It’s been a moment since I’ve done a review. This is partially due to not receiving some of the things I’ve backed just yet.
Still, I came across something fascinating & that I was lucky enough to receive a discount on the package in exchange for doing some user testing & exchanging feedback. I was so happy I did.
My LAM sister, Sarah Poitras, has a wonderful blog. She’s been traveling the world with oxygen & serving as a LAM ambassador to different countries, meeting sisters from all over the world. It’s been fun tracking her travels.
I feel like I’m traveling vicariously when I read her blog, which is great because I’m listed I have a two-hour radius travel restriction since I’m actively listed.
So it’s nice to escape.
I left social media recently due to some shaming & bullying. It was just too negative overall lately. Even with articles that I used to enjoy reading & some pages it just seemed there was a negative feel to it & that any post or article anyone bothered to put up, someone had an issue with.
It wasn’t just the election, but that definitely made it worse.
I had to cancel my appointment with Johns Hopkins because I was sick. I’ve been sick since about last Wednesday night, but went to the doctor Thursday. I’m still recovering, but I knew even on Monday I wouldn’t feel up to going to Baltimore yesterday.
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.
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)
In case it was missed by a few of us (when it happened), the American Thoracic Society (ATS) & The Japanese Respiratory Society (JRS) along with an ad hoc committee of experts, updated guidelines in LAM treatment in May 2016.
The new guidelines can be found here.
For my women with both TSC-LAM & sporadic LAM I encourage you to provide a copy to your doctor or email them the link if they aren’t aware it has been updated & you receive treatment outside a LAM Clinic.
Just because of past experience working at Medscape, I know pulmonologists & other doctors often have their hands full sometimes keeping up-to-date with these changes with everything else they are managing. It can’t hurt to remind them, to be sure your testing & surveillance is current.
Also, it was announced at LAMposium, that the Lymphangioleiomyomatosis (LAM) wikipedia page was given a major face lift with more current & up-to-date information, which is a good thing, since it needed it for quite some time.
(Image credit: NIH)