Hundreds of Interlaced Fingers

by Vanessa Grubbs, M. D.

It wasn’t that long before Mrs. Durante was back in the hospital, sicker than ever. But all the other doctors behaved as I did and as we tend to do, as if the acute illness she was facing in the moment was temporary. As if her goals of seeing the grandchild five months away from being born or just going home again were still realistic.

  I think some of problem is that we—clinicians, patients, and families alike—get caught up in a person’s chronological age. We believe that eighty is the new sixty and that only death after at least a century on the planet is acceptable—even if the body has been aged before its time by hard living involving drugs or alcohol or by just plain bad luck of having blood vessels prone to clotting or cells prone to transforming into cancer.

  In the end, Mrs. Durante, the woman who wanted nothing to do with hospitals and nursing homes, died in a hospital bed after months upon months of hospital admissions and nursing home stays. She died in a flurry of tubes, compressions, electricity, IV medications—and dialysis. She died surrounded by the code team of doctors and nurses while her children paced and worried and prayed in the waiting room, not realizing that what was happening was not temporary in the way they hoped.

  “I don’t know what the hell happened,” Jo said when I called her a few days later to express my condolences. There was that familiar tinge of anger that families take on when they need to find fault. Someone to blame, because she never would have died, they believed, had it not been for those stupid, insensitive doctors. So what that she had been in the hospital more than not in the last year. She wasn’t supposed to die. Not yet.

  I had wondered how much Jo factored into her mother’s willingness to endure when all that really mattered was no longer possible. Jo’s entire life had revolved around her mother. Long before we got to this point, I tried to meet with Jo alone to try to help her come to terms with the reality of what her mother was going through, but something seemed to keep coming up to prevent her from coming by when she said she could.

  “I think she was dying,” I said softly. “And sometimes, no matter how hard we try, we can’t change that fact.”

  It could have gone the same with Mrs. Nisnisan. She was ninety years old when she died. The last time I saw her in pre-dialysis clinic, she was slumped in her wheelchair as if she had no bones. When I met her two years prior, her kidneys filtered about a teaspoon of her blood per minute. Now they filtered less than half of that and all the blood test results related to her kidney function were so far from normal, so ugly. Ugly numbers make doctors and nurses anxious. They make us want to do something to make them go away.

  We could have admitted her to the hospital. We would have been completely justified—the patient was dying of kidney failure. We could have placed a dialysis catheter in her chest and connected her to a dialysis machine until the numbers were pretty again.

  And if removing the wastes and extra fluid didn’t improve her breathing, we could have pushed a breathing tube down her throat and connected her to a breathing machine to do that for her too. We could have inserted an IV line or two to start the medicines to try to bring her blood pressure up to a more attractive level. At least 90.

  We could have even done chest compressions, not so hard as to break too many ribs, but hard enough to keep her heart pumping and just until we could get the noninvasive pacemaker pads in place. That way we could have sent enough electricity through her chest to try to make her heart beat a lovely sixty times a minute or so.

  That way we would be able to say words like everything and fighter, as in “We did everything” and “She was a fighter.”

  Instead, we did everything to help Mrs. Nisnisan not suffer. We stopped doing everything that could hurt her. For months we had been taking away medicines that weren’t helping her feel better. There would be no more sticking her for blood tests.

  She slept more and more of the days away until one day she stopped talking and eating in her awake moments. Then her breathing slowed and her breaths shallowed until she stopped breathing altogether. At home. Lying in her bed. Surrounded by all her children. Just how she wanted.

  19

  What Lies Ahead

  It’s easy to talk about courage and letting go and untethering from dialysis in the abstract. It gets much harder, bordering on impossible as we get closer, when it’s about you or the person you love. Even though I gave Robert a kidney to minimize his burden and maximize his survival, it’s still end-stage kidney disease. Transplants tend not to last forever. Reflecting back on an event that happened not quite six months after our wedding, I paused to ask myself What would I do to prevent death from happening if it were Robert?

  We were on the phone one evening, and I had just gotten Avery off to bed. Robert was in Boston, having just returned from visiting for the holidays. While our wedding was the first of Robert’s plans after transplant and years of being afraid to make plans, Boston was part of a close second on the list—getting back on the career path dialysis had forced him off. He had enrolled in graduate school at Harvard’s School of Public Health with the intention of getting a doctorate and left within weeks of our wedding.

