Hello!
We are going to be in Chicago on Monday the 21st of this month until Wednesday for 5 months follow up with Dr. Burt. A month ago new symptoms started to come out, feels like a relapse, but who knows! So, got a call from Dr. Burt and he asked me to come in. So here I come! While we are there would love to meet anyone and everyone who is there in Chicago. Please, see the video and leave a comment if you are available or would like us to come by.
Also some additional links that we speak of in the video:
http://www.facebook.com/facesofmultiplesclerosis/ (this is for all auto-immune decease not just MS
http://www.facebook.com/events/1707002529517763/
Tag Archives: chicago
4 months post HSCT, the good the bad and the uglyyyy
So…4 months post HSCT. I think for a lot of people, can’t speak for everyone, issues do come out after month 3. I happen to be one of them. Perhaps it is due to steroids wearing off or chemo, I don’t know, it is not my field of expertise but it does happen. My balance has started to shift again, the gate of a puppy or a baby, looks funny. Legs feel like led, by the end of the day I truly do not want to move. The crazy fatigue is back into it’s full force, some days it is truly worse then others. UTI is back, woot! I suffered from incurable UTI prior to transplant, and seriously it was incurable, I could take huge dosages of antibiotics for it to return in two weeks time at best. So here we go again!
I am going back to Chicago this month to see Dr. Burt. He called me out of the blue asking me questions and wants to see me now, to evaluate the current situation, lets hope this is not a relapse, hope…
But hey, it’s life, it throws curve balls at you and I take it, one hit after another, sometimes I even come out stronger, and sometimes it takes me down, down on my knees, whipping, begging for it to stop. Bring it, I take it, I can do it all, right? Yeah…sometimes I can. We are all allowed to be weak once in a while, otherwise, we fight, we move forward and we make lemonade out of lemons.
Love Always,
Lana
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 +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.
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 ?
HSCT Transplant Day, Day 0 – Dr. Richard Burt
HSCT Transplant with Dr. Richard Burt is completed.
It still is the best, physically well that I felt to date.
The transplant it self is not very eventful. It takes 20 minutes compare to 5-8 hours for harvest the stem cells.
I talk about how it felt and what is next.
Love Always, Lana.
Stems Cell coming home!
Me during the actual transplant. Kaitlyn Leska, PA for Dr. Burt is next to me and she is talking me through it.
Day +1, HSCT Transplant is around the corner!
Day +1, Transplant is around the corner for HSCT with Dr. Richard Burt. Day +1 was a good day, I was freed from cath and had a couple of hours of nothing running into my veins. Nausea and fatigue was rough but that is to be expected. I cried a lot that day, thinking of my family an wanting to see them and hug them. Thought about the meaning of life and what is important in this life. It’s almost like here is the point when you will start a new life, so re-evaluation and analyzing was in order for me.
Love Always, Lana
Part 2 – HSCT Transplant
Here is the Part 2 video, it is a good video to watch.
So, basically I am admitted to the hospital for HSCT Transplant with Dr. Richard Burt and the countdown begins from day +5, Day 0 is your transplant day and everything there after is Day -x.
I talk about what the admission entails and other details. Please, leave comments, questions and feedback.
Feeling Scared, overwhelmed to start the transplant
So, I got to go home for 11 days after my mobilization and harvest.
The time was ticking and I started to feel emotional about leaving my family and being gone at NorthWesten for HSCT with Dr. Richard Burt. A bit of fear kicked in as well. So I made this video, the message is that it is ok to be fearful it is a normal reaction, so I asked for everyone just allow me to feel it.
Love Always, Lana
Harvest at Northwestern with Dr. Richard Burt
Finally the Harvest time at Northwesten for Clinical Study with Dr. Richard Burt.
Nuepogen shots were done, it hurt, it hurt really bad for me but it is different for me.
I will add a few more video about the harvest shortly.
Love Always, Lana