Mary’s Story

Site created on August 2, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

We would appreciate no posts on Mary’s personal FB page. Her mother has some memory issues and we don’t want her reliving or seeing reports on FB that may confuse or upset her.

Feel free to leave any positive comments in this forum or direct message Mary.

Thank you for you positive thoughts and prayers during this journey.

Newest Update

Journal entry by Mary Han

TURBT done this afternoon to “scrape” newly grown amyloidosis from my ureter reimplantation in January.  

I was greeted by my dr (I ❤️her) at UVA who told me that she’s working with 2 other amyloid bladder/kidney patients and bc of my trip to Boston University (amyloidosis clinic) & the information I learned there about my case; one of her other patients is able to undergo radiation to prevent new growth.  So excited for that person!

I had a great team working on me today.  They looked at my kidney; good.  Looked at my ureter reimplantation from January; good!  Scraped the new amyloid growth.  Looks like I’ll be getting the low dose radiation in about a month so I don’t have to be scraped every quarter.  I’m a little concerned, but it’s better than removing my bladder like we initially thought after the January procedure.  Soooo thankful I made the trip to Boston in July!

The negative thing is that I have a catheter for the next 2 days.  It’s really not that big of a deal, but after having one for 3 weeks after my January procedure and I guess I have some ptsd bc I’m unusually sensitive to them.  Trying to see the silver lining that I’m able to have it removed before the weekend.  I’m on meds for the pain and taking it easy...

Thankful for so much right now...
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