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.
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.
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, sexpost HSCT and I would love to hear your story. Please, leave a comment!
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
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.
So as we nearing end of Day+5 – we decided to shoot new video, kind of show off how I am doing and talk a bit about what is going on on Day+5, specially after whole scare with fire in hospital and platelets dropping.
First of all – no worries, I am doing much better tonight than I did in morning, thank you for all the kind comments and wishes. Platelets still low but I got supporting IV medications and it helped a lot.
Taking shower is not to be discarded too. I also did few rounds around floor. But more is in the video.