HSCT Part 3: Planning for Caregiving and Health Considerations
The next step after planning for treatment location and fundraising is, who will/can go with you? Questions that you need to ask yourself are: can this person handle the tough or nasty stuff (incontinence of both kinds, puking, collapsing, severe infection, IVs/needles, blood, etc.)? Can they stay with you for the duration? Are they good with handling stressful situations? Are they COVID vaxxed? Having someone who can’t handle this when you’re at the worst/sickest time of your life would be challenging.
The role of a caregiver during HSCT
I chose Clinica Ruiz’s option to hire their professional caregiver (for an extra fee). This person would live with me 24/7 and was trained on how to deal with someone going through this (tortuous) treatment. For instance, knowing the very early signs of infection, knowing when to call the doctors for immediate medical advice, and/or when to go to the hospital if a fever spikes in neutropenia.
Neutropenia is when a person has zero white blood cells post chemo treatments. In other words, no immunity whatsoever. It is a very serious and precarious time for picking up infections of any origin.1
Dietary and translation needs
The caregiver also shopped for our groceries and prepared food for us both. I was blessed that my caregiver was brilliant in all aspects. Thank goodness I didn’t need to worry about daily housekeeping as that was part of the base treatment cost. Aside from having special dietary needs, I thought it would be prudent having someone who could translate medical information since I don’t speak Spanish.
This turned out to be invaluable.
Consider who you want and where you'll be
Although I chose a caregiver, I have seen many other people also bring their spouses, friends, adult children, or a parent to accompany them, which has worked great. I know a lot of people cannot bear the thought of being apart from their loved ones for so long. Everyone is different.
If you are having the treatment at a hospital, will they allow visitors? Hospital life is hard as many pwMS (people with MS) already know. In my experience, it’s sterile, controlled, and the food is hideous. Once neutropenia hits during HSCT I have seen patients alone and in isolation, but a portion of the treatment is on an outpatient basis at a local residence/hotel. My only advice is, to ask what the plan is before you leave so you can plan how to cope with it.
The HSCT treatment is an article in itself, so I’ll leave that for later.
Who will help when you return home?
Once returning home, I had to consider what sort of help or financial assistance might be needed or available. This wasn’t an option for me, but I have heard others use their short term disability as an option to cover the treatment leave and recovery time upon return.
I appreciate that there is government paid assistance for home care in some countries, but there are issues and challenges with it at the same time. I have had good and bad experiences with it in the past. Luckily, I had a number of people offer to help, to drop off food, run errands, etc.
Healthcare planning for HSCT
A tough topic to bring up is, a number of people mentioned to me that HSCT can put a woman/non-binary person into menopause, no matter what their age. So, if you are someone considering HSCT and are of child-bearing age, I would recommend speaking to a medical specialist for advice/planning about this.
Before departing for the treatment, it’s imperative to have any and all health issues resolved, so allocate time for this. Things can take forever, so get in line ASAP!
Things such as, a clear PAP (if female/non-binary), dental work, no latent infections, vaccinations up-to-date (if needed), and any other personal health issues you might need to have under control before leaving.
There are a number of disease-modifying drugs that need to be stopped prior to HSCT, so that is something that needs to be addressed and planned for. Speak to your medical team about the timing of when to stop those medications (some are 3 months, others are 6 months, etc.).
The importance of flexibility
I cannot emphasize enough the excruciating and detailed planning that went into my overall treatment plan and funding, and then even with all that, things constantly changed last minute.
My recommendation is to be as flexible as possible, mentally.
When I started writing this article in January 2022, I already had all my flights to and from Mexico cancelled once, and a week prior to departure, my return trip was cancelled. I scrambled to sort it all out even though I had nothing left in the tank. Thank goodness I had booked flights with flex fares.
The emotional, physical, and financial cost for likely the toughest treatment of your life (certainly mine), and potentially crushing MS, was staggering. But this was my Hail Mary treatment and I had to give it my all.
If you’d like more insight on my experience with HSCT, I have detailed it on my blog.
Do you ever experience trouble emptying your bladder?
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