I have been short on updates lately, sorry.
So we decided to record this video to talk about end of the year results, current and not so current events.
Fired, new job, legs and general life. All is there. And of course
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,
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.
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.
It is post HSCT Day +12, no more fever or excruciating pain (but still not pain-free, unfortunately).
I do have other unpleasant symptoms. Constant nausea, I do have two different medications that I am rotating but it does not seem to help. I also have diarrhea for over 24 hours, any veterans experienced diarrhea post HSCT?
I get winded very quickly, 10 minutes kind of quickly. Went to the store with my mom, 10 minutes later I was holding up one of the counters, you know just in case it was going to fall 😉
I know this will take time and I am not running any marathons right now, so I will take it easy now.
Love Always, Lana
So, here we are. Day +10. Third day of engraphment, third day of pain. Temperature jumping up/down like a rabbit, but it doesn’t look like i am sick, looks like body still going through the growing process, even though its been 72 hours since last neupogene shot.
We did video, sorry, its a bit less light hearted than previous ones, but thats what life is like right now.
But its all for the greater good, right?
If you already went through this phase after HSCT, specially with MS – please, I would love to hear your experiences too (and about pain relieve too) , because it is a bit scary, as I suddenly realized how vulnerable I am right now to anything that is out there.
My husband just came back with loads of antibacterial wipes, soaps and what not, laid it around the house.
Life goes one. Happy Halloween, folks. Happy Saturday.
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!