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Krissy: Systemic Scleroderma

Stem Cell Transplant Patient

Roses for Krissy Hi! My name is Krissy, and I live in Kent, Washington, where the weather is always pleasantly damp. About three years ago I was finally diagnosed with a devastating illness called systemic scleroderma.

I am twenty-three now, but ever since the eighth grade I have had strange ailments, causing me to believe at times that I was going nuts, because of the fact that no doctors understood what was happening to my body.

It wasn't until my hands starting turning blue and ulcers started appearing on the tips of my fingers that my primary care doctor finally sent me to a rheumatologist to see if I had Raynaud's, a very foreign word to me.

The rheumatologist took one look at my hands, and knew that I definitely had Raynaud's, but it also appeared that I was showing signs of CREST Syndrome. All this was becoming a great relief for me, and yet a little scary, especially when not even a month after my first initial visit it was becoming more, and more apparent that I had something called scleroderma.

I did not even know how to pronounce scleroderma, and no one else really seemed to know much about it either. When I was given the full rundown on what all scleroderma can do to your body, I went into shock. It was not until after the appointment, and we were at Applebee's that I really broke down and cried. When I say we I mean me, and my mom.

I could do a whole other story on my mother, and how strong she has been through all this, but let me just say this: without her I would not be able to make it! Since then I have had significant tightening all over my body. At first it was easy to cope with all of the effects, not only because of support, but I really was not that bad off for the first year.

Last fall I decided the winters here in Washington were a bit much, so I was lucky enough to move to a small town outside of Los Angeles called Covina, California, where I became a nanny for a single mom, and her five children, all of whom were school age. I was lucky in the fact that I loved the family, and the house was huge in comparison to the one I was raised in!

While in California, I worked with church youth groups and tried to take a couple of at-home college classes, and stayed strong in my faith that there is a purpose for me having this illness. By last May, I started having significant lung problems where I would wake up in the middle of the night not being able to catch my breath. I also started to notice that I could not play as hard with the kids, and some mornings they would have to practically roll me out of bed to do anything.

When my mom and aunt came to take me home for the summer, this last June, I was a mess. The smog in L.A. had really started to get to me and my weakness was ever increasing. As the months have gone on it seems this disease has tried to get me with all its might. Today I can't swallow anything, because my esophagus has shut down completely. My lungs have stayed pretty much the same, not wonderful, but could be a lot worse.

Our home is like a hospital. We have oxygen tanks for when I need extra help breathing, and a lovely kangaroo pump which is how I get my continuous feeding in me. My stomach has stopped functioning, but so far my small bowel seems to be doing its job.

I used to weigh one hundred and twenty pounds, now I weigh ninety-nine pounds and I keep losing! So I am in pretty sad shape you could say, especially when everyone around me is eating holiday treats! I am stuck with Chocolate Almond Delight (which I cannot even taste.)

I feel like I have significantly shared my gripes, and I hope that people reading this will realize that many with scleroderma will not have all these issues to deal with, but all of them are traumatic in their own ways. Lastly I would like to share my hope that I have not only in my belief that I will survive this, but that I have a chance to go through a stem cell transplant, a life-saving procedure in some patients, and in my case I am willing to take its risks.

Dr. Furst and the medical team at Fred Hutchinson cancer research center in Seattle are wonderful people and professionals. So I am waiting to hear this week hopefully when the process will begin.

I am definitely not a writer, and it took me a long time to just sit down and write this. My hope is that you can understand it and that someone maybe can feel that they are not alone out their in their battle. Since its Thanksgiving month, I would like to say, "Thank You" to my family members who've been taking turns babysitting me so that my mom can still work.

All the family I have at my church, especially the Junior and Senior High youth at Trinity County Church in Kent where I grew up, have been doing fundraisers for my stem cell transplant, and saying speeches in health classes about scleroderma to raise awareness.

I would also like to say thanks to all the doctors who've been seeing me weekly; it seems they have become like family! Lastly the Friendly Firemen in Kent—one of the highlights of this illness is that you get to meet firemen! Just Kidding!

Love to you all! Keep your spirits up and spread the word about this illness, which I am positive someday will be cured! :o)

~ Update 3/8/00 by Bunny (Krissy's Mom) ~

It has been a long slow process but Krissy finally got her transplant yesterday. She did well through the Radiation and Chemo — better then they thought. She's the first to have this proceedure with so many internal problems, so things are just a bit different with her. They were concerned about her feeding tube, but that is turning out to be a good thing because makes it easier to eat, even when she's not feeling well.

The biggest concern now is her esophogus problem. Because she can't swallow at all, there is a hugh amount of saliva that just pools in her throat. Anyway we're very hopeful that all will go well, and that she will get some mobility back in her esophogus, along with the other benefits.

~ Update 3/18/00 by Bunny (Krissy's Mom) ~

After several rough days Krissy is doing well. Her blood counts are on the rise since the immune system beginning to work. She's lost her hair. Looks pretty good!! Friends have brought her lots of hats.

I think she actually looks better than she has for several months. They tell us it will be quite a while before she knows if her esophagus will get any better, but at least things should not get worse. The doctors say she could go home Tuesday or Wednesday.

To Contact the Author(s)

Email: [email protected]

Bunny (Krissy's Mom)
Email: [email protected]

Story posted 11-15-99
Updates posted 3/8/00 and 3/18/00
Email note posted 8-18-03
New email posted 1-19-04

Story Artist: Shelley Ensz
Systemic Scleroderma
CREST Syndrome
Stem Cell Transplants
Jennifer Weldon: STC Survivor
You may send donations to:
Attn: Krissy Garthe Foundation
Keybank Center
505 W. Meeker
Kent, WA 98032
Go to Krista: Scleroderma in Overlap

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