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.
The flu has passed, really felt like Black Plague! Had fever for 6 days, walking was pretty much out of the question, see post previous to this, all the old symptoms were out to play. So! Once the fever dropped, after 6 days, I was able to recover. So here I am, I even skipped for you in the video. Life is good again!
So on 14th month after HSCT I have hit first major hurdle in my post-transplant physical state. Flu came to our house and took me down. As one would expect – its flares back MS symptoms. Unfortunately – I am not the One, so it sort of came unexpected.
We shot this short video to discuss my current state, it is far more stuffy and less cheery than our usual ones, but I think it is important to document this moment, and to share some thoughts and findings.
Other than that – life goes on. I hope to get better soon and for all the nasty symptoms to go away ones again (as I have been told they will).
This is not meant to discourage those that are embarking on this journey or wanting to/planning to. Not at all, keep on applying and get it done!
Sergei and I wish everyone a healthy and Happy New Year! May your all dreams come true! Wishing you all never ending love, to be at peace and creativity to flow like a river! Your families to be healthy and happy!
As for the update: I am doing great guys! For four and half weeks been at the gym five days a week lifting weights. I am stronger and happier (loosing weight helps too). I am starting my new job on January 3rd, very excited, Tier 1 Automotive company, woot! Life is good and we should not waist a moment. I am forever thankful for Dr. Burt and his team.
If anyone needs to talk about HSCT, please do not hesitate to reach out to me.
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 been holding onto updates for whole summer, one reason or another, but it is September!
So lets start autumn with talking about how things are and also do some heavy and may be a bit non-traditional thoughts about HSCT as a cure for MS.
We will be in Chicago October 25-28 (most of the day on 28th), we would love to see everyone who is going to be there, also please see link if you would like to participate in this Faces of Auto-Immune Diseases .
If you see my post for the first time and would like to see my journey from the beginning, you can find it here Journey to there and back.
While we were in Chicago, we met up with amazing people in different phases of HSCT process. Some of them are in the hospital, either had a transplant or about to. Others were waiting for evaluation, few gals were awaiting insurance approval.
It is amazing to meet everyone and feel such hope, full of dreams and possabilities. It was truly an honor to meet each and everyone of you.
Sergei and Lana
Happy Birthday to all the peeps!
Carina, came in for her 6 month follow-up
Bobbie Jean you stole my heart, what a beautiful soul you have!
Lee Lee, saucy and spicy lady! At the time of our visit, awaiting transplant, you go sister!
Jackie, sweet, kind and beautiful woman, had her transplant the next day of our visit. Happy Birthday gorgeous!
Jay! An inspiring young man, so much fire! Just finished his mobilization.
Tonya, beautiful young woman, has a whole life ahead of her to be free of the monster! Just finished her mobilization.
From left to right, Ellie, Maureen, Daniela, your truly, Bonnie, an amazing group of women, you made my heart so full. I cannot wait to meet all of you when I come back for a yearly check up!
With Boys! Daniela’s hubby, what a sweetie!
Jordan, sweet and smart young woman, had her transplant that day!
Realized today that I have not updated my blog.
Met with Dr. Burt and Dr. Balabanov last week on Wednesday.
I stressed my self out to the point where I had ice pick headaches, pain in my ear, just drove myself nuts. It was truly scary, did it work, did I do this for nothing, what if I still have active lesions and on and on. Sergei was thinking same thing, making plans for what if.
So my appointment day. I do not even remember what Dr. Burt said or asked. I just remember him sitting down and saying no new activity and old lesions shrinking. That moment I collapsed into Sergei’s arms and tears poured out. So much relief, bricks fell off my shoulders. HSCT, stem cell transplant worked, sweet words of remission. Since my diagnoses I have not been in remission, it was a relapse after a relapse. I do not have enough sufficient words to express accurately how it feels. It is surreal, I can dream of things I use to dream, I have a chance at life without limitation. Feels unreal.
Met with Dr. Balabanov next, he confirmed what Dr. Burt said, he was elated with how well I am doing. My EDSS score dropped down so significantly.
With all of those news, I do have to see a bone doctor and get an MRI on my hips. Steroids and chemo might have did them in, hip replacement is one of the options if it will be confirmed. However, I am not looking to do it until I cannot move!
The news of remission cannot darken anything, I can live with bone pain, I am not progressing, I am regressing 🙂
So news are fantastic!
Thank you to everyone for your support, all the kind words,to everyone who lifted my spirits and showed me so much love, Thank you!!!
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.