Panhypopituitarism. Say what?

I am a Panhypopituitarian (PHP). That means that my pituitary gland does not function at all. The pituitary gland is in the brain, and it controls all of the glands in the endocrine system. So basically, it’s in charge of all the hormones that the body makes, which is a lot. I’m talking about growth hormone, thyroid, cortisone, adrenaline, estrogen, progesterone, testosterone, vasopressin, and many, many others. There are just  a few ways of becoming PHP, and they grow fewer and fewer as medical science advances. The main two ways are a brain tumor or major head trauma. I’ve never met another PHP in my whole life, and it’s fairly unlikely that I’ll run across one.

When I was 5 years old, I stopped growing. My mom is very petite, so no one seemed to question why I was so small. When I was about 7, I started having excruciating migraines. I’ll never forget the intensity of that pain. I was only 7 years old, but I knew something was terribly wrong. I remember thinking, but not saying aloud, that I thought I was going to die. My mom documented each headache and presented her case to our pediatrician. She knew that what I was experiencing was not normal. The doctor began the testing process.

It was November of 1987 when the doctors found my tumor on a CAT scan. At that time, there were only four teams of surgeons in the United States who could perform the surgery I needed. Fortunately for us, one of those teams was located at Texas Children’s Hospital in Houston, our home. The surgery was scheduled for November 30 and was performed by the pediatric neurosurgeon Dr. John Laurent, who never saw me in person before the operation. To do what he needed to do, he said it was best to form no emotional attachment to the child.

The surgery was performed by removing the top of my skull and separating the lobes of my brain. Dr. Laurent used a laser to extract the tumor from the pituitary gland. The gland itself is the size of a pea, and my tumor was the size of a walnut. The entire pituitary gland had to be disconnected from my brain, rendering me PHP.

I had 2 major post-op side effects, other than my endocrine system no longer working. The worst one is that I lost my peripheral vision due to damage to the optic nerves. My brain swelled after surgery, and the swelling affected the optic nerves, which run just beneath the brain. Basically, if someone is standing right next to me, I can’t see them. I bump into things a lot. The second side effect is that I lost my sense of smell. No one offered any explanation for that one. I guess when you poke around in the brain, some stuff just happens.

Day in and day out for the past two decades, I take all of the endocrine hormones synthetically, some pills, one nasal spray, and one injection. I look pretty much like everyone else. When a medical emergency occurs, my body doesn’t handle it like it should, so I need special care. What constitutes an emergency for me is not what constitutes an emergency to most people. Something like a stomach virus can send me to the hospital, whereas most people would just need to lay around for a day.

The whole reason I started this blog is because I had babies! To be PHP and get pregnant is no small feat. It was the longest of long shots. I went through 3 rounds of infertility treatment, needing the right combo of all those female hormones to get my ovaries to ovulate. They only had to work once and boy did they ever. I got pregnant with twins! Our daughters were delivered about 8 weeks prematurely, but they were hale and hearty from the moment they were born.

I have great respect for the doctors who have cared for me and am thankful each day for their medical expertise. However, I am certain that the hand of God has protected me these years and has protected my daughters from the moment of their conception. I’ve sat in a hospital bed and listened to highly skilled endocrinologists laugh and shake their heads, saying none of this should have ever happened. I thank God for the life I live, the health I enjoy, and the daughters I cherish.

2 thoughts on “Panhypopituitarism. Say what?

  1. I came across your post quite by accident while studying for a Medical Terms exam for my OT program. Your post was very encouraging, a testament to the fragility and preciousness of life itself. I salute you for your perseverance, and I hope your kids know how fortunate they are to have you as their mom.

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