Acute Intermittent Porphyria (AIP)
Hello, my name is Gabrielle.
My story begins in high school, which is a stressful time. I was a sophomore, I had a boyfriend and was enjoying my high school experience.
I remember the first time I was admitted to the hospital. It was a couple of days after my friend passed away. I remember seeing him in the hospital the night before they took him off life support. I came home and started vomiting, overwhelmed to say the least. A couple of nights later I was in a lot of pain, which was mostly in my back. I couldn't use the bathroom and when I did my urine was a very dark red color. I was in so much pain, it got to the point where I was taking hot showers every 20 minutes to ease the pain. Nothing seemed to help. I would wake up in the middle of the night confused as to why I was in so much pain. I would complain to my father, and quite frankly, he thought I was making excuses so that I wouldn't have to go to school. I wound up being taken to the emergency room at Jamaica Hospital. They couldn't figure out what was wrong with me. They did MRIs, CT scans and blood work. Nothing was conclusive. They misdiagnosed me with renal kidney wasting syndrome and sent me home with salt tablets that I was to take every hour or
so. I couldn't handle it because they made me vomit. To this day I can still remember that wretched taste. Naturally, those pills didn’t help. I wound up falling asleep in my parents’ room and having a seizure in my sleep.
Once again, I went back in Jamaica Hospital. My parents were tired of seeing me get an IV and then just get sent on my way. I truly thought I was going to die, ironically where my friend died right before I started having my attacks. My aunt suggested to my mother that she have me transferred to Long Island Jewish (which I believe is now called North Shore LIJ.) We were initially given a hard time about my transfer. The staff at Jamaica Hospital thought something could happen to me and refused to let me leave with my parents, so I had to be taken in an ambulance. When I arrived at the hospital, they took me to get a CT Scan. While that was happening, the workers searched my bags to see if I had brought any drugs with me, which I hadn't. They asked my parents if I had been smoking bath salts, which of course I wasn't. I spent a month in Long Island Jewish and every day I was getting my blood drawn because they had absolutely no idea what was wrong with me. They checked my heart, checked me for every disease possible. Eventually I was to the point that if I lost any more weight I was going to die.
The doctors decided to contact a doctor who specializes in Hematology. Only then is when they found out what I had. I didn’t care how long it took, I was happy to know. When they properly diagnosed me, it was huge for my family, but I was confused. I was diagnosed with ACUTE INTERMITTENT PORPHYRIA. I thought I had to live with the way I felt for the rest of my life.
It was terrible. I was so emotionally unbalanced. I would cry for absolutely no reason all the time. They finally sent me home from the hospital and I remember I couldn't even walk by myself. I was so frail. I literally couldn't even lift a soda can. I thought I was going to stay that way for ever. I had to have a nurse come to my home and hook me up to an IV. This was hard because I felt as if I was still stuck in the hospital.
I was an outpatient at LIJ at this point and I got to meet Dr. Wolfe, an oncologist. I consider him and the rest of the staff at LIJ to be my angels. They took such amazing care of me all the way through and were so amazing and nice the entire time. Dr. Wolfe explained everything to me and that's when things started to get better. I did have attacks afterwards, but I went straight to the hospital and they gave me heme which was made in a lab through an IV and they gave me IV fluids also. I had to go every day for about a week and spend all day in the hospital. To this day, I thank God I have not gotten sick, and I can gladly say I went on to have a family. I have a 10-month-old daughter, and trust me, I will make sure I go to get her tested so that I can be ready just in case history decides to try to repeat itself. I truly am grateful I didn’t die in my sleep or the hospital.
There were many times I just wanted to give up, but I didn’t. My family was there for me every single step of the way and they motivated me to stay strong. Without my parents, I don’t think I would've had the strength to stay alive. To this day I have yet to have another attack. Thank you for reading my story.