This post is dedicated to you, Whitney. We miss you and carry you with us.

This photo is from 2018. Whitney was in town for a follow-up visit to see Dr. Burt and pick up some records. She was like the little mother of our transplant group from summer of 2016. Sadly, she is no longer with us and we all miss her. While HSCT did not work for her autoimmune disease, she pursued another treatment. It was an amazing story and I thought she was going to make it. I was devastated to learn that she didn’t.

It’s been almost 8 years since I posted an update. A lot has happened….for the progress of HSCT as a more recognized treatment, in my own recovery, and in my own life.

The progress of HSCT

Because I am back living my my own life I don’t follow the HSCT Facebook pages very closely anymore.

The best site I can recommend is HSCT Warriors. They keep their site up todate with all kinds of resources with all of the latest treatment locations, podcasts of interviews with HSCT patients (warriors), and more. I have an interview on there somewhere too. Visit the site at hsctwarriors.org.

Recovery

My recovery felt like it took FOREVER. I had the transplant 6/6/16. I tried returning to work in March of 2017 and it was too much. I tried again in 2018 and it was still too much and it was time to change career paths.

I changed careers and started working in summer of 2019. Things were getting better but I struggled with vertigo, fatigue, and brain fog and I was nervous about it. But by the end of 2019 I was feeling pretty good. And I’ve continued to do well. I feel better every year and I’m incredibly grateful. I often forget about the MS at all.

I have osteoporosis and I broke my elbow in the summer of 2024. I’m now getting infusions. I also have scoliosis and I have a hard time sitting for too long so I use a standing desk and stretch a lot.
I still occasionally feel some old MS symptoms like numbness or tingling or the occasional vertigo but it’s less and less frequent and I take it as a reminder to slow down.

I still get MRIs every year and visit my neurologist because I need to hear that I’m still in remission. I’m not sure I’ll ever be able to stop looking over my shoulder to make sure MS isn’t following me.

I still hold my breath when I see a facebook post from a “stemmie brother or sister” with an update. Most of us, from my group and those I read about, are doing great and are back living our lives with varying degrees of symptoms from past damage. But we’re still just lab rats aren’t we? We don’t know how long this will last and if something will trigger our immune systems to wake up the MS. I’m terrified of vaccines for this reason. I’m not against vaccines in general….I’m just not willing to take a chance of waking it back up.

My Life

2020 was the worst year of my life.

In January I lost my dog,

In March I lost one of my closest friends.

In May I lost my aunt.

In July I lost my sister.

I haven’t recovered from 2020 yet. But…..I’m functioning, I’m grateful for my health, my family and friends, my two dogs, my job, and life in general.

I’m hoping that my next post will be closer to thriving than surviving but health wise I am doing really well and am forever grateful to Dr. Burt.