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
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.
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.
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
Sergei is working on his project to raise awareness of autoimmune diseases and HSCT. It is all shot with his 4×5 film camera, on black and white film. Like in old times!
Today he worked with Lisa, who was kind to donate her time to this and take part in this project. You can contact either one of us (me or Sergei) if you like to know more of the project, take part in it or would like to be part of venue to show the finished results, once project is done. We right now in Chicago, but later we will be back to Dallas, and we doing road trips sometime, so we can meet up and make things happen! Please help us to move this project forward by participating!
As we get home first batch of film will be developed and portraits and stories will start appearing on specially designed website.