Monthly Archives: October 2015

HSCT Discharge day from the hospital!

Hi all!
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!

Here is us, saying goodbye to Chicago

Day +8. Dawn of new era

Night was rough. Not much sleep till later, morphine help, threw up couple of times. Couldn’t stand up to walk to bathroom.

White cell count taken at 2pm. And its finally more than 0.1! its 0.7! Meaning recovery starts.

Doctors just came in, I am stopping neupogene shots… Hurrah! And I am going to get morphine because pain is still there. Double hurrah!

New era. New me. This is look from the side window today, above lake Michigan.
sunrise on Day+8
Every sunrise is a hope for new beginnings. For new life.

Recovery road is going to be long and windy and rollercoaster , according to many.
But at least I will be not locked in hospital. And I will be with my family.

Day +7 OMG pain!

So after the fun with helium from previous video and upon returning to room pain hit. Real pain. Bone pain. From waist down.
Can not walk. Shouting from spasms. Yelping. All that.

In between of yelps and shots of pain we tried to record this video.
Fair warning – it is a bit raw, with some cuss words tossed in, sorry. Filters off when pain hits that much.

About hour after video was recorded oral morphine was finally prescribed. Edge is slowly receding but pain is still pretty bad. There is some hope for sleep tonight.

On positive side theory is that if you hurting – your white cell count goes up. Fingers crossed.

Making things happen: Sergei is taking pictures for his project

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!

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As we get home first batch of film will be developed and portraits and stories will start appearing on specially designed website.

We need your help! Question of the morning

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 ?

Doing rounds on day +5

Day +5

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.

Doing rounds on day +5

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.