All posts by lpiller

5 months follow up post HSCT

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/

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

Let’s talk about sex, the struggle is real :)

Hello Ladies!
This post is for the ladies, and gentleman those of you that might be effected as well by multiple sclerosis.
As many of us know the struggle is real and has effected our sex lives. Does it get better, do you get the feeling back?
For me it did, oh it is so nice to have the feeling again 😀 I hope it is the case for many.
Menopause is a nasty bitch and got to ride that wave.
Here is a short video for you all, sex post HSCT and I would love to hear your story. Please, leave a comment!

3 months birthday!

Hi, everyone.

So here it is +3 months birthday today. 3 months since I got my stem cells back and they started reboot – Lana 2.0.

Time flies by faster now. I caved in and went to work for new company, and its been 2 weeks now, and so far , while being tired – I manage it quite well and everyone is happy.

We shot short new video to talk a bit more about how I feel, what current conditions are , what I got back so far (of what I lost with MS).

Continue reading 3 months birthday!

Post HSCT Day +29


Hi All,

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,

Lana

Day +25 post HSCT

Hello Everyone!

I am day +25 post HSCT.
Out bodies are truly amazing. The recovering has been a roller coaster, just like everyone says 🙂
I been feeling same side effects since I came back, except it has been explained today. Side effects are nausea, diarrhea, other GI problems, hard to catch my breath, chest pressure, extreme fatigue (I am out of breath going from the kitchen to the living room, dizzy and exhausted), I also got conjunctivitis (even though the infection cleared up, my eyes still hurt and feel heavy), headaches (feel like someone drove a nail to my head), I will stop here…I am sure I can think of more. Anyways! I got a call before 8 am today from PA, Kaitlyn Leska and they have my CMV results. Let me explain, my first CMV results were not done correctly so, at last they are here. AND! CMV that is dormant for most people, has a chance to come out due to low immune system and I got it. You know what I am relieved to know this, because I thought I was nuts, well so did Dr. Burts office. I am not crazy everything I am feeling and experiencing is due to Cytomegalovirus (CMV). This is not a big deal, if it wasn’t caught it might have been but that’s why we do blood tests when I come back. So if you are about to go through this just know, you will be ok, they take care of us. This will be taken care of by taking a different antibiotics. Kaitlyn hopes I will feel better in a week and so do I. So no worries, don’t stress, not a big deal.
Here is more info about CMV http://www.medicinenet.com/cytomegalovirus_cmv/page2.htm#what_is_cytomegalovirus_cmv
Now good news!
Speaking of noticing the difference. My incontinency is almost gone, I can’t believing I am actually saying this, never expected this… I am not soiling my pants, and I am not scared that I won’t make it to the bathroom, I can actually hold it. This is amazing news, it is such a life changing event for me! So, this alone is worth it! Thanks, to Dr. Burt and his team, exciting…very exciting.
I am looking forward to noticing more changes, I hope 🙂 So this is it, if this is the first time you watching my video, or reading this, you can see more on lanapiller.com, I hope it will be of help to any of you.

Day +16. Reflection.

Two week ago it was hospital. Weakness, IV fluids, medications, constant machine noises, beeping, people walking on the floor, fear. Today it is full one week since we are back home. Pain subsides a bit, my stomach still feels funny, and fatigue is there. OH, FATIGUE..

I wonder how long it took for you, other HSCT veterans, to feel at least a bit more energetic?

Looking back photos, that Sergei took in hospital with his 4×5 film camera.

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