Support Kelly Kinney’s HSCT Journey!
Five years ago, Kelly was diagnosed with Transverse Myelitis (TM). Kelly’s immune system is overactive and attacks healthy myelin protecting the nerves in her spinal cord. A year ago, Kelly’s diagnosis changed to Multiple Sclerosis (MS). An autologous Haematopoietic Stem Cell Transplant (aHSCT) is Kelly’s best chance of stopping further progression.
Updates (2)
November 7, 2023
Stem Cell Transplant Day (Day 0) November 5, 2023 was the most happiest, emotional day I've had since before disabling symptoms started in the fall of 2017. Bear with me as this is my journey and feel it's important for me to get it written down as it's still so raw. Not just for me, but for others going through HSCT to fight their autoimmune disorders or considering HSCT in the future. There's been more tears than I was expecting, or prepared for. I let my past go in a way that has held me hostage for far too long. I needed some time to process before being able to put into words what this day truly means.
In a room with four other HSCT warriors that were strangers two weeks ago, now lifelong friends. We have developed a bond that's unique and amazing through this experience that makes us more like sisters. Having been through their own unique battles and life changing experiences that led them to HSCT... to be seeing them receive their new stem cells and watch their faces as the stem cells made their way back to them. To see a change in them at the same time it was happening to me. Hope. Possibility. New opportunity for a brighter future. We didn't need words to know what the others were feeling. The smiles on their faces said far more. The butterfly is a well known symbol in the MS community mainly because each is unique. Today, it was like coming out of a chrysalis and emerging into a bright new future. Very powerful and amazing experience! I wish the rest of my HSCT warrior family the best and can't wait to watch each group celebrate their new beginning!
Watching my billions of stem cells mobilized new from the bone marrow, with no memory of MS or other autoimmune conditions, return to begin the rebuilding of a new immune system that has held me hostage for most my life. The tears flow down my face through a huge smile, filled with hope...now. Not just for me, for the other 18 here this month that fought to get HSCT, and the ones that will fight to get HSCT in the future. My words will never be able to explain the feelings that truly occurred today.
I'm going to give some backstory. Thoughts rushed quickly of the things that I lost and had resolved to give up the rest of my life. Things that were taken away quickly as my immune system continued to attack my spinal cord sometimes overnight, sometimes in seconds. Even when the tests and specialists felt it wouldn't happen anymore, new lesions kept occurring causing me to worsen. To draw a picture of my spinal cord it would look like an extension cord that someone damaged with a weed wacker along the entire cord and tried fixing with electrical tape. I've taken the diagnosis and the disabling symptoms and mostly kept positive by focusing on the things I still could do that hadn't been taken away...yet. Being an optimistic person with a sense of humor about how my body was failing me is most likely why I didn't fall into a deep depression. It's what kept me from not curling up into a ball and staying like that.
Every single day since coming home from the hospital (January, 2018) has been started with making sure my feet are touching the floor. Needing to think about each step before trying to take it as the signals were not getting from the brain to the rest of my body. Not feeling where my feet were compared to the ground. Things that took seconds without thinking about them took minutes or just couldn't be done that day. When feeling came back to my hands after intense IV steroid treatment it felt like all the fingertips had second degree burns or worse if they touched anything, even silk. I adjusted and adapted while in constant burning pain not wanting my fingertips to touch anything. All because there was nerve damage somewhere in the spinal cord telling my fingertips to intensely burn constantly.
The worst days where the nervous system was going haywire I spent most of my time in bed. The more still I stayed, the less my nervous system sent painful or wrong signals. Two or three days a week usually, sometimes more, for almost six years! Please, never tell someone that it must be "nice" to get to lay around all day. One day of activity usually has been followed by 2-3 days of recovery. If I were a rechargeable battery, it would almost constantly indicate the battery was almost dead. I really had to plan for showers, dressing, hair and makeup (maybe) with rest time during. What took 30 minutes before, took 3 hours or wiped me out completely. I had my long hair cut short to reduce the time and energy it took to maintain. I'd get ready to leave the house but wouldn't have enough power to function anymore. Just getting ready would put me back into bed for 2-3 days. That's only if I started with enough energy to even try.
Being surrounded by my fur babies made the bad days tolerable as this is what my life was to be now, until it eventually gets worse. I would cross that bridge when it came. Each physical setback had me wondering if this is going to be the new damage that takes my arms, legs, or something else from the neck down and takes away my ability to live alone, or live at all. The nervous system is the communication from the brain to every single thing that makes us live and function. That includes the heart and lungs knowing to keep beating and breathing. Every day I woke thankful to be breathing, thankful that my arms and legs could move, not knowing what type of day it might be until I pulled myself out of bed (using a bed assist) and took a few steps using the wall and furniture for balance.
Physical therapy, occupational therapy, doctor appointments, blood labs, MRIs of the brain and spinal cord, CT scans, a PET scan to rule out spinal tumors, neurologists, rheumatologists, hematologists, specialist's at Mayo Clinic, ER visits, calling work from a hospital bed to say I don't know when I'll be back because my legs aren't working and I can't feel my hands, going from short term to long term disability for the first three years, continuing to worsen, filing for permanent disability and the weight of that word "disability" really sinking in. Insurance companies are a whole thing of it's own that consumes too much time and energy already to go into and I'm not trying to put you to sleep. Finances disappeared and my parents kept my head above water so I didn't lose my house. Constantly worrying about the next month and wondering how long before I didn't have any other choice but to sell the house. That thought was always only a month away while just fighting to walk. There was an avalanche of things that happened shortly after noticing numbness in my hand that I thought to be a repetitive motion injury from building military trucks on an assembly line.
Today was waves of emotion thinking of what I've really gone through prior to getting here to this day. Memories of how much of my life was affected by a faulty immune system well before 2018. It's been a lot to process and I only shared a very small summary of my past story. Mostly because today isn't really about turning the page and starting a new chapter. I'm starting a new book! My new immune system gives me a chance at a new life! Day 0 is also page 1 of a 2 part series! I don't know what the chapters are going to be, the damage is there to always deal with in some way or another, but I'm excited to have a better chance to be in control of what my future holds. That's what happened today and not just to me but my other HSCT friends. Hope! Possibility! Changing my future outcome!
I WILL dance again!.. and again, and again! ❤️
