Larry Barkdull

Today, I witnessed possibly the greatest act of faith I have ever seen. After dodging HIV, kidney failure, hepatitis C, cancer, seizures, West Nile Virus, seven failed attempts to receive a donated kidney, my son, Matt, was finally scheduled for a kidney transplant tomorrow. Then disappointment, our old friend, struck again. Only hours before the surgery, Matt was canceled out. His reaction humbled me. He cried out his allegiance to God, drowning out cries of despair. Once again, he would pick himself up, and make his way back to God, who had always saved him.

When I think back over the last three years, I wonder how anyone could have survived such an ordeal. In July 2006, Matt’s kidney failed. He only had one-mine. I had donated it to him in 1990 when both of his kidneys abruptly failed. He was only fifteen. Now he had carried around my kidney for 16 years, and it was getting old and sick. Matt had been nursing it along for the last year. The doctors had ordered several ultrasounds, and each time they had seen a couple of troubling spots, but the biopsies had come back negative. No cancer…or so we supposed.

To complicate things, Matt was born with severe hemophilia, a bleeding disorder that prevents his blood from coagulating. Because hemophiliacs hemorrhage into joints, and because blood acts like an acid on joints, causing arthritis, both of Matt’s ankles have been fused. Perhaps worse, over the years that he had received blood products to coagulate his blood, he had become infected with hepatitis C. When the doctors prescribed Interferon to clear the disease from his liver, they informed him that the Interferon could kill his kidney. Even then, they only gave him a 20 percent chance that the treatment would arrest the hepatitis.

Faced with two impossible choices, Matt chose a third alternative: Turn it over to God. That is the way he has always handled things. His faith would sustain him, but little did we know that he was about to enter the worst set of trials of his life. Matt calls it his crucible.

Remembering the First Kidney Transplant

Today is March 5, 2009. Tomorrow morning, my wife, Buffie, and I had planned to arise at 4:30 so that we could be at University Hospital in Salt Lake City for Matt’s kidney transplant. Our son-in-law, Ryan, was scheduled to be the donor. Ryan was the last of a long list of potential donors, who, over the past ten months, were cancelled out for one reason or another. Buffie and I would have been accompanied at the hospital by our daughter, Lindsay, who is Ryan’s wife, Kristin, who is Matt’s wife, and Ryan’s parents, Lee and Tani.

The last few days have filled me with emotional memories. When I donated a kidney to Matt in 1990, I thought I was pretty tough. Then when the day came to check into the hospital, I fell apart. I was scared. Tears came easily, and I was embarrassed. A few days ago, Ryan asked me some questions about the upcoming operation, and soon he had to stand up and leave the room. Lindsay asked me to stop explaining.

My donating a kidney totally changed my life. On one occasion I told Ryan that being a donor is an experience that I would not deny anyone, especially a man. Whereas a woman can give birth, the experience of giving life escapes a man. When his wife is giving birth, he might appreciate what is happening, but he cannot quite understand the miracle that his wife is experiencing.

To give of your body so that someone might live approximates the Atonement. Donating a body part is as though the testimony of the Atonement is being carved into your being. Suddenly, the Atonement is no longer theoretical. In a very real way, the Atonement is part of you. You gain an in-depth appreciation of the Savior that you might not achieve otherwise, not even through temple proxy work. You can never look at people the same way. The entire focus of your life changes. Being a donor defines your life. It is never forgotten by the family. It becomes part of the family’s heritage. The blessings seem to redound to other family members and everyone who is touched by the event.

Ryan is our latest hero. Our other children who also tried to be donors are heroes: Gavon, Rebecca, Katie and Justin. The friends who stepped forward are heroes, too. It is no more possible to express our gratitude to them for trying to save our son’s life than to express gratitude to the Savior for saving our eternal lives. All of them understand something about the Savior that they never knew before, and they are forever changed.

The Crucible

In the summer of 2006, Matt was in and out of the hospital repeatedly. He was experiencing kidney failure, but some of his symptoms were atypical. But because he was growing worse, the doctors determined to remove the failing kidney, which they usually don’t do. Perhaps the Interferon to clear the hepatitis from the liver was the culprit. Even after the kidney was removed, Matt’s symptoms persisted which was a mystery to the doctors.
Matt began dialysis. We hoped it would be a temporary fix until he could receive a transplant in a couple of months. Little did we know that he would spend the next 2 ½ years confined to a dialysis chair–four hours a day, three times a week. During those years he would forget what it felt like to feel well. Whereas a kidney will completely clean the entire blood supply every 1-2 minutes, dialysis cleans the blood supply with 30% efficiency every two days. The buildup of toxins leaves a dialysis patient constantly exhausted and often feeling sick.