  “I need to see the optometrist soon. My vision is really blurry,” he said. He paused. I could hear him gulping in the background. Ever since we got past the transplant surgery hospitalization, I loved watching him guzzle down whatever ice-cold drink he was craving. He paid so dearly for giving in to his cravings when he was on dialysis. Then there would be swollen legs and face and maybe even shortness of breath until he could get tethered to the dialysis machine to siphon the extra fluid away, but because so much was being removed so fast, cramping was sure to come. But after transplant, there would be no more swollen parts or shortness of breath in response to his guzzling. The urge to pee was soon coming to make everything all right again.

  I almost smiled at the thought until he came up for air and gasped, “Whew, I’m so thirsty!” and the pit of my stomach twisted with a new thought: Diabetes.

  New blurry vision. Excessive thirst. These were two of the major symptoms of newly starting diabetes. I knew Robert was already at risk because he was a bit overweight and his father had diabetes, but he had just had his transplant checkup during his visit home and all of his blood test results were fine. What neither of us knew was that one of his transplant medications placed him at further risk.

  “I think you need to go to the emergency room,” I said, worried.

  “What are they going to do for me there that I can’t do for myself here?” Robert asked. He had an aversion to asking for or even accepting help, but his attitude toward doctors had taken a turn for the worse since the days of Matty Kravitz, the nephrologist who could never remember having met him.

  “Uh . . . they could give you insulin,” I said. “It sounds like your blood sugar is high. There’s nothing you can do at home to make it come down.”

  And then he said something crazy on the order of “I was thinking about moving that sled into the living room.”

  Now I was afraid. “What did you say?”

  “When?”

  I felt a pang shoot through my core. I tried not to panic.

  “Robert, please. I need you to call 911. You’re not making sense now. I’m worried.”

  “OK, OK. I’ll go,” he gave in.

  We hung up and my mind went into overdrive. Should I go to Boston? Of course I should go to Boston. But what about Avery? I’ll take him with me. I have to buy plane tickets. What will I find when I get there? Oh, Lord Jesus, please let him be OK.

  I feared my wonderful, intelligent, but often stubborn to his own detriment husband had waited too long to go to the hospital. I envisioned standing with Avery a few feet behind the police with a battering ram breaking the door to his apartment down to find him comatose on the couch.

  My prayers were answered. Robert made it to the hospital conscious after driving himself to the emergency room. He drove through eyes that could barely distinguish how many fingers someone was holding up and with a quart
-size plastic bottle of red Kool-Aid on the passenger seat to drink along the way. He was so thirsty! How does the saying go? God looks out for babies and fools. It definitely applied here.

  By the time Avery and I arrived at the hospital, Robert was in a private room. He was pissed. Not only had he spent a full day in the ER on a gurney, but his nurse was late bringing him his antirejection medications even though they took—and lost—his pill box in the ER. And she wouldn’t give him any information. And a resident physician stuck him four times trying to get blood from the artery in his wrist. And his local nephrologist had yet to come to see him. It made him flash back to how he felt when Kobayashi never came to see him after performing the surgery that caused him so much pain. He felt abandoned. Unimportant. Again.

  But mostly Robert was angry because he had this new diagnosis of diabetes. It was another major thing to deal with, another example of his body failing him. And so soon after the transplant that was supposed to fix it all.

  Maybe it was just the stress and shock of it all that made him say the words that brought me to tears.

  “Man, if I lose this kidney, that’s it. I’m not doing dialysis again.”

  “What?!” I said.

  “I figure if the kidney fails, then the universe is trying to tell me something. I’m just not supposed to be here.”

  My words Let’s make a baby, and his response, I can’t do that, flashed through my brain. In my mind, transplant was still the panacea to make it all right then. To make it OK to go down the path of marriage and 2.5 babies and a house with a white picket fence and a minivan parked in the driveway.

  “Don’t say that,” I said, not knowing those were the exact words his mother had uttered two decades earlier as they walked into the pediatric nephrologist’s office to first learn his fate. Tears streamed down my face and Robert just looked at me with the usual Uh, water is coming out your eyes look on his face.

