Patient Story - Isabella Goldberg

Isabella is a beautiful young woman who was diagnosed with HLH and underwent a bone marrow transplant One year ago on September 13th.. This is her story.

THIS IS LONG, BUT BASICALLY IT'S MY
ONE YEAR POST-BONE MARROW TRANSPLANT. 

ONE year ago today, my donor's stem cells were transfused into me. Even though I had already been in the hospital for 2 weeks to prepare myself for this day, it has officially been one year ago since my bone marrow transplant. All the radiation had cleaned out the immune system I was born with, and I felt as though I was being bleached from the inside. 

I wasn't exactly in the best mood that day because I was extremely scared. My ANC (Absolute Neutrophil Count) was going to be 0, in other words, no immune system at all. I was almost 60 pounds more than I weigh today. You can see scarring on my body from how quick steroids made my body gain weight. I'm contemplating a hip replacement someday because the steroids and everything were just THAT EXTREME it destroyed part of my hip bones in order to save my life over time. I have my donor's blood type now.

This lasted till I was released a couple days before Halloween. And I can tell you, during that WHOLE TIME, I did not TURN ON the TV ONCE. When you're hospitalized for a BMT, you are in the highest form of isolation, and I had what looks like a really small apartment for medical use. I got out of the bed almost everyday, sat down at the table, and got crafty. I had stacks of coloring books, I drew, I painted, I molded clay. My parents were there everyday bonding with me doing these things. Some days I was so weak I would start falling asleep with a pencil in my hand, and I drew very slow. Every morning I read out of a devotional, and prayed to God. 

Anyways, it took until June to officially be out of isolation because my body took that slow to be decent enough to fight basic germs we come across everyday. I have faith I am going to do well from here although I still have immunodeficiency. Just think of me like a baby, I haven't been exposed to much.

This experience really showed me the TRUE COLORS of people...who were going to be there for me literally through death....who was going to love me unconditionally. 
I filled out papers to request to meet my donor too.

So today I'm going to be with friends, and, it is also...
THE ANNIVERSARY OF HAVING MY DOG SOPHIE!!! THIS DAY 2009 I GOT A PICTURE MAIL OF MY NEW PUPPY WHILE I WAS SEEING BLINK-182!!!
SHE'S BEEN AT MY BEDSIDE ALL THROUGHOUT MY SICKNESS I LOVE HER!!

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more on izzy

Visit Izzy's website her family set up for her when she was diagnosed with HLH. LINK