If hepatitis, kidney failure and dialysis weren’t big enough bombshells, the next piece of news was. When the doctors removed the kidney from Matt’s body, they discovered that it was cancerous after all-renal cell carcinoma, a very deadly cancer. More tests would be required to see if the cancer had spread. If it had, it would most certainly kill him. The initial results were promising, but to make sure, Matt would have to remain on dialysis for at least two years, long enough to rule out any possibility that the cancer would return. If the doctors decided to immediately give Matt another kidney, his immune system would have to be suppressed so that he would not reject the kidney. If there was even a trace of cancer in his system, his suppressed immune system would not be able to fight back, and the cancer would quickly overwhelm him.

But there was more bad news to come. Matt’s health continued to spiral downward, and trips to the emergency room became a normal occurrence. Buffie and I shuddered every time the phone rang in the middle of the night. To allow Kristin to stay at home with their three little girls, I became the driver. Typically, we would end up at University Hospital, some 40 miles north of us, where Matt’s specialists were located.

By August, we were becoming more and more concerned for Matt’s life. Due to respiratory failure, which he would experience again, he was in Intensive Care on a ventilator in an induced coma. One day, after prayer and contemplation, Buffie came to me and said, “I think Matt has West Nile Virus.” She was so certain that she insisted that he press the doctors to begin testing. The doctors reacted with skepticism, but agreed to test. What could it hurt to check it out? They learned a lesson that I learned early in my marriage-Believe a mother’s feelings. Sure enough, Buffie had been right; the tests came back positive. The doctors discovered that Matt had been suffering with West Nile Virus for at least three months. That had been the cause of his illness, not kidney failure.

Suddenly, we realized that a strange miracle had occurred. If Matt hadn’t contracted West Nile Virus, which had caused the symptoms that prompted the doctors to remove Matt’s kidney in the first place, the cancerous kidney would still be in him. It is rare for doctors to remove a failing kidney. They would rather keep it in and avoid another surgery, especially in a hemophilia patient. If the kidney had remained, the cancer would have spread, hastened by the transplant, and before anyone could have diagnosed the cancer it would have been too late. Therefore, in a remarkable set of circumstances, God had preserved Matt’s life with the West Nile Virus!

I would like to report that Matt and Kristin sailed through these adversities without a hiccup in their faith. But that would not be true. Even Job and Joseph Smith suffered lapses when the crush of adversity became overwhelming. Matt reminds me that most of the book on 1 Nephi is about the journey and not about arriving. But each time they have been beaten down, they have somehow found a way to get back up, find their way back to God and try again. Despite what they are feeling inside, they exhibit faith in public, and that is why they continue to inspire people who are also carrying tremendous loads. It is okay to hurt; it is okay to lapse; it is just not okay to abandon God or accuse him.

Other Miracles

Matt is no stranger to miracles. When he was twelve, I was impressed that he needed a special priesthood blessing. We had been hearing about a strange new virus called HIV that might be infecting the blood pool from which the clotting factor for hemophiliacs was manufactured. In Matt’s blessing, he was promised protection and a long life. He needed that protection. Late one night, Buffie and I received an urgent call from the pharmaceutical company that the batch of medicine we had on hand was contaminated with HIV. We had given Matt an infusion from that batch only hours earlier.

A few years later, we came to more fully appreciate the power of that priesthood blessing. During the 1980s, some 95% of hemophiliac boys were infected with HIV and many died of AIDS. Buffie’s cousin was one of the casualties. Almost an entire generation of hemophiliac males was wiped out within a matter of years by their simply taking medicine. But Matt was spared. His case was so remarkable that the doctors asked for a blood sample for research. There was no question that Matt had been exposed to HIV multiple times, but he never tested positive for the antibody. The doctors couldn’t figure out why, but we knew. You can’t see a priesthood blessing under a microscope.

Matt was the recipient of another set of miracles in 1990, when he needed his first kidney transplant. During that time, Buffie and I were testing to see who could donate, when I was abruptly cancelled out. This troubled me because six months before Matt’s kidneys failed I had received a strange impression that I would someday donate a kidney. The reason for my being canceled out was because I had nearly died of nephritis when I was eleven. Nephritis is a complication of strep throat that attacks kidneys. The doctors told me that my kidneys were likely damaged and I couldn’t donate. I took my concern to the Lord, and felt an impression to go to my bishop, ask for a blessing, and my kidneys would be fine.

