First off, Happpy Birthday to my fellow HSCTers… j. & M. (Mon and Tues) and (D. S. and W. today). We have a good group here!
So it’s day + 2 and I am doing well. Thank God. I’m spazzy from the steroids, a little tight chested (or short of breath – not sure) in some bone pain and have blurried vision from the steroids, but I haven’t had a fever so I will take it!!!! My blood was low today… Around 8.1 so I got 2 bags. I would think all the vampire movies would have prepped me for this, but I was still grossed out. I didn’t look for the 4 hours I got the blood. They said it may give me energy and feel better. I am happy to feel like I am today. My white cells were at .1 today. Tomorrow they should be TLTC (too low to count) and after that we start watching for them to go up. When they hit 1, I’m free! That’s probably in another 8 days or so… On average.
I was getting a bunch of mixed info and I was so freaked out from the steroids, I figured I better go right to the source. I sent an email to Dr Burt’s PA (and my fave) Kaitlyn asking her some questions I’ve been wondering. I was sure to say that everyone is different and I was just asking for the typical and cookie cutter… I also realize I’ve never been cookie cutter. Lol
1. What is the typical theme for rATG fevers and reactions….
She said some people spike high a day or so in a row, some low for the same, some don’t run a fever at all, but at that she feels at this point… I’m in he clear for RATG fever… Thanks to all the roids and medicine. If I do, it will be from an infection or sickness and that happens when counts are low… That’s what we want to avoid and that with MS, we want to stop the fever while it’s nice and low, so that’s what we aim for. I’m happy to hear that.
2. Bacteria Cultures – When I ran the fever, the took cultures for all sorts of illnesses. They take 5 days usually to come in but they can see if something is growing in a day or two. What’s with mine…
So far so good. If all stays this way tomorrow, she will cancel the extra antibiotics that were ordered the other day. The smear also came clear.
3, I’ve had some outstanding tests that were sent away… Any news…
So far they are still waiting on some. What Dr Burt is looking for is another underlying disease with the MS. In this case, Lupus. He is concerned with the eye pain I have experienced in the past and when I first came in. The good news is, if I have Lupus as well as MS, the HSCT protocol will work for this as well. He will just add a drug (ratoxin – I’m sure I got that completely wrong) before I leave. That will halt the Lupus (God willing) as well. It is not uncommon for Auto Immune (AI) disorders to stick together. I have very early hashimitos (thyroid AI) that was found by accident while screening to make sure I didn’t have thyroid cancer like my mother did (also found by accident when she had her esophageal cancer surgery 7 years ago). My thyroid counts are normal and the effects of this are many years away (Actually, I have no idea the impact of the HSCT on this… So who knows) but Hashimotos is very common in so many people and not something to worry about. We will know in a few days about this.
So what was the best thing I heard Kaitlyn say… She said “Colleen, typically this is the point where you will start getting bored!” I love it. Bring it on… closer to boredom is the closer to home!
I thank you all again for all the prayers and love (please keep them up). I thank God for my amazing Neurologist in San Antonio (Dr. Gazda) and her fellow genius Dr. Burt and team here in Chicago. Today I believe I am on the home stretch. We can do this!!!
PS – Today is a big day in my family! 7 years ago today I was given my adoption referral for Rosie. Basically, that was the day I first saw her picture and heard specific details about her. Still one of the best days of my whole life!