September 29th, I have been discharge day from the hospital. September 28th, I was in incredible pain even though that day my white blood cell count was below zero. I woke up on the 29th and I was at .07 white blood cell count, they took my blood after noon and I was at 2.2, what?! ha ha, so time to go home. FYI it was my Day +8. It happens quick, once your blood cell count goes up it is time to go! At noon, we packed up everything in suitcases with anticipation of being released. Around 4pm, my PICC line was removed and it doesn’t hurt, so no worries people! Sergei bought the tickets back to Dallas that afternoon and we flew out at 10:30pm (thank you American Airlines for bumping us up , and letting us to sit together). So does this make me HSCT veteran now?
I am very thankful to Worcester House (Ken and Bruce), Northwestern, all the amazing nurses, all the PA’s, especially Kaitlyn Leska and Dr. Richard Burt himself. To be honest with you there are so many people to thank, really thank you everyone! This has been a crazy, emotional, challenging experience for which I am thankful to have given a chance to be part of.
So now we wait, wait for me to gain my strength, my immune system, and hopefully, hopefully this will stop the progression of my desease, everything else will be a cherry on top.
I am not going away, there will be more posts and videos, like it or not 😛
So this video below is something I told I will do for Sergei but of course, how could we not tape it?! I am singing I Will Survive (me telling MS to F OFF!)…wait for it…on helium, of course!
Sergei is working on his project to raise awareness of autoimmune diseases and HSCT. It is all shot with his 4×5 film camera, on black and white film. Like in old times!
Today he worked with Lisa, who was kind to donate her time to this and take part in this project. You can contact either one of us (me or Sergei) if you like to know more of the project, take part in it or would like to be part of venue to show the finished results, once project is done. We right now in Chicago, but later we will be back to Dallas, and we doing road trips sometime, so we can meet up and make things happen! Please help us to move this project forward by participating!
As we get home first batch of film will be developed and portraits and stories will start appearing on specially designed website.
So as I am sitting, watching people going around their daily business, sipping tea.
It came to me that in so far our videos and my posts were more of the monologue. Let us turn this into more of a dialogue.
So question to all of you, who read me here, on website. And please respond here, not on the Facebook, if it not too much trouble.
– what would you like to hear about?
– would you prefer to see it as a video or as a text?
– if you are MS patient – do you care to share your story? At least a little bit?
And of course.
– if you do use cane – are you doing Cane Wave ?
So as we nearing end of Day+5 – we decided to shoot new video, kind of show off how I am doing and talk a bit about what is going on on Day+5, specially after whole scare with fire in hospital and platelets dropping.
First of all – no worries, I am doing much better tonight than I did in morning, thank you for all the kind comments and wishes. Platelets still low but I got supporting IV medications and it helped a lot.
Taking shower is not to be discarded too. I also did few rounds around floor. But more is in the video.
We are just sitting here, chilling.
The alarm going off, there is a fire on the 10th floor. Firetrucks are pulling in from all directions.
So, you know I am on the 16th floor, the fire is on the 10th…does it make you nervous? Me…just a bit…yeah…
I hope everyone is safe and this will blow over really quickly.
Just thought I will post a picture of the PICC line closer up. Grrr that bugger! Didn’t have any range of motion in my right arm for at least a week. Not a fan. I will be one happy girl when it finally come out! 🙂