REBLOG: From The Life You Gave Me Blog

I’m sharing this link because Nechama reached out to me (& a few others) & asked us to contribute to National Invisible Awareness Month (held each September).

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Ari Sytner Commits Himself to Raising Organ Donation Awareness

This is a subject I haven’t really touched on.  The ongoing controversy & commentary as to whether inmates can or should be allowed to donate their organs.   I didn’t know how to broach it until my friend Ari, who is a living kidney donor & a rabbi, weighed in on it himself when asked by 60 Minutes Australia.

I know Ari through Twitter & now through supporting his Kickstarter campaign. (Please check it out & back his project, it really is worth it).

He’s a very positive person who I am so happy does so many things to champion organ donation as a whole, but especially living donation as well.

I’m glad he’s discussing some of the more hot button issues like inmate donation.

On the recipient end, we are always given the choice.

Yes, there could be certain diseases that we could be exposed to but the organs are tested thoroughly.

We are told the nature of the high risk donation & given the detail & they re-iterate the risks.  We can then choose to accept or not accept the organ.

Even if I ran the small risk of contracting hepatitis I would still accept the organ because Hepatitis can be treated & managed & I know it wasn’t given to me intentionally because it was screened.  The risk is, if I pass on that organ & I’ve already been waiting 7 months for a call to come already, it could be another 7 months I might have to wait again if I decide I’m not comfortable with the risk.   It’s up to the recipient to weight their quality of life & situation on a case-by -case basis.

No good or willing organ should be discarded just because it came from an inmate. Inmates are people.   I  don’t think they should be forced or mandated to donate if they clearly don’t want to, but I would willingly accept an inmates organs & treasure them for the gift they are.

I know others may see things differently,  but it is something you cannot decide until you’re there in that moment in the wait yourself & fighting for your life.

Thank you Ari, for what you are doing to increase donation awareness as a whole but to reach out to others to encourage them to also choose living donation if possible.

I know several who have benefitted from the experience (both donors & recipients) so it really does warm my heart to see someone so committed to championing that & also taking on issues that might seem to be a barrier or an excuse not to donate.

(Photo credit:  Ari’s twitter profile photo)





Review: A Love Worth Giving

I’ve watched a good number of transplant documentaries by now.  In fact, I’ve become a little obsessed with documentaries as whole at points.

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Reblog: Everybody Has Something Wrong With Them

I first stumbled across this blogger’s wonderful blog when I saw a review post of the Quell pain relief device.  You can find her review in my device review archive page.

Recently, I came across another gem of hers from her “Wear, Tear, & Care” blog that I felt was worth a share.

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Important Article: How Government Quality Guidelines Hurt Transplant Patients (Forbes)

I knew I’d end up commenting on this opinion piece when I spotted it in a Google alert.  I’ve heard professionals talk about this & knew it came into play, but didn’t realize the impact until very recently.

I also try in general to stick to hard news articles, but I felt that even though it was an opinion piece it was a balanced one & bolstered many recent findings & news reports that have covered this quandary.

Kudos to the author…

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REBLOG: But You Don’t Look Sick?! – A Letter On Why I Hide My Illness

I came across this post & had to add it to my list of great content to share.  It mimics how I’ve felt for several years, even prior to the transplant journey entering my life.

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(Archived) Webinar: Screening & Management of LAM in TSC: What’s New & What’s Needed

On August 11th, the American Thoracic Society (ATS) & the TS Alliance co-hosted this webinar.

I wasn’t able to join that day but I did skim through this & found it to be a good basic primer for people who know a little bit about both diseases but want to learn more.  Continue reading