A Few Answers

A few months ago, my numbers were unexplainably down about 30 perecent.

After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen,  so I needed another bronchoscopy (scope of my lungs).

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Journey To Now

I honestly forgot about this event until last night when I received a reminder email & updated agenda.  My local hospital was having a one-day symposium at a nearby campus & a few months ago had asked me to be part of a roundtable about lung transplant.   It finally hit me last night that we are at the end of the month.

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Week 1 Post Transplant Rehab Complete

I completed my first week of post transplant rehab.   I did a mile on the treadmill in about 25 minutes which I wasn’t sure I’d be moving at that great a clip so soon. So that was a pleasant surprise.

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REBLOG: When Delivery Is Not A Luxury

I think Esme has an excellent point with this blog post.

I am extremely fortunate in that I have lived with friends for several years & when I’ve been sick or not feeling well they’ve always been the first to pitch in to help.

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REBLOG: Dear Pennsylvania Governor Tom Wolf, Can We Talk Medical Marijuana From A Chronically Ill Person’s Perspective?

This is still a hot topic. I know I discussed this awhile ago in a past post. I discussed it then more in the context of how I also have some friends here in the PA area that worked diligently for a few years to get the PA Bill passed.

That said, I think Brittney’s post (Brittany is one of my fellow bloggers from the Chronic Illness Blogger Network) is great & brings up additional food for thought.

I think she makes some excellent points.

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From NHS Trust: Transplant Patient Comes Face To Face With His Old Heart

This article really struck a cord as I read it.   It reminds me of the reasons why I filled out a consent form to donate my old lungs to LAM research & also at least get tested to see if any of my other organs or tissues could be donated to someone who needed them.

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Fear of the Unknown

Recently, I found another LAM sister came to my center to dual list after essentially getting the run around from another center in NY.  I refuse to name this center but have often butted heads with on how they manage women with my disease.

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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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