Tag Archives: multiple sclerosis

18 months post HSCT – stillness and liveness

Hello everyone.

It has been now 18 months since my HSCT at the Chicago with Dr. Burt. We shot this short video from our road trip to share and talk about current happenings and just reiterate some thoughts and to answer some question too.

As always – please do not hesitate to send us your questions and comments. And even concerns, as you might have some, about HSCT and whole MS situation.

Thank you very much for watching, for talking to us and for following my journey.

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.

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.