One morning in 1990, I awoke to pain in my kidney area. I thought it strange, having never felt anything like this before.
Ouch… The pain became excruciating, and, at some point, I remember being transported to Victory Memorial Hospital in Waukegan, Illinois. On the way, I began to hyperventilate. Waiting for triage, I was doubled over in pain, a pain I would not wish on anyone.
“Sorry,” I was told. “We can't give you anything for the pain until we know what it is!”
I was put on a cold X-ray table where they performed a scan and determined that it was in fact a kidney stone. Once they saw the X-ray, they gave me a shot of Demerol. I remember what it was because they had to shoot it right into my butt since I didn't have an IV started yet.
After a few hours the pain subsided, and I was began to feel normal again. They kept me in the hospital overnight. The next morning, a Urologist tells me I had passed a kidney stone into my bladder. I was discharged, and after a few days, I passed the stone.
This kidney stone episode became more important about 7 years later when I had more episodes with stones. As they hit more and more often, it was time to look into why.
I had consultations with endocrinologists and surgeons and, after many tests, it was determined that I had hypercalcemia involving the parathyroid glands. After a Sestamibi scan, they focused in on two parathyroid glands. After some consultations, I was told a doctor at University of Chicago was the surgeon of choice.
In 1998, the surgeon removed two parathyroid glands, and I recovered well, but my calcium levels never really went down to normal like they should.
After a few years of kidney stones, Lithotripsy and, some abnormalities in the parathyroid gland levels, I went to see Dr. Cathcart in Spokane, Washington, where I lived. He asked if I had heard of Multiple Endocrine Neoplasia or MEN? I said, “No.” Dr. Cathcart knew more than I did, and, at that point, he had some idea of what was happening with me.
In January of 2009, I was having some pain in my left kidney, and I was brought to the ER. Typical kidney stone symptoms, I thought. The staff did a CT to confirm a kidney stone, but, during the test, they noticed a lesion on my pancreas. The doctor thought it would not amount to anything at first, but we all thought we should have tests done to rule out anything abnormal. I was scheduled for an MRI, but it was inconclusive. Since the MR could not determine what was affected, I was scheduled for an EUS or Endoscopic Ultrasound. From that, they found 6 PNETS or pancreatic neuroendocrine tumors scattered all over the pancreas.
After that test, I met with a surgeon in Spokane who performs pancreatic surgeries. The first words out of his mouth were, “You realize that you CAN live without a pancreas?" He recommended that the entire pancreas be removed along with any other organs that presented with the symptoms of PNETS.
Needless to say, all this was a bit daunting, especially as I thought of my entire life changing. I did some investigation into my options as this surgery was going to change my existence forever.
After a thorough search of the area’s best pancreatic surgeons, I settled on one of the best, in my opinion. Dr. Thomas Bhiel at Virginia Mason in Seattle removed my pancreas, gallbladder, spleen, duodenum and partial stomach on May 1, 2009. The surgery took 12-plus hours.
After the surgery, I was immediately Type 1 diabetic, so I learned how to give myself shots, check my blood sugar levels, and I had to take digestive enzymes due to the fact that I didn't have the normal functions of a pancreas anymore. After being in the hospital for 6 days, I was discharged and sent home to recover.
After 6 weeks of a tough and painful recovery, I was back to work. New diet, new foods, new habits... It was tough. After time, you get use to the new habits, and you get back to being you again.
A few years after the hardest thing I will have to deal with in my life, the parathyroid issue reappeared. I did not have any kidney stones, but I had Lithotripsy to make sure all existing stones seen on CT scans would be destroyed. This went fine, but I knew I would have to deal with my remaining parathyroid issues at some point.
After several consultations with various doctors and endocrinologists and repeated high calcium blood tests, I decided to meet with Dr. Julie Sosa at Duke University to discuss my options. We decided that the best option for me was to remove all remaining glands, transplant some tissue into my left forearm and cryogenically preserve some tissue for future use if required.
On October 31, 2013, I underwent my second parathyroid surgery. Surgery on Halloween in the year 13? What was I thinking? But, all went well. After 4 ½ hours of surgery, I had the remaining two parathyroid glands, many lymph nodes and the thymus removed. I was in the hospital for 4 days and have recovered well apart from a bought with Tetany.
This journey has been long but feels like it is finally coming to a point where I feel stable. My pituitary gland is normal, and I have that checked every few years. My diabetes is controlled the best I can, and my calcium levels and PTH are normalizing.
I just recently was genially confirmed as being MEN1, even though I have been clinically diagnosed for years. My motivation behind the genetic diagnosis is so that I can help others who may have the same mutations as I do. I also want to dedicate some of my time helping others in the early stages of this disorder so that I may give them comfort in knowing that MEN is not a death sentence but can bring some blessings. It keeps us humble, helps us realize we are not invincible and allows us to help those less fortunate than us by keeping us grounded. We become advocates for our own health.
Editor’s Note: Sadly, David passed away in 2016 from natural causes. He was on a waiting list to have his insulin pump programmed.