Oh hey. I just finished my 2nd week back in the office. Commuting 3 days into the city and working from home with @Reesesthedog1 as my assistant 2x a week. I still have to go in for labs a little more frequently as we get my Tacro levels stable. Too high = Toxic vs Too low = Risk for Rejection

FUN.

So what does it feel like to be back at work? Well honestly it feels pretty damn great to get my life back together. And the moment really hit me on my first PATH train commute to the office. I had not been on the train since late January. The stars aligned and an empty train pulled into the station and I was able to grab a seat. As I looked around (in my sunglasses and vogmask aka serving FACE) - a few tears snuck out. No - I wasn’t crying because I love the PATH train so much. I was getting emotional because this was my old normal routine that at times I was very scared I would never get back to. This was a huge milestone in my marathon to recovery. Another basecamp check point on this post transplant recovery mountain.

Am I still tired? Yes. And at times it can be hard to manage. When you spend so much time limiting what you can do - because you literally CAN NOT…it’s hard not to TURN UP when you think you can. Not commuting everyday is definitely a huge life saver. The trick is not to fill those rest days with errands and activities.

Am I still dealing with side effects? Yes. Some have gotten better and we have some new ones to welcome to the club. Tremors and Night Sweats are better. Tremors are more like occasional vibrations (my body is a Kazoo) and the night sweats are no longer every night. Biggest complaints right now: leg/foot cramps, hair loss and skin sensitivity. When I come out the shower - I have about 30 minutes where my skin feels like it is being attacked by red ants and scorpions. It drives me crazy. Like temporary insanity. So when you see me on the next episode of Snapped on the Oxygen network please be sure to write me letters. Luckily it is not an all day thing.

In other news, I am really excited to be a part of IgA Nephropathy Foundation of America. They are a volunteer based organization with a goal to not only fund research but to help families along their journey with IgA Nephropathy. The NKF and IGANF are conducting an EL-PFDD meeting on IgAN to inform the FDA on the patient perspective on living with this disease. Understanding the patient perspective will help the FDA when it decides whether to approve potential medicines for IgAN.

THIS MEETING IS FREE TO ATTEND.

The meeting will convene patients, care-partners, individuals from the FDA and pharmaceutical companies, and doctors who specialize in IgAN. These participants will assemble to hear from patients, in person, what it's like to live with IgAN.

The meeting will be on Monday, Aug. 19, 2019 from 9:00 AM to about 3:30 PM at the College Park Marriott Hotel & Conference Center in Hyattsville, MD.
There will be an informal pre-meeting buffet dinner on Sunday, Aug. 18, 7:00 PM at the hotel.
If you cannot attend the EL-PFDD meeting in person, you can join by webcast, but you will not be able to participate in the discussion by webcast.
During EL-PFDD meetings, only the moderator, patients, and caregivers talk; everyone else listens.
The agenda consists mainly of two patient panels and audience discussion sessions on living with IgAN, treatments for the disease, and clinical trials for IgAN.

THIS MEETING IS FREE TO ATTEND. IF YOU CAN’T ATTEND IN PERSON - PLEASE JOIN VIA WEBINAR

Jack and I will be in attendance and we hope to see you there too.