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Jill K: Lupus with GAVE (Watermelon Stomach)

Isn't there any place I can find out more about this illness?

Pale Pink Dahlia for Jill K, by Sherrill Knaggs, ISN Artist A year ago I was diagnosed with severe iron-deficiency anemia. Many tests and doctors later, I was told I had lupus and gastric antral vascular ectasia (GAVE) disease. I have had four transfusions (eight units of packed red cells), a series of iron infusions, and five argon plasma coagulation (APC) procedures. I am scheduled to have another APC next week.

My hematologist and gastrointestinal specialists are very supportive, but I am so frustrated at how little any one seems to know about GAVE disease. Isn't there any place I can find out more about this illness?

Can this condition ever be cured? Will I be going for blood tests every two weeks forever? Does it get progressively worse? Will I ever get my energy back? Is there anything I can do—foods I should or should not eat, exercise or no exercise, rest or keep pushing myself—that can affect my prognosis? Are there any "watermelon stomach specialists" out there?

Please email me with your experiences, advice and suggestions. Thank you for caring.

~ Update 10-04-07 ~

I have now been diagnosed with Mixed Connective Tissue Disease (originally I was told I had Lupus.) My most troubling symptom is GAVE's disease. My stomach lining continues to bleed in spite of the fact that I have had 13 APC's (and scheduled to have the 14th in two weeks).

I am at the hematologist's office every couple of weeks. I have had so many ferratin infusions, I've lost count. I have developed a sensitivity to the iron infusions, so I have to be pre-medicated before each infusion and I can't drive for the rest of that day (because of the Benadryl) and I feel pretty punk for at least two or three days afterwards.

In spite of the fact that my GI doctor assures me that there is no pain associated with GAVE disease, I have frequent stomach pain, bloating, and other GI problems that I never had before developing GAVE.

I have recently developed the dry eyes and mouth associated with Sjogren's. I wonder what's next?

To Contact the Author

Jill K.
Email: [email protected]
Story edited 03-11-05
Story posted 03-11-05 SLE
Story update edited 10-04-07 JTD
Story update posted 10-12-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Lupus Stories
Mixed Connective Tissue Disease
Overlap Personal Stories
Sjogren's Syndrome
Sjogren's Stories
Watermelon Stomach (GAVE)

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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