Heidi and Brad Stokes
Heidi and Brad Stokes are alive and well, and that in itself is a miracle given all they’ve been through. Heidi and Brad are friends of mine, and I interviewed Heidi about their epic journey from death’s door back to health and happiness. Here, in Heidi’s own words, interspersed with actual journal entries from their CaringBridge journal, is their incredible, inspiring story.
THE SAGA OF HEIDI AND BRAD STOKES
by Heidi Stokes
When I was seventeen, I was diagnosed with lupus and told I wouldn’t make it past twenty-one. At twenty-six, my husband, Brad, was diagnosed with primary sclerosing cholangitis (PSC), a fatal and untreatable liver disease. Doctors said there was no hope for either of us.
Brad and I are now fifty-two years old, with a son, Christian, who has an auto-immune disease of his own, type 1 diabetes. People often can’t get past the illnesses to see how rich and beautiful our lives are. Not long ago, when we were all very sick and lying around in our PJs, Brad mentioned how comforting and wonderful it was just to be home with each other. Our bodies are completely dysfunctional but our family isn’t.
The three of us have defied death more times than I care to remember, but we’re still here, loving life and each other. There’s just something about staring into the maw of death that makes you appreciate the miracle of life. And when it comes to our health, we don’t just believe in miracles, we depend on them.
Brad had his first liver transplant at thirty-five, soon after transplantation for his condition had become viable. At forty-three, his blood work told us that the PSC was reasserting itself; but it’s a slow-progressing disease and we didn’t panic. Four years later, he had surgery for kidney cancer, but it wasn’t virulent and didn’t require chemo. Still, it was a painful, difficult surgery. He lost a lot of weight and muscle tone, and never got any of it back because his weakened liver couldn’t process food well enough to nourish him.
Brad’s decline picked up speed over the next three years, most of which he has no memory of. He was perpetually fatigued, couldn’t keep any food down, and exhibited signs of dementia because of excess ammonia in his brain. Worst of all was the merciless nonstop itching over his entire body. Brad told me that his fantasy was to get run over by a street sweeper; he didn’t want to cure the disease, he just wanted to be scratched! So Christian and I went to the mall and got him a little Lego street sweeper, which he kept on the table by the side of his bed.
As the months flew by, Brad grew weaker, and Christian and I felt powerless to help. Mentally, emotionally, and physically, Brad was beyond the reach of comfort. His only hope was a second liver transplant, but he had deteriorated so much—he was six feet tall and 116 pounds—that I doubted he had the strength to withstand another surgery, much less a demanding and painful recovery process.
By August of 2009, Brad was barely alive. I sensed it was the beginning of the end when he started hemorrhaging in the middle of the night, throwing up blood. PSC can smolder for years, but when it hits a tipping point you can be in big trouble very quickly. I helped Brad into the car and headed for Abbott Northwestern Hospital in downtown Minneapolis. But Brad being Brad, he refused to throw up in the bucket I had brought for him. Instead, I kept on having to pull over on the side of the road. There’s a fine line between preserving your dignity and “Get your butt in the car, we’re going!”
The efforts to control Brad’s internal bleeding have so far been unsuccessful. He has been given numerous units of blood in order to raise his hemoglobin and to all around make him feel better. The doctors are prepping him for surgery to finally stop the bleeding. This procedure is quite risky, but the doctors are confident.
Heidi’s CaringBridge journal entry, 8/08/09
Surgery the next morning stopped the bleeding, but rerouting the blood away from Brad’s liver put his kidneys in duress, raised the ammonia levels in his blood, and caused him to spike a fever. All his doctors advised against transporting him to the Mayo Clinic ninety minutes away, but I (more…)