my morning. As Ronda Rousey says, “I’m not a DNB (Do Nothing Bitch)!” I think I need to buy one of her shirts & wear it for inspiration on days like today. (Though I admit, my interpretation of being a DNB might differ from others. I’m totally picking up what Ronda’s putting down with it at it’s core, however).
When I first started talking with my doctor at Penn in late 2010/early 2011 & we had the initial facts & figures talk, it was estimated that the national averages for double lung transplants were around 50-60 percent from what I remember. In addition to that percentage seeming to correlate with data I could find online during that time from reputable sources. I am going to be honest, some of the initial information was hard pill to swallow & the statistics hard to hear.
Thanks to Elin Silveous, I am pretty sure I pinpointed the reasons for not starting a blog sooner. She tweeted this important article today from U.S. News & World Report. While I am all for advocacy & awareness, it can be a fine line deciding what to share or not to share when it comes to my rare diseases.
This weighs fresh on my mind today. I just received my testing schedule for my lung transplant evaluation on August 17-21. One of my friends received a transplant at UPENN a few years back (I referred her over to my doctor, after problems she faced at another center). I went to visit her at the Gift of Life Family House & was really impressed with their programs & accommodations. Little did I know then, that I’d have to utilize these services. But what if I didn’t have this resource?