All posts by lpiller

3.5 years post HSCT follow up with Dr. Burt

So here you go.

Yes it can be Secondary, or it maybe an infection.

He does want me to take antibiotic for a year to clear up my chronic infection.  By the end of the year I will have a hole in my intestint, woot! Maybe but I got to do what I need to do. Within a month I will know if it is an infection causing my legs to worsen or I am progressing. We shall see. Here is our entertaining video as always.Watch me

 

3.5 years follow-up post HSCT with Dr. Burt

Hello All,

Been a while, my fault. We have two takes for the video as Sergei thought the first one wasn’t happy. So pick whichever one you want to see or both, suppose second one has more content.   These videos shot before we have seen Dr. Burt. Lots of nervous jitters, lot of unknows to this follow up.

Take One 

Take Two

I also would like to remember Karen Bryan. It is hard to believe that she is gone. Scleraderma took her life, but it didn’t win over her.  May she rest in peace.

2 years and 9 months post transplant update!

So it’s been a while. Life goes on.  Really don’t have much to complain about, regular ups and downs. Good days and bad days, more good than bad.  When it’s bad – it is bad and it is scary but then it gets better and life is good again, watch my update. I’ll be forever grateful for having the transplants and here is my update to 2 years and nine months post stem cell transplant with Dr. Richard Burt. Love you guys, we’re always here for you!

Love Always,

Lana and Sergei

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.

Feeling alive again

Hello!

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!

Hitting a major hurdle – flu

Hi,

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!

I will update as soon as I get to feel better.

Love Always

Sergei and Lana

Happy New Year! and a little update :)

Happy New Years!

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.

Love Always,

Sergei and Lana

 

One Year Follow Up News!

Hello All!

Straight from Chicago, one year follow up update!

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!!!

10 month update and speaking my truth

Hi

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.

Meeting amazing people while in Chicago, different phases of HSCT

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.
Love Always,

Sergei and Lana

Happy Birthday to all the peeps!

Happy Birthday!
Happy Birthday!

Carina, came in for her 6 month follow-up
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Bobbie Jean you stole my heart, what a beautiful soul you have!
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Lee Lee, saucy and spicy lady! At the time of our visit, awaiting transplant, you go sister!
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Jackie, sweet, kind and beautiful woman, had her transplant the next day of our visit. Happy Birthday gorgeous!
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Jay! An inspiring young man, so much fire! Just finished his mobilization.
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Tonya, beautiful young woman, has a whole life ahead of her to be free of the monster! Just finished her mobilization.
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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!
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With Boys! Daniela’s hubby, what a sweetie!
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Bros!
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Jordan, sweet and smart young woman, had her transplant that day!
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