Read a story

Melanie Robinson

I found this website in December of 2004. I was released from the hospital in January of 2005, and I read all of the member stories as soon as I could. However, I didn't have the physical or mental energy to write mine until now. Before I start to tell my story I just wanted to tell everyone who is involved in this foundation and this website THANK YOU, and if someone with porphyria is reading this...don't be scared! you really can live with it!

I am 23 years old and have always been in perfect health, I am 5'2, 110lbs and I have never even had the flu or pneumonia! My ordeal started in October of 2004, I had just graduted from college with a four year degree in Biology, Nursing, and Theatre (dance). I was in my first semester of graduate school (Master's in Nursing), and I just started my new job as a registered nurse on an oncology unit.

I had a sinus infection for a couple of days and was too nauseated and stuffy to eat. I woke up one Saturday and felt like someone kicked me in the stomach. However, I thought I just had pre-menstrual cramps, so I ignored it. I dealt with this horrible abdominal pain for a week before I was sent home from work because I kept vomitting. I went to a doctor, and the nurse took a urine test for analysis. It was then that I realized how dark my urine was. She told me I was dehydrated, and the doctor told me I had a stomach virus. He said that I didn't need anything for the pain, because it would mask my symptoms and if they got worse, go to the ER.

I went to the ER a couple of days later, because I just hurt too much. I was told that I possibly had an STD, ruptured ovarian cysts, appendicitis, pancreatitis. After all of the tests, I was sent home after 20 hours in the ER. The doctor gave me vicodin and told me that I should feel better. They insisted that the final diagnosis was an STD even though they never took a vaginal swab, and even though I was on IV anitbiotics for the whole 20 hours. The pain didn't even dwindle except for after the first 1 or two hours after the morphine.

Two days later I was still crying in pain, and I went back to the ER and was admitted. The doctors found nothing. I had a colonscopy, NG tube inserted, foley catheter, exploratory laproscopic surgery, and after a week, I went sent home with a referral to a psychiatrist. I was told I was too stressed out, it was in my head, or maybe I was drug dependent. I was a straight A student and a stable individual, yet they all thought I was crazy.

I felt better for a month or two and then the pain came back. Once again they refused to admit me and gave me Vicodin, but I kept throwing up. After a couple of more visits and finally a refusal to go home, they admitted me to the hospital again. They sent a GYN in to look at me, and he said that I never had an STD,(which I knew already) and that maybe I should be tested for sickle cell anemia and something called Acute Intermittent Porphyria. He believed something was wrong with me. Finally, one doctor and one nurse believed me. This visit was a blurr because of the all the pain and the pain medications. The doctors came running into my room one night after I urinated for a day in a container to tell me that I had Acute Intermittent Porphyria. I was so happy at first because I had a diagnosis! However, they were unsure how to treat it and what all the side effects were, so I was sent home the next day and told to eat more sugar.

Five days later I woke up and felt tingling in my feet and hands, and I had periods where I couldn't speak. I thought I was having a seizure, but I was awake. I was afraid to call my doctor or the ER, because I knew they wouldn't believe me. Finally, a friend took me to to the ER because I couldn't talk to him. After laying in the bed for four hours without being able to talk and after having every doctor tell my friend that I was faking it or having a psychotic episode, my doctor rushed in and said that seizures were a symptom of AIP. I was finally believed and admitted for a month into the hospital.

I have gone through every emotional process because of this. I was depressed, angry, scared but finally grateful. This website helped me realize that everything happened for a reason. I know that my ordeal was hard, but I went through two months of it. The struggles of the people before me lessened my suffering. If it wasn't for this foundation and your attempts at increasing awareness, I probably would still be suffering in pain.

I am now a nurse, I am back at work, I am on the Anti-Atkins diet, as my friends and I call it. I never thought I would feel fine again, but I am leading a normal life. I have learned to take nothing for granted and to listen to my patients when they tell me their symptoms. My boyfriend and I were watching "House," a medical show on television, and one of the patients on the show ended up having AIP in the end. The next day in the hospital everyone was talking about it. I have worked with four people in my hospital whom they have tested for it since I was there. Hopefully, I have done my little part in increasing awareness!

Thank you again!!