HSCT Journals

Two Months+ Post HSCT Update

by | Apr 30, 2022 | Blog Posts, HSCT Journals | 16 comments

So much has happened, both fantastic and a bit not so good. When that happens I don’t always know how to assimilate it all, and thus, stay silent. Here’s my update….

First, for the awesome part. Over a week ago I had an appointment with my neurologist. Luckily, I snagged a cancellation, found a drive (2.5-3 hours each direction) and saw him in person for the first time in 2.5 years. I wanted to connect about my treatment, have a neuro assessment, plus if time allowed, measure the maximum distance I could walk.

Well….I walked 150m! It was all on my own, no walker, no grabbing walls, no staggering, no leg dragging, no resting, and it was on terrain I’d never walked before (new terrain is typically terrifying for a MS brain, and often body function disintegrates).

My MS neuro, Dr. Anthony Traboulsee (yes, I have permission to use his name publicly) walked beside me pushing my wheelchair in case I needed it. We chatted lightly as I walked (felt SO good being at eye to eye level), and if I were to ever relapse again (hopefully NEVER!) we might consider giving me the same chemo I had in MX (Cyclosphomide) instead of high dose steroids (Methylprednisone). Cool.

After the walk, I think our combined astonishment at the distance, we didn’t know quite what to say except ‘wow’, and grinned ear to ear. I’m so grateful of his support of my wanting to try anything and everything to try and get better. I adore him.

I do not remember the last time I walked that far. Years. I felt pretty balanced when I walked, focused and walked until I knew I would lose feeling from the waist down; that’s my queue to stop.

I have been bursting with excitement to share this milestone with everyone for the last 10 days, but held back as I wanted to make sure I could still walk this week, plus I wanted Dr. T’s report on the consult.

My new EDSS is 5.5! This is amazing and down approximately 2-2.5 points from last year which is unreal. Here’s a link to understand the scoring for those unfamiliar with it: EDSS

My 25 foot timed walk was 6.6 seconds, but since I couldn’t walk 25 feet last year I have no time difference to share 😉 It simply felt very fast for me.

Second, the not so positive stuff was a return of two symptoms. The first one was a re-awakening of my bone pain. It was initially just at night, keeping me up, writhing, and then began to ‘infiltrate’ my daytime. It’s a tough type of pain to control. I can only ascertain it’s my bone marrow working hard to produce cells and rebalance my body’s immunity.

The other thing that popped up again two weeks ago was extreme distension of my abdomen, upper abdomen pain, some swelling in my feet/legs and quite a bit of water gain. It’s super uncomfortable and mentally disturbing.

I was told to go to the ER by my doc’s office, but couldn’t face the thought of more IV’s, tests, poking, proding, etc., so I kept an eye on it (although not hard to miss as it stuck out so far ;-). For sure if it got marginally worse, I would have no choice, but to go to the ER.



LUCKILY, these last 3 days the issues have decreased a lot so I’ll assume it will fully resolve. If I could have stuck a needle in my belly to suck out the fluid, I would have done it. Dang, this recovery period is tough at times for me. I knew there were going to be up’s and down’s. It’s hard mentally though to keep a grip on.

I’ll chat about my crazy science project of a hair re-growth situ in another blog post (haha).

This video was my first attempt at walking outside, with no walker, since my neuro visit 10 days ago. Super encouraging!
Click here for video: walking on April 28th.

Here’s a pic of my belly at the start of it (I know, it’s gross)

Happy Pic Post Neuro Appt

16 Comments

  1. Dave S

    Great time on the 25 yard dash…. You can likely flee a burning building now 👍
    Your belly isn’t gross ….
    Let’s just let those bones continue to churn out the new and improved bloody bits and you will be playing pickle ball before you know it ❤️❤️❤️❤️❤️

    Reply
    • Jenny Angus

      Always hilarious! Pickleball sure sounds good 🙂 xo

      Reply
  2. Amanda O

    This is so incredible! You look so confident and steady on your feet.
    Amazing! Well done friend.

    Reply
    • Jenny Angus

      Thanks my friend XO

      Reply
  3. Nola

    Well done. You are seeing positives and this is the best. Yes some not so goods. Bit as you said your weak body is working hard to repair. Its gonna take tine and have side effects.
    So happy you got to see Dr Anthony.
    Xx

    Reply
    • Jenny Angus

      Thanks Nolagirl! 😘

      Reply
  4. Kristen

    Sooooo very happy for you!!!
    I have PPMS so I understand the excitement!!!!!!

    Reply
    • Jenny Angus

      Thanks Kristen!!

      Reply
  5. Rachel

    Amazing update on your walking!

    Reply
    • Jenny Angus

      Thanks 🙏

      Reply
  6. Sandra

    My beautiful friend…I am soooooo happy for you! Look at you walking! So beautiful and pretty in pink! Sorry to hear about the return of two yucky symptoms. Sending you hugs and positive vibes ❤️ i was relieved to read that the last three days have been better. You rock!!! Love ya!! xoxo

    Reply
    • Jenny Angus

      Thanks darling 😘

      Reply
  7. Marcia M

    Hi Jenny
    So great to see your walking video. What surprised me more than the walking distance is the squat you just did before and after the walk. This is amazing to see and so positive. I am happy to hear your other symptoms have subsided again. You look great and happy which is so nice to see. Keep up the strong recovery. You are doing amazing!!

    Reply
    • Jenny Angus

      Thanks Marcia!! ♥️

      Reply
  8. Mich

    You know I already knew all this since you had written right after it happened. Thank you for sharing that with me right after. I feel so privileged 🙂
    You look great even with your water belly but sorry you are not feeling great. Man, if I had a magic wand to take out the fluid or even better take all the pain away I would. I’d actually take away all the the MS of course but magic wands these days might not work to heal everything lol!

    Please let me know when I can come and visit! xoxox

    Reply
    • Jenny Angus

      You’re a real gem Mich! xoxo

      Reply

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