Acute Intermittent Porphyria (AIP)
It's hard to believe it's been thirty years since my diagnosis. I thought life as I had known it was over. I had a loving husband, two wonderful children and nothing really bad had ever happened to me. I found out at the age of thirty that I was going to have another child. Everything went fairly well up until about five months into the pregnancy. I began to have abdominal pains. The pain would come and go. I would go into the hospital, stay a while, be diagnosed with false labor and given medication. In and out- In and out. The pain, however, became increasingly worse and was accompanied by nausea and vomiting. I also had a strange thing start happening. My urine turned tea colored.
Meanwhile, back into the hospital they were trying to discover what was wrong and gave me more medication, another consult with another doctor, and again the diagnosis of false labor.
My doctor decided to try an old remedy of using an alcohol I.V. to stop the false labor; I was now in a lot of distress and my moaning and groaning could be heard outside of my room. The other patients began asking what was wrong with that woman? Things then went from bad to worse, and I was sent by ambulance to the University Of Michigan Hospital in Ann Arbor. It was a frightening time in my life. It's very scary when you are so very ill, and the doctors can't find out why. My family and friends were praying so hard for me. My husband was such a comfort and rock when with me but told me later how he had sat out in the parking lot crying and praying when things seemed so dark.
God's timing is always perfect. It doesn't, however, mean that He answers as quickly as we would like. At the U of M Hospital they immediately took all medications away from me, including the pain meds. I now felt desperate. I begged them and my family to have them do surgery to see what was wrong. I knew if they would just go in and look, they would see the problem. The doctors had discussed a possible bowel problem but they really didn't know. As I say, God's timing was prefect and oh so merciful. In a few hours I was to have an exploratory laparoscope. At five months my baby would be at great risk.
How I remember the words from the two doctors standing by me as they looked down at my catheter. Those few words would change my life. "I don't like the color of the urine; The test is simple enough, do it;" The test came back positive for porphobilinogen and subsequent tests were positive for porphobilinogen. All surgery was now stopped and the diagnosis of Acute Intermittent Porphyria was given. My local doctor told me later, I was so close. I kept thinking, "What causes abdominal pain and red urine? " ; He couldn't remember, but you see, God knew the timing wasn't right. Perhaps we all had more to learn. As I was to find out later, Porphyria can be called the "little Imitator," as it can mimic so many other conditions...The doctors realized that the very meds that had been given to help me were in fact making my symptoms worse.
My life as I had known it thirty years ago was not over for me. The baby, even though he was born two months prematurely, is now six feet three inches tall, married and in full time Christian work. I have told him how God protected him in his mother’s womb. At times I tend to worry over him, as I do with all my children, but I like to remind myself that God loves him more than I ever could.
I cannot say that I have never been bothered with Porphyria again, but never for that long. I have had some episodes of severe nausea and vomiting especially after surgery or colonoscopies, and I did have a couple episodes two or three years ago that were suspect. The one started out with my head feeling whoozy, and I started to feel nauseous. I have migraine headaches, so I wasn't sure what was happening. I went to get up and walk and was so tired I sat right on the floor for awhile. I was able to get into the car but while getting to the doctor's office my legs and arms felt very strange and very weak. The only releif I could get was to hang my head as close to the car floor as I could get it. By the time I got to the doctor's office, I was so weak that the doctor described it as flacid. I was sent by ambulance from there to the ER. I received one IV glucose push in the doctor's office by the paramedic and one or two more at the hospital. I responded very well. Late that evening they started a 24 hour urine test.
For whatever reason the test did not show positive. This is still a puzzle to me. I had been taking a drug that my doctor felt that may have been the reason I got into trouble. She says she won't ever prescribe another similar one for me.
At age 61 looking back to the day of diagnosis, I realize I have done very well. When I feel good, which is most of the time, I feel so good that it is actually hard to imagine being sick.