Jennifer Long and AIP Journey

  • Aug 17, 2021

Jennifer Long

Type of Porphyria

Acute Intermittent Porphyria (AIP)

Jennifer Long

The year was 2002. My life was finally coming together. I was 25, single, and had a great job where I was loved and respected. I have worked since I was 14 years old and was finally able to purchase my first home. It was a little condo but it was all mine ! A few months later, I started having a lot of complications; severe pains in my abdomen that felt like it was on fire and that someone was stabbing me with a knife. My legs and back started hurting terribly, and I then began vomiting. Nothing stopped the pain and vomiting. The doctors ran tests and could not find anything.

My family doctor said she saw something on my appendix from one of the tests, so they hospitalized me immediately. They treated the pain, which helped. At that time, I began my period. Also, the doctors discovered that I had I needed emergency surgery to take my appendix out and to remove several cysts. After surgery, I was discharged. However, the same pain and vomiting began again, so my mother took me to the ER, where they ran tests but found nothing. They prescribed pain meds and something for the vomiting and released me. Interestingly, I started my period the next day. For the next three months everything calmed down.

I began planning a trip to California but about three days before I was to leave, the illness started up again. The pain was so bad that I took repeated hot baths for relief. The pain pills did little to help, so the pain worsened. The same hospital sent me home three times from the ER because they could not find anything wrong. The fourth time I went to the ER my father spoke up and said," Please help her. Something is very wrong." So the doctors admitted me and this time they took out my gall bladder. For the next few weeks there was no change until finally my Uncle Tommy said to have me tested for Porphyria. He had been diagnosed with Porphyria when he was young and was very for a year. He spent a great deal of time of time at Johns Hopkins hospital until his symptoms subsided. No one thought that I could be suffering from AIP. But after running the tests, the results were positive for AIP.

It was such a relief to finally know what was wrong with me. I felt like I was crazy and the nurses and doctors often treated me like I was a drug addict seeking pain meds. Once I was diagnosed the hospital assigned a hematologist to me, who handled my case for six months, but my condition became much worse. I was hospitalized repeatedly and was given the same regimen; sugar, pain and nausea meds and Panheamtin. I was so ill that I was giving up physically, mentally, and spiritually.

I wanted a second opinion from a porphyria expert since most doctors are not familiar with the disease. So I flew to see Dr. Bonkovsky, who has dedicated most of his life on the research of Porphyria. He confirmed that I have AIP. When I return home, the doctor caring for me lost interest in my repeated attacks and would let anyone care for me when I was admitted to the hospital. I felt like they all thought I was exaggerating the pain to get the pain medicine. Anyone who has ever experienced the severe pain from porphyria knows that a light dose of medication was not going to cut it. I cried and cried and no one was helping me. I decided when I was released from this hospital stay I would not ever go back to that hospital or that doctor.

Then I became very ill and I went to Johns Hopkins where I met with wonderful Dr. Martin. He was not experienced with the disease but he did want to learn about the disease. Again, I was in and out of the hospital repeatedly, so when I finally got some reprieve, I decided to go on a cruise with friends. We flew to California and stayed there for three days before we got on the ship. The first three days were great but then I got so sick I was screaming in pain. None of the pain medication helped so captain of the ship decided to have the coast guard get me. They took me to the closest hospital where for the next 48 hours I do not remember anything. This was one of the worst attacks I have ever had. I began to hallucinate. This can occur when a person is having a serious AIP attack but they did not understand, so they kicked me out and fortunately, my friends took me to another hospital. My dad flew out the very next day. I was treated very well. Till this day I still don't know what happened to me at the other hospital. My dad went there to get my records, and they indicated that I was having a AIP attack. They did not indicate why they made me leave the hospital. I was hospitalized for two weeks and endured several infections. Even when I was released, I was still very sick so my father had a hard time getting me home across the country. As soon as we arrived home to Maryland, I was admitted back into the hospital where I remained for another week.

I thought things were better until I woke up one morning and could not stand up. I had to slowly crawl to my phone and called 911. By the time I reached the hospital, I couldn't move anything from the waist down and began to hallucinate. Within 24 hours, I could not move from the neck down and could barely breathe. I was on a feeding tube and taking oxygen. This went on for weeks, so I was terrified. No matter who was in the room, I only wanted my mom, my dad, and Dr. Martin. I was at Hopkins for almost a month until I was moved for physical therapy. I was there for two months and then was at the nursing home where they would not put me on a bed pan or put the call bell within reach. You can imagine the problems I was enduring were horrible from lying in vomit, so when my parents arrived, they had me moved back to the hospital. All of the stress put me into and attack that had me paralyzed from the neck down for six months. Finally, I started slowly moving until by the grace of God, I had a normal life.

After a long time in a wheel chair, walker and brace I am able to walk again. I still have bit of a limp but at lest I can walk. Since the paralysis, I have only had 8-10 attacks, so things have improved. I continued to have symptoms, including liver problems and collapsing. But now I have been able to have fun with my friends and even dance. I really believe that it was prayers that helped me through all of this.