Posts Tagged ‘liver transplant’

Brad and Heidi Stokes—Love, Lupus and Liver Transplants

February 5, 2013
Heidi and Brad Stokes

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…)

Brad Stokes’ Triumphant Return to Life

March 29, 2011

Heidi and Brad Stokes

I’m reading the CaringBridge journal of Heidi Stokes, a good friend of mine. The pain and suffering that Brad, her husband, endured while he was waiting for his second liver transplant is unfathomable to me. But he refused to give up and leave his family with nothing but memories of him. So he fought. And he suffered. And he won. It’s been close to two years since his transplant and he’s doing great.

Click here to read a magazine article about the inspiring Stokes family.

Click here to read an update I posted after Brad’s second liver transplant.

Here is an incredible and inspiring CaringBridge post Brad wrote on September 18, 2010. The fact that Brad is alive today is a testament to what Heidi wrote in an earlier post: “We don’t just believe in miracles, we depend on them!”

Just got back from three days at Mayo – my one year evaluation. Mostly good news: liver function – normal, blood pressure – 115/75, cholesterol (total) – 109, bone density – getting better (was osteoporotic, now osteopenic), hemoglobin – 11.9 (for years I hovered at 8.5 – 9.5), ECG – normal, ultrasound (all abdominal organs) – normal and unchanged, kidneys – …….kidneys?…….hello?…KIDNEYS?!… Well, they’re angry. They are mad about the anti-rejection drugs. They are protesting, but so far their actions are non-aggressive. A lot of grumbling (Creatine = 1.9, renal clearance=30), but so far, no dangerous uprising. Some liver transplant patients end up getting kidney transplants. I’m not there, but I can see the danger signs. We may reduce my anti-rejection drugs in 6 months, but obviously that carries the risk of liver rejection. It’s a delicate balance, but I’m not worried. There is much discussion and drug trials going on looking at alternate drugs and modified therapies to deal with this. I’ve been extremely fortunate that medical science has always been just slightly ahead of my need for it. When I was originally diagnosed with liver disease in the 80s, it was a fatal (more…)

Brad Stokes’ Third Chance at Life

September 17, 2009
brad-stokes-bathrobe

Brad Stokes—on the road to recovery!

As far as Brad Stokes is concerned, liver transplants are like potato chips—he can’t have just one. I wrote in an earlier post about Brad’s first liver transplant back in August 1994 as well as his courageous wife, Heidi, who has lupus, and their mature-beyond-his-years son, Christian, who has type 1 diabetes.

Brad’s liver disease returned with a vengeance a few years ago and, barely hanging on to life, Brad received a second liver transplant on August 14, 2009. Today, more than a month later, his recovery is going well and he is grateful to be back among the living.

You can read all about Brad’s amazing journey in his CaringBridge journal, which began on August 8, six days before his life-saving transplant.

Here is an August 30 excerpt from that jornal written by Heidi:

I am sitting on the floor in Brad’s room with a mask on—I might (more…)