After reading the many stories of these porphyria patients, I felt that I had to tell my own. My mother had her first attack 17 years ago, I was only 10, but remembered very well of the awful events that took place. The doctors would yell at her for showing up in the ER day after day begging for help. They would treat her as a drug seeker, however after months of pain, extreme weight loss, and extensive testing. It was gone?
She never went back, she never found out what was wrong with herself. She picked up and went on with her life. Becomming an RN in a respected hospital, and then nursing a home. Until Sept 03, when she woke up sick to her stomach. She called to tell me she thought something was very wrong with herself. I laughed and told her to stop being silly, after all it was just a little flu bug how could that be bad? She went right to her doctors office, and told them the same, she was perinoid about it.
Two weeks later she went back to the doctor's office, with what she called a fluttery heart...and extreme water retention. They sent her on her way, with a few medications including Celexa. Then I recieved a call she was taken to the hospital by EMS. She was flippin her lid!!! or so to say...she thought she had a heart attack? A 40 year old woman. I was thrown off by her reaction over the phone, she really believed she was going to die. She said she had this pain that hurt, and it was getting worse by the minute. The hospital ran tests to no avail. She begged me to come back home to Ohio to say my good byes. She would call and tell me of these awful dreams of people standing over her with knifes.
Then things changed. Her condition worsened. The main nurse on the hospital floor called and said they thought she had cancer so bad in her liver and that she may not make it to the end of the month. I never even packed. I just drove home and when I arrived, they said that they were wrong. There was nothing really wrong with her except Hepatitis C. Thus, I packed her up and took her home. We went shopping and out to lunch and dinner, rented movies, and after a few days, I went back to Florida only to receive another call from my brother saying that she was sick again and then was better.
This happened a few more times before she was diagnosed with AIP. Since my mother was a nurse, I became less worried when she said it was nothing that couldn't be fixed. I had to go back home to take care of her again. I couldn't figure out why they wouldn't fix her? I would beg and scream at doctors and nurses. She would cry in such pain. Her doctors operated on her to find out if they could help. I never took things into my own hands as I knew nothing of porphyria. I had 2 small children that needed me, so I had to leave her again. My brothers were there, and an aunt who was also a nurse. Her doctor said they were going to send her to Cleveland Clinic, or Ohio State, but she would get better for a few days, so the insurance company would not approve the flight.
She was given a home health care nurse, port lines, and pic lines that became infected, and she became septic in early March. They promised she was ok and sent her home for the last time. She went back 2 weeks later with breathing problems and septic. Next, I received a call from my baby brother and Doctor that she would not make it through the night. I took the next fight out!! How could this happen, What had I done! I should have stayed.
When I arrived, I was walked onto the 6th floor of the hospital by my grandfather who collapsed in such sorrow. I bent over to help him up, and he screamed at me to run to her. He said, "Your voice could save my baby girl" So I ran to the room where my family was. Mother was in a coma, and was hooked to many machines. I knew was the worst day in all of our lives. I pleaded with my mother to please hold onto to life just a little longer. She had me at 14, so I had the youngest mother. Most of my friends were older that she was. I was never supposed to lose her. Just as I asked for her to give me the answers, she coded again for the 24th time that day.
The Lord blessed me with 15 mins. I had to let her go. At the age of 41 she lost her battle with AIP. I now know everything I should have known about it then. I only wish every doctor would know about porphyria, like they know of cancer.
I don't know how she handled the amount of pain and the vomiting she had. She would discribe it as if someone was cutting her open and taking eveything out of her. And just like many years ago, her doctors told her she didn't hurt that bad and that she just wanted drugs. At times, the nurses in the ER would tell her to suck it up.
I now try to tell eveyone about porphyria. Few people have ever heard of it or know the symptoms or what it could do to your life if you have it. If you have porphyria, please take care of yourself and know you are loved.