Good morning. ☺️
Thank you for letting me know your diagnosis. Now I’m getting a clearer picture of what you’re experiencing. I didn’t know where you were on this blood disorder journey so that information helped me understand what you’re dealing with.

Wet noodle is definitely a term I can relate to! I do want to let you know, that if you go through with the transplant in hopes of gaining back energy and stamina, you will still have wet noodle days in the beginning. The benefits aren’t immediate. There’s a slow but progressive recovery which can take some months. But it does get better! Unlike what you’re facing now where you feel like you’re declining with no hope in sight. That’s an awful feeling.

I’m so sorry to hear about your chronic diarrhea. As if your other symptoms weren’t enough. Goodness, that takes a toll on your health and energy level too, especially when you’re not absorbing all the nutrients you need…plus the constant worry about making contingency plans. Has anything been diagnosed for you in that department?

In my experiences, every doctor I’ve met in my 4 years at Mayo has been very approachable and forthcoming with answers to questions and allowing me to be part of the decision making. So when you have your appt in August, have a list a questions ready for them. You’d like to know if there’s any clinical reason for you not to have this SCT sooner in hopes of getting your life back to normal.
That you’re getting weaker and feel your health is declining. You can state what you mentioned to me in an early reply; You’re under the assumption that having this procedure done when you’re younger and healthier would be more beneficial. And you can also ask what’s their logic and reasoning behind their decision to wait.

How often do you get bloodwork done at a local clinic?