After the blessing, I begged the doctors to reconsider. When they finally consented, they discovered that my kidneys were perfect. I became the first nephritis patient to ever donate a kidney, and Matt was only the second hemophiliac to receive a kidney transplant. We were so rare that our case was written up in a medical journal.

Matt’s miracles would continue. Early in their marriage, Matt and Kristin discovered that they could not conceive children. On the fertility scale, Matt was almost non-existent. To complicate things, Kristin was suffering with endometriosis that eventually cost her one ovary and almost the second. To save the remaining damaged ovary, the surgeon scraped and wrapped it in gauze and hoped for the best. After the surgery, Kristin was given Lupron, a drug to arrest the endometriosis by sending her into temporary menopause.
The combination of the operation and the sudden cessation of hormones caused her to become sick and put on weight, cruelly mimicking pregnancy. Worse, she developed a large stomach obtrusion that the doctors feared was a tumor. Almost seven months into the treatment, the doctors ordered an ultrasound that the lump was not a tumor, but a baby! A previous priesthood blessing had guaranteed Matt and Kristin would have children. Once again, we experienced the unequalled power of the priesthood. But the miracles didn’t stop there. Now they have one adopted daughter and two natural daughters-from parents who were physically incapable of having children.

The Price of Blessings

Of course, all blessings come with a price. Matt was now dealing with hepatitis C, renal cell carcinoma, dialysis, and West Nile Virus, and of course his ongoing hemophilia. I remember the words of an early priesthood blessing, one of many that would follow. The language compared Matt’s ordeal to stepping into a fiery furnace, as did the three Hebrew youths. He was promised, as were they, that one day he would emerge from the furnace without even the smell of smoke on his clothes. Until then, the Lord would stand with him in the furnace and protect him. From that point forward, he has lived from prayer to prayer, fast to fast, and blessing to blessing. Nothing except the intervention of God could have seen him through.

Now the fun began. The West Nile Virus sapped Matt’s energy. He began to go downhill fast. During those months, he hadn’t the strength to climb a set of stairs to his bedroom. He would spend hours, sitting in his front room, staring out the window at people living their lives normally, and wondering what it would feel like to walk to the mailbox and retrieve the mail. Twice, Matt became so weak that he felt his spirit try to separate from his body. He would struggle to hang on, knowing that if he relaxed he would be gone. He experienced fainting spells. He labored to get enough oxygen in his lungs. Twice, he went into respiratory failure, and he was placed on a ventilator in an induced coma.

I lost count of how many times I rushed him to the emergency room. Once, I rushed to his home, only to find him losing consciousness. He looked at me hopelessly, and said, “I can’t hold on anymore.” We called the paramedics, who transported him to the hospital. On another occasion, he experienced several grand mal seizures and was spitting up blood. We called the paramedics again. My older son, Gavon, and I arrived at the hospital moments later only to see Matt thrashing about with another seizure. The seizures had been caused by West Nile Virus and out-of-control blood pressure that skyrocketed to stroke levels then plummeted to the point that he would lose consciousness. The doctors feared that his heart had been damaged by the onslaught.

One morning, after he had been released from the hospital, Buffie and I drove to Matt and Kristin’s house to watch the children while Kristin took Matt to the doctors in Salt Lake. When he opened the door, nothing could have prepared us for the shock of seeing him. Overnight, his hair had turned silvery gray and his skin had turned a dark bronze. He ended up being admitted. The doctors couldn’t explain by his hair had suddenly turned gray, but they guessed that it might have happened because of the intense trauma brought on by the seizures. The jaundiced skin was another guess-maybe the hepatitis in his liver or perhaps a temporarily blocked gall bladder or liver duct.

Finding a Donor

Over time, many of the severe symptoms of his conditions declined, and life settled into a routine. Dialysis on Monday, Wednesday and Friday; part-time work at LDS Family Services on Tuesday and Thursday. (Matt is a therapist there.) The weekends were reserved for Kristin and the girls. The fact that we had come this far was truly a miracle. The priesthood blessings were being fulfilled. The cancer had not spread and the hepatitis was gone. The West Nile Virus had become less troublesome. He was experiencing bouts of paralysis because his dialysis catheter was failing, causing his Ph and electrolyte levels to rollercoaster. But another surgery to replace the catheter resolved that problem. Overall, Matt was recovering-enough so, that the doctors cleared him to receive a transplant. He had remained cancer-free for two years, and that was the echelon to proceed with the transplant.

