Article: Man Needs Another Miracle 20 Years After Getting New Heart

Frank Bodino’s story is incredible.  Read it for yourself here.

Yet, what’s even more incredible is how he’s being re-listed through a novel program after being turned down by 4 other centers even with his relentless dedication to taking care of his donor heart.

Continue reading

Action Needed: Insurers Take Aim & Try To End Charitable Financial Assistance For CKD & Dialysis Patients

I don’t really circulate petitions unless I feel they fight a real credible threat to someone else.

When I say I’m in recovery from my job, I’m only half joking about that.

My employer & the self-funded insurance market was a hell of a lot more fair & equitable than most of the major players in the fully insured health insurance sector that most of us are used to dealing with.  There are things I miss about working in it, but definitely others I don’t.

Because we had to report results & answers to multiple entities (employers, insurance network partners, subscribers alike) & had to account for everything, there was more transparency than what most employers get from standard (or fully insured plans).

I see this even my own company insurance.

I learned how the health insurance market works overall over the past 3 or more years (still continue to) & I’m glad I did.

I’ve been in a better position to successfully navigate the bureaucratic end of transplant as it comes up than I would have been without that experience.

There are many things that I don’t agree with but understand about the industry itself.

In fairness, I also didn’t fully grasp what happened behind the scenes (or otherwise) until I was there doing the daily grind & saw it in action myself.

For me, it’s conflicting at times.

Continue reading

Powerful Organ Donation Video

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

Transplant Medicines Being Threatened by Medicare

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.

 

Transplant Hero App: A Transplant Surgeon Gives Back

I found a great free app I’m hoping to try out after my next appointment. If not then, I know I will definitely use it post-transplant.

I thought it would be great to pass this information along to others who have trouble managing their transplant medications or haven’t found a medication management app that they like yet.

Continue reading

Potentially Imporant Finding in LAM/TSC Research

I woke up to a pleasant surprise this morning.  I have to thank my tweetchat & Twitter friend, Joe Babaian, for passing along this lead.

This release is very preliminary. That said, I found it interesting as I have always felt (as have others) that it wasn’t just the MTOR pathway alone that was at work in both of my diseases (LAM & TSC).  This seems to confirm that theory.

Continue reading

Access to Transplant Drugs Potentially Blocked

Healthcare issues aren’t nationalistic.  When one country faces issues with accessing vital medicine or another important issue, others surely may follow suit.

Occasionally, I’ll take on international issues if they are relevant to our community because it could affect my fellow LAM sisters, TSC advocates, & other transplantees I know globally.

Today is one of those days…

LAM Action & Tuberous Sclerosis Association friends, please take heed for future reference for those you serve who may have had transplants or may need them in the future. Even though it primarily affects renal transplantation & drugs now, it sets a dangerous precedent for similar problems with other organs.

Continue reading

Man Donates Kidney After Finding Misplaced Craigslist Ad

Now this is a cool story.  One of my friends had posted it late last month, but I just remembered seeing it the other day.   In a way, it was interesting timing as one of my friends was in a local improv show where they were improving scenes based on Craigslist ads.  The most recent show was Thanksgiving evening & I think it was that night that I saw the news clip in my feed.

Continue reading

Transplant Advances: Ice-Free Preservation – A Potential New Standard?

In the early days of my blog, I mentioned the warm perfusion preservation technique, ex-vivo.  Yet, this advance & the technology is not available to all patients & all centers just yet.  Also, not all organs can ideally be preserved via a warm perfusion method. Others actually benefit from what’s called cold perfusion, or essentially to “be on ice”.  Which was typically the way all organs were preserved up until ex-vivo technology came to be a reality or looked at as a possible option.  Continue reading

The 3rd Gene Rumbling in TSC Has Been Silenced

 

The TS Alliance alerted me to a very interesting research finding as of late.  I have mentioned this rare disease of mine a few times, but it is basically a genetic disorder that causes benign tumors on several of the body’s organs.  It wreaks havoc to say the least, sometimes causing epilepsy & autism, as well as other issues.  In my case, it also led me to developing LAM (though there is a sporadic form of LAM).  As I was growing up, 2 genes were identified through research.  I remember hearing rumblings of a possible third gene in the past few years.

Continue reading