  I don’t remember what happened next. Robert says I stormed out in a huff, Avery in tow, and didn’t return until the next day. By the next day he was feeling better, he had his medications, and his nephrologist had come to see him. And I had chosen to push his words down into the recesses of my mind, pretending they had never been spoken.

  It was not until we were approaching our tenth transplant anniversary that I brought them up again. By then I was a nephrologist. One who preached about patient wishes and having the courage to let go and whatnot. One who had seen and heard and felt what happens when we refuse to let go.

  As we recounted the scene, tears began to stream down my cheeks just as they had before. I cried because I knew that even though it would hurt me, one day I might have to let him go. Untether.

  If that day comes, I will honor what Robert has said if he is unable to speak his wishes for himself. I will not push him to do what his spirit can no longer endure—because his words that day in Boston were from a position of real knowledge, from someone who had been through dialysis. For nearly six years. There was nothing abstract in his words.

  He is clear, so I will put his needs before mine. I will be selfless in a way that I couldn’t have been ten years ago in that Boston hospital room had things taken a turn for the worse. Selfless in a way that I wasn’t even with giving Robert my kidney because I clearly got something out of it. I got the likelihood of a longer and better future with him than dialysis could promise. I got to feel good about myself. I got to forgive myself a little for past mistakes.

  But I hope my resolve is never tested.

  I hope that the kidney I’ve given Robert will last another forty years and counting, just like the kidney given to The Other Robert Phillips. That in the end we die together in our sleep, hearts slowing to a stop at the same time.

  But if it doesn’t last until then, I hope that maybe a second transplant won’t be as hard to come by as I fear it will be. Like anyone who has had blood transfusions or a pregnancy, no doubt Robert has developed new antibodies that will attack anything foreign. But researchers are perfecting the process of desensitization in which they filter antibodies that might attack a new kidney out of a patient’s blood, making it easier to find a match for people with a lot of antibodies. Or maybe the surgically implantable artificial kidney that researchers at UCSF and Vanderbilt University have already been working on for more than a decade will be ready in time.

  Sometimes as I lie against him on the couch watching television, his left arm around me, I feel his fistula buzz, buzz, buzz and think maybe he would change his mind and restart dialysis if we found ourselves in a place where all our other hopes fell through. After all, he could have had a surgery to take the fistula down.

  But he hasn’t.

  He says he hasn’t because he doesn’t want to jinx the kidney. I say it is our backup plan. Our lifeline.

  Recently I came across a box of keepsakes with a love letter that Robert wrote to me in it (with a little help from Winston Churchill’s letter to his darling Clementine) from May 19, 2005, a little more than a month after our surgeries. It read:

  Vanessa,

  I know that neither one of us had in mind a year ago that we would meet someone and fall in love, but it has happened. And for that, I have no regrets. In fact, it is one of the best things that happened to me in years. For this, and what has happened to us and between us, I have you to thank.

  For the past year, you have brought so much joy to me that words can never explain. In the past year, you have brought so much life back into a lifeless body; I know and realize what it is to love and to feel loved.

  You have so enriched my life. I always feel so overwhelmingly in your debt, if there can be accounts in love. What it has been to me to live this time in your heart and companionship no phrases can convey.

  Much, much love,

  Robert

  As I read the words again, my eyes welled in the memory of that time, of our first year, and of all the years since then. But just as Clementine felt toward Winston, I feel it is Robert who enriches my life. I feel indebted to him. Through Robert I have been inspired. Inspired to love more deeply than I ever thought I could. To endure rigorous training I never thought I wanted. To write about things I never knew existed. Because he and I became us, I gained perspectives few can say they embody all at once—as doctor, as patient, as someone who loves a patient. Already we have been through so much together. Some of it has been hard, tearful, and unplanned, but most of it has been more than we knew to hope for and none of it do we regret, because all of it has brought us here together in this moment to experience what lies ahead.

  Acknowledgments

  So many thanks to the patients and families whose stories inspire me to write.

  Alita Anderson generously gave her time, energy, and advice to bringing this book to fruition though her own plate was already overflowing. She is a true friend and the most genuinely positive person I know, able to point out how what felt like a pile of crap to me was really the fertilizer I needed to grow a beautiful flower garden.

  Delphine