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I was diagnosed with a dieulafoy's lesion in 2004. It took the Dr. 12 days to find the leak. Eating solid food would agitate it and cause bleeding. I only ate broth and on the 12th day after being cleaned out for different tests I had solid food and I could feel the warm blood leaking. I got 12 units of blood in 12 days altogether. I was brought to bigger hospital and gastro Dr. coterized the lesion with a gold probe by going down the throat. The Dr. said this lesion was only the second one he saw in 30 years that's why it was so hard to find. When I was admitted my hemoglobin was 4.5 after I had passed out backwards on the bathroom floor at home. This is very serious, do to that event I have a spinal cord injury at c5 c6 and a paralyzed left diaphragm.
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@yooper1949 I am so sorry to hear of your experience. You are the only person that has reached out who has had this condition. It is my daughter who suffered. She lives in rural Northern California and had to be airlifted to SF. She was in the hospital for 10 days. After several endoscopies and other tests, they placed 2 “endoclips” and so far they seem to be holding. The medical professionals did not give her any information about restricting her diet, but she is anyway. She is anemic from all the blood loss and will need iron infusions. Her primary is following her closely at this time.
@yooper1949 since your experience in 2004, was there ever a recurrence of the Dieulafoy’s lesion?
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@yooper1949 - are you undergoing any follow-up treatment for your Dieulafoy's lesion?
@swampkid - how are things going with your daughter?
I also really wanted you all to meet @jlharsh.