Why we thought finding a matching kidney would be a slam-dunk, I do not know. Nothing had ever come easily for Matt and Kristin. Divine intervention had always been required. Finding a kidney donor would be no different.

In the summer of 2008, we started with Gavon, our oldest. He was cancelled out abruptly by a condition that we never had supposed. That was when we first heard that Matt had antibodies to many common antigens in the blood. Basically, he was allergic to the makeup of most kidneys. Over the months, seven people tried and failed to become a donor. No matter what, we could not find a match.

Our son, Gavon, tried three separate times, and failed. Our daughter, Rebecca, tried and failed. Our son-in-law, Justin, tried and failed. Several friends, tried and failed. Then our daughter, Katie wanted to try, but she had just had a baby. The doctors insisted that she wait for three months. When she finally began to test, she emerged as a perfect match-like an identical twin. We were elated! Finally, we had a solution.

Katie sailed through the tests, and the doctors were ready to set a transplant date. By October, she only had one more test to go, and that was supposed to be a cinch. This test was just to help the doctors plan the surgery. Early that morning of the test, Matt was awakened by the transplant office and offered another kidney. A 15-year-old girl had passed away and her kidney was a good match. Matt thought about it for a few minutes then turned it down. After all, his sister was a perfect match, and she was taking the last test that morning. Buffie and I had gone to the temple that day. When we returned, we received a call from our sobbing daughter. She had failed the last test because the arteries emerging from both of her kidneys were only half an inch long–not nearly long enough to splice into Matt.

So just like that, Matt lost two kidneys in one day.

Why I Believe in God

That was a bad day. We were out of options. Matt responded with typical faith. He didn’t want just any kidney, he would say, he wanted the kidney. God had promised, and he would deliver. Matt saw his responsibility as enduring cheerfully in faith. We knew that he and Kristin were hurting. We saw the tears; we heard the anger. But we also watched them regroup and return to God, who had always sustained them. Both the intensity of their trials and their ultimate response to them left us shaking our heads.

After that, Matt began to write down his experiences in a journal with the hope of helping other people. For several months, while he sat in a dialysis chair, he would remember his trials and the Lord’s mercies. Then on Christmas day, he presented the journal to us. He called it “Why I Believe in God.”

I wonder if I would have that level of courage? I wonder if I could cry my allegiance to God over and over despite the setbacks and the disappointments?
Today, the transplant was canceled just hours before the surgery, and Matt and Kristin are being tried again. Today marks the third time they had come within an inch of liberty only to be thrust back into captivity. In a bizarre twist of fate, Matt’s chemistries changed within the last few weeks, leaving him incompatible with Ryan. No one knows why. It just happened. Maybe because the doctors gave him an immunization shot a month ago. Ryan and Lindsay can’t stop crying; neither can Kristin, Buffie and the rest of the family. Matt is too numb to cry. He just stands in his living room and stares at all the gifts from congratulating friends. Literally hundreds of people are invested in the outcome. We’ve spent hours calling people to undo the preparations: Relief Society dinners, babysitting schedules, transportation. It feels like waiting nine months for a baby, then coming home empty-handed because the child was stillborn. Now, with all hope dashed, Matt and Kristin have to find a way once again to dig down deep into that place of crucible where prophets were purified and polished and emerged as gold. And remarkably they did.
No Risk in Trusting God

Without hesitation, they still can bear testimony that there is no risk in trusting God. The Church of Jesus Christ of Latter-day Saints is more than a culture to them. It is power that they have drawn upon repeatedly for every eventuality in their lives. It binds together their marriage and their family with a seal that cannot be broken. It has healed and upheld them. It has drawn down heaven to earth and saved them. I have heard Matt bear his testimony in the words of Alma: “I have been supported under trials and troubles of every kind, yea, and in all manner of afflictions; yea, God has delivered me from prison, and from bonds, and from death; yea, and I do put my trust in him, and he will still deliver me” (Alma 36:27).

Today, we hurt. We are disappointed and exhausted. We do not understand how we can continually come within a breath of relief only to have it snatched from our hands. We cannot see a solution. And yet there is hope; there is always hope. If there is a God, there is hope. We recognize that our circumstance is the perfect formula for a miracle. Therefore, we will regroup around our faith as we always have, and return to the Source from which our blessings have always come. Despite the present difficulty, we are determined to stand firm in our faith and, like Matt and Kristin, cry out our allegiance to God, who has always saved us. We fully expect that there is a glorious ending to Matt’s journal, and it will sum up perfectly his thesis, “Why I Believe in God.”