For the past few years it was pretty hard for me to see movies.
For one, I was worried about my oxygen tank running out (I had one leak in the theatre once) & it was hard to fit it in the seats even in the disabled seating area.
(Even when I had my portable concentrator I was self conscious about if it was making too much noise even when it was stowed under my seat.)
But now, post transplant I find I can go to a matinee & enjoy myself without having to worry too much about crowds & germs (I do carry my mask in case).
My attention is also better.
It’s a relief because I really do enjoy movies, documentaries especially.
I know organ trafficking is a huge issue in some countries. I don’t comment on it on my blog because it’s a tough situation.
I can understand why some patients would undertake the risk because of the massive shortage of organs.
So I was expecting this documentary to be grim & even possibly somewhat sensationalistic from the description. That could not be farther from the truth.
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.
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 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.
I was hesitant to share this particular news before because I couldn’t find any real sources to verify what phase of clinical trial it was in. But I find this news highly promising. Yet, I’m trying not to get my hopes up too soon.
I do have a question I’d like to pose to some of my transplant friends, of whatever organ or whatever status. I know that many transplant recipients feel compelled to write their donor families, yet how many have felt the urge to write a farewell note to their original organ(s)?
I know I’ve been heavy & introspective lately again, as usual for me when I’m tossing things around. My next lung transplant follow-up appointment is tomorrow. Admittedly before any doctor’s appointment (regardless of news or lack thereof) I get a little amped. This is always the case & has been since 2004. I’ve been doing a good job taking my mind off of it for the first few days this week, but then also trying to do some preparing yesterday & today (if I have any lingering questions that popped into my head that I need to discuss).
I recently was introduced to someone in my local area, close in age to me, with some similar issues. He had his double lung transplant in May & is doing well. So for the past few days, as I’ve thought of different questions in relation to his journey & experiences that have come up that I’ve been asking as he’s reached out to me. Having him as an ear & sounding board has helped me process a few things that I wasn’t quite grasping before & I see that as a good thing.
Yet, today I had a bevy of things I could write about. I felt something else was in order. So low and behold I found this on my friend Leslie Franklin‘s Twitter feed recently & thought it was unique enough to share.
KidneyBuzz.com is one of the few sponsored findings I found on Facebook that really had information that appealed & applied to me specifically. It was one of the few sponsored tags I liked on Facebook even if it started as clickbait.
This HealthDay article really struck a cord when I read it. It’s not only the kidney population that sometimes has issues with the process of when to refer or list, it’s other organs too. But it’s compelling food for thought for patients and professionals, as transplantation is a treatment, but not a cure. They are also costly, but overall may be less costly than other long-term interventions that don’t offer many of the benefits & the possible quality of life improvements that transplants do. As I was reading that article, certain paragraphs resonated with me, but as much as we try and contribute this to a professional issue of late referrals, I personally believe there’s more to it.