The HOPE Act was a big move in reversing the stance of disqualifying donors & patients alike because of HIV Status. The passage of this act in 2013, led to changes & developing safeguards for transplants in the HIV population.
“Before this act at least 500-600 lives were lost per year because both donors & patients were disqualified from organ transplantation. ” (A statistic taken from this article.)
The past years have been quite the journey & have taken me to some incredibly high and low places, both professionally & personally. I owe quite a bit of that ride to doctors.
So on this National Doctor’s Day, I would like to thank the many doctors I’ve been privileged to know & be cared for by, volunteered with, & worked along side of. As well as those I have come to know as people.
I felt off today when I got up & I didn’t immediately know why. But then it hit me. I saw something in my Timeline on Facebook that triggered me.
I don’t cry easily, but this video that my cousin passed along to me via Facebook yesterday really got the water works going.
I figured it was worth a share… Continue reading
It seems since I went off the Rapamune, my skin has gone a bit crazy & been a bit extra sensitive. I’m not sure why. I’ve used the same types of products I always have on my skin, no major changes. I always use very natural based soap (in fact, one of my hobbies is making my own), but I’ve been subject at points to some fairly intense itching & irritation.
Yet again, I find some actually useful stuff on Facebook. (I can’t remember the exact post or I would have linked to it.)
Propeller Health was asking for participants to try their app & be part of a study in exchange for one of their sensors.
There’s a great chronic illness & disability podcast I found a few months after starting this blog called In Sickness & In Health.
I started interacting with the host, Cara Gael on Twitter & asked her to sit in on a Blab we did on Crowdsourcing Tough Diagnoses.
She’s such a fount of knowledge so I was humbled when she asked me to talk with her last weekend about being on her podcast. I was delighted to do so.
I’ve been on another podcast awhile back but that hasn’t posted yet. When it does, I’ll link to it. I think podcasts as a whole are a great way to share information.
I’ll try not to give any spoilers about this series since it’s new. I just do get excited anytime I see that they try to bring attention to transplant. Whether it’s based on surgery or another storyline. I think it’s important, however; to point out inaccuracies, there always seems something to take issue with.
This lead came yesterday courtesy of my friend, DAP, a heart transplant recipient & fellow blogger.
Please read the latest e-news from the TRIO Action Center. They will then provide a link to a letter you can tailor & send in support of fighting Medicare on limiting transplant drugs & a few others that are now under protected status.
TRIO stands for Transplant Recipients International Organization. They are a nonprofit support group for the transplant community whose focus is on advocacy, awareness, support & education.
I do not qualify for Medicare as of yet, but I am concerned about this because private insurance often takes cues as to what it will or won’t cover from Medicaid & Medicare.
Blocking access to transplant drugs could prove lethal, especially anti-rejection medications. I’m not being dramatic when I say that.
I hope others will care enough to send their own letters in to contest this move for those they know who might need a transplant either now or in the future. Or to support those they know who have had transplant.
Thanks DAP for the alert on this. Hoping by posting this today we keep the pressure up on the issue & raise awareness.
I guess I find out what happens when you report an illness while you’re listed. No sooner than an hour after yesterday’s post did I come down with a wicked bug. I rarely run a fever, but I had that & more. I’ll spare you the other unpleasantness.
But of course this means I have to cancel my appointment for that meeting today. Which probably means putting off the high risk calls for another month or whenever I can get that lecture rescheduled for.