Yesterday we saw Dr. Burt for one year follow up of HSCT. Drum Roll please! I am still in remission! No new activity, which means no new lesions or active lesions 🙂 Unlike my 6 month follow up, where my lesions shrunken, this time there are no changes, just as I was. This is my first year after a decade, more then a decade where I had no active lesions, or any new lesions. This is amazing and I am the luckiest!!!
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.
So, post HSCT Day +29. Feeling…good and bad?
I see improvements once I get past the unpleasant symptoms.
Positives: walking better, peripheral vision in the right eye is coming back. I would say that is remarkable: beating MS.
Unpleasant symptoms: dizziness, shortness of breath, chest pressure, GI problems, nausea, lethargic.
I would say the positives out way the unpleasant symptoms.
More of everything in the video.
Love Always and forever grateful to Dr. Richard Burt and the whole team of Northwestern,
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!
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
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.
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
Here is a video that is a must watch.
This video was made after mobilization at Northwestern for HSCT with Dr. Richard Burt. I go into fairly deep explanation what it involved and what will come in the next few days. From chemo to other medications, what am I am expected to feel like and so on.
This is Part 1.
This video came along very naturally to us. Sergei and I hear from the patients as well as loved ones, and it is hard to maintain a strong, loving, lasting relationship while facing a scary monster(such as Multiple Sclerosis in our case) that can attack at any time. So here is our perspective on it, how we make it work, it’s honest and raw. I hope you will enjoy. Leave your comments!
Love Always, Lana