I found out about this movie much too late to back their crowdfunding campaign, but even then I was intrigued.
I found The Wave Set on social media & reached out to them wondering when the film would be released.
UNOS had this excellent video posted to their Facebook page last month.
I think it makes a very straightforward & practical explanation of the list & how it works in a way people can relate to.
I know I struggle to really boil it down to people in a way that’s easy to grasp, so I am so glad they posted this video to their social media page & hope they will add it sometime soon to their website.
(Photo credit: UNOS Facebook page profile image)
So in more important news, I was happy to see this news report. I had heard from others who have used this herb, Kratom, to help their pain with great results. I didn’t know this until recently. The way I actually found about it were that some friends I knew were being affected by the proposed change to the law that would have the herb banned & they were just as shocked & scared as Jordan was at the proposed change.
I admire Jordan for her advocacy for transplant patients but also for those of us who suffer chronic pain. I’m glad she explained in her own words to the general public what this herb has done to improve her quality of life.
The post surgical pain for many solid organ transplant recipients can turn chronic. Life with transplant is hard enough, to have to manage post transplant with intractable chronic pain is even more daunting than it sounds & unfathomable to people.
I’ve talked about my own struggles here with chronic pain with past lung surgeries & now end stage lung disease while I wait for my transplant. My quality of life is greatly diminished without adequate pain control. I am in pain every day, but thanks to the regimen my doctors have given me, it’s a manageable one. Without that control, I’m almost bedridden because the pain is so intense.
I wanted to bring this up to my doctor to talk to about using instead of an opioid, but I was hesitant & abandoned it because I had thought that it was going to be banned so there wouldn’t be much point. Now I’m glad I can at least bring it up as an option because most people report very mild if any side effects in taking Kratom.
It can be hard for pre & post transplant patients to find non opioid alternatives for their pain because just like many immunsuppressant drugs, most pain relievers aren’t kidney safe.
However, both medical marijuana (MMJ) & Kratom are touted as such and are being recommended as opioid alternatives.
It appears too that Kratom gets the same bum rap as marijuana in the public eye. There’s a lot of stigma & misunderstanding surrounding the use & many anti-drug websites consider Kratom an herbal narcotic.
(In fact, the hyperlinks I’ve shown above here, the two – point out the most balanced & least sensationalistic collective studies on Kratom. The second is an in-depth collective analysis done by Dale Jarue. I read through quite a bit of it & it’s pretty well balanced compared to most other news reports & information on the web. Though I did sift through quite a bit & found some decent articles for background on to the real issue & scurry to ban the herb.)
There’s quite a bit of the same politics at play here as there is with MMJ, as this Forbes article outlines. Another prior article outlines research that proves why Kratom is safer than opioids. That’s what makes the politics of it so distressing.
I’m hoping the public opinion gets the ban permanently abandoned because people need access to these pain alternatives (including both MMJ and Kratom) if they can tolerate them better & with fewer side effects.
I may now, hearing that this decision might be reversed, bring it up to my doctors for discussion just to have an open discussion of the context of Kratom and whether it might be an effective alternative for me to consider for chronic pain.
Some strains of Kratom also help with sleep & anxiety in addition to pain.
As the news clip pointed out it also helps with PTSD symptoms.
So there are a lot of good reasons to keep this herb from being banned & further reasons why like MMJ it needs further study.
I’ll be watching for more news to see how this all turns out.
(Feature Image: source: Wikipedia)
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.)
This was a difficult alert to read. However, I commend my center for looking into such issues & challenging transplant centers as a whole to do better by their patients.
While this was a liver transplant based study, I am sure livers are not the only organ that are affected by such practices.
I don’t know how to feel about this blog post to be quite honest. I know that the allocation & final rules vary organ to organ, so I can only speak to lungs, not liver. I wish though, that the Health Affairs Blog would have made that distinction in the title of this post because this clearly only addresses livers. Not other organs in contrast or comparison, so it’s not a wholly balanced discussion.