After eight hours of staring blankly at a wall following my neuro consult and a good night’s sleep, I got to work on Google, researching everything I could find on haematopoietic stem cell transplantation (HSCT) for MS.
Hopefully this list provides others a shortcut to information and stories to read, watch or listen to.
I know there are patients who blindly trust their doctors, nod and smile, and hand over control of medical decisions — I am not that person. I feel more in control when I can read the academic papers as well as the stance from health organizations and nonprofits. I like to ask questions from a place of knowledge and understanding. I find it comforting to hear from locations that have socialized healthcare and different governing bodies to compare studies and standards of care so I actively seek out guidance and recommendation from other countries and global entities. It’s reassuring when the world agrees on medical advancement, not just the United States.
Watch and learn
I found Chris and his HSCT for MS vlog on YouTube straight away. I watched every episode (except the one where he receives the Hickman line) in quick succession. Not only is he a talented video editor and storyteller but the Future Chris commentary interjected along the way provides a superb glimpse into the experience as it happens as well as what he reflects on looking back. Chris received HSCT in the UK under the NHS (very different I’m sure, than what my experience will be at Cleveland Clinic in Ohio) but I found his story quite illuminating. I’m anxiously awaiting his next episode. Chris if you read this, thank you for sharing your story!
- You can read Chris’ story on several sites or watch the trailer for his vlog above and check out all episodes on his YouTube channel.
Tell it like it is
I’m a storyteller at heart. Understanding the medical terminology is a great first step, but I want to hear from the individuals themselves. After reading the statistics, it was important for me to learn about HSCT from as many people as possible to paint my picture as I decided if this treatment was something I would pursue. Enter Spotify and the podcasting world.
- The HSCT Warriors Podcast
- Breaking it Down – a Multiple Sclerosis Podcast
- Time Keeps on Ticking – MS Warrior & Mom Life Podcast
Over the last month, I’ve had the privilege of connecting with four separate individuals (in real life – not just online!) who underwent HSCT. I’m incredibly grateful for their bravery and willingness to answer my questions, both the profound and absurd. They connected with a stranger in the hopes of making my road easier.
My amazing MS physical therapist, Randy connected me to two patients, after receiving their ok. If you have MS, get yourself a MS PT and become life long friends – I guarantee it will change your life. Through that initial connection, I was introduced to another friend that had been in hospital the same time as another. Lastly my transplant nurse connected me to the fourth, Julie. Ask your care team if they can get you in touch with other patients who went through or are going through what you are. If talking helps you, don’t be shy!
From the get go Julie promised to share “the good, the bad and the ugly.” You can read Julie’s story on her Caring Bridge site. We spoke for 90 minutes and instantly bonded. My friend’s mom once told me that people enter your life for a reason, a season or forever. Well Julie, I know the reason you came to me. I’m sure you will be by my side for this upcoming season but let’s just go ahead and plan on forever, ok?
During our conversation we talked about side effects from chemo, the nurses and doctors at Cleveland Clinic, how to advocate for yourself and how important it is for your family to advocate for you as well (because you’re too busy/sick with side effects!). She shared her brush with death during HSCT bringing that possibility into sharp focus as well as where she is now (she’s doing great). To say her story is harrowing and that she is incredible, is the understatement of the century. Julie detailed physical, mental and emotional ups and downs outlining the joy and elation as well as the pain and fear.
Patience is NOT my virtue
In talking to Julie she stressed that time is relative and patience (with yourself and your healing body) is a must.
It’s been nine years since my diagnosis and three years of declining mobility. Not to mention the two years of isolation in a global pandemic that we all endured to some degree. How much pain, distress, discomfort and uncertainty is worth a future without MS? A lot. How amazing would it feel to celebrate your body rather than mourn it? I could cry because there are no words to convey this. Do I want to rush into this grueling treatment to emerge on the other side depleted and worn out? Where do I sign up?
I have a long road ahead of me. I’m told there are days when I won’t be able to get out of bed to brush my teeth and that sitting in a chair will be too much effort. Post transplant, healing is slow. I won’t want to eat and every MS symptom could flare. I will lose my hair. But it’s worth it, I truly believe it is.
I feel better when I talk
I’m sure my friends and family are laughing at that one, but it’s true. And MSers know – there is an indescribable feeling of connection and peace in talking to someone with your shared experience. Knowledge is power after all. You can tell another MSer that you’re having pins and needles or blurred vision… or maybe your right foot could flex yesterday and it can’t today… or maybe it’s just that you are so damn tired you had to lay down for 30 minutes to recover from the six minute shower you took. Whatever it is, they listen and they understand. They get it.
Questions I asked
- What was a MUST to bring with you to the hospital for the month-long stay? (Because it’s more fun to shop on Amazon then it is to think about chemo. I will share my packing list at a later date.)
- Who did you bring with you and what type of support did you need? Or want?
- What do you wish you had known?
- How did you handle the chemo? What were your side effects and how did you manage them?
- What was your care like in hospital?
- What did you wear? Any special clothing? (It’s important to think about chest catheters or PICC lines, bras, shirts, access and more.)
- What was life like after the hospital as you healed at home?
- What should my friends and family (carers) know as they take care of me post transplant?
- How are you now?
- How long did recovery take?
- How do you measure success?
- If you had it to do over again, would you?
Bottom line at the bottom (not up front)
Every single person went through hell and every single person would do it again. That’s a pretty phenomenal endorsement if you ask me.
Get in touch if you have a resource that should be added to this page, I would love to learn more!