Still breathing, still beating
Devin Heilman Staff Writer | Hagadone News Network | UPDATED 8 years, 11 months AGO
COEUR d’ALENE — Three decades ago, Pam Disbrow had a stern conversation with God.
Her baby daughters were taking a nap. She was all alone with her thoughts after being diagnosed with primary pulmonary hypertension. The condition was stealing the strength in her chest and making her weak.
Feeling doomed, she knew she couldn't go down without a fight.
"I stood up out of my chair," Disbrow said, her voice steady and serious. "I looked at the ceiling, put my hand in a fist and I said to God, 'I'll be damned if you're going to take me away from my girls. You took my mother away from me. You're not going to take me from my girls."
She said she remembers reading the Bible in high school, putting it down and saying aloud, "Lord, I can't live this way. You have to do something drastic to me to get my attention."
Disbrow believes her call was answered when she was 28. The primary pulmonary hypertension threatened to cut her life short, just as it had her mom’s, who died before reaching her 40th birthday.
Disbrow's condition required a heart-lung transplant, a surgery so new only a handful had been conducted since the procedure's inception at Stanford University in the early '80s.
She said she thinks this was her sign from above.
"He got my attention," she said. "I thought, 'Aha!' He got my attention and I got sick. Be careful what you pray for because it could happen."
Disbrow's ailment, now termed "idiopathic pulmonary arterial hypertension," will lead to death if untreated. Some symptoms are labored breathing, extreme fatigue and falling blood pressure.
"There were times that it was hard to take care of the kids," said Disbrow, of Coeur d'Alene. "There were mornings I would wake up and think, ‘Don’t let me wake up; let me go in my sleep.'"
Disbrow's mother's family had weak lungs, and her mother developed the hypertension condition after giving birth to Disbrow and her twin sister. Disbrow began showing symptoms after giving birth to her children, who are 18 months apart. Her lungs never recovered from the pregnancies so she went to a specialist in Spokane.
"He didn't tell me I was dying, but he told me I had a very serious problem," she said. "He goes, ‘You have to start thinking about a transplant but we don’t do them here.’"
Knowing her lungs and heart would be replaced was a scary prospect for the young mom, but she was determined to have the procedure so she could live for her children. She found one of the original heart surgeons from Stanford at a clinic in Tucson and asserted that her surgery be performed by the one doctor she knew could do it. She was successful in receiving treatment from transplant pioneer Dr. Jack Copeland.
"You have to be really bad before you can have a transplant," Disbrow said. "I had to go downhill before I could get it. With my disease, you have two years (to live), and a lot of people don’t get them in two years and they’re gone."
Miraculously, within a few months of moving to Arizona to be near the clinic, Disbrow's perfect donor match came through. The moment of truth had arrived.
"I took my Bible and I said ‘OK Lord, I can’t fight you anymore,'" Disbrow said. "'Either you’re going to get me off that table or you’re not.'"
She got off that table, but not without complications. Disbrow went into cardiac arrest during the operation and frequently got sick after the transplant. Doctors said she'd be dead in two weeks.
"But then I'd turn a corner," said Disbrow, now 58. "I'd get so close to death's door and then I don't go through it."
At 30 years and a few months post-surgery, Disbrow is now most likely one of the longest-surviving transplant patients in the nation.
"Thirty years out from a heart or lung transplant is bordering on a record," said Dr. Ted Koutlas, a cardiac surgeon with Kootenai Health affiliate Northwest Heart and Lung Associates. "I think about 30 years is the record for the longest surviving heart transplant survivor. If you think about it, the first heart transplant was in '67, so there's not going to be many people living that long."
Surviving a heart-lung transplant for even one year is not guaranteed, even by today's standards. Koutlas said the present survival rate for one year is about 60-70 percent and drops to about 40 percent at the five-year mark.
"Here she is 30 years out," he said. "That's pretty incredible."
In those three decades, Koutlas said the procedure has advanced leaps and bounds, including how organs are obtained and protected and how the heart-lung machine has improved.
"The biggest thing that's changed in that period of time is the medical part of the immunosuppression and how we monitor patients," he said. "Nowadays she would probably get a bilateral lung transplant and not have the heart replaced."
He said this kind of patient longevity is the goal for every surgeon.
"If you're a transplant surgeon, that's what you hope to see in every one of your patients, but it's entirely difficult to know who's going to do that or not," he said. "Survival from that and to live that long is really pretty miraculous."
Disbrow's friend from church, Jeanne Helstrom, couldn't agree more.
"I believe that she is a miracle of God," Helstrom said. "I have gained so much from her. I feel in awe of her because she is such a survivor in everything she does. She's really been an inspiration to myself and other members of our Bible study. She's just incredible. I just love her. She's always smiling."
Disbrow stopped anticipating her final moments when she crossed the 15-year threshold. She has a strong faith and enjoys spending time with her now-adult daughters, their families and her pets.
It's as though the long scar along her sternum doesn't even exist.
"It's like I didn't have the transplant. I'm normal. I have a normal life," she said. "I've never been better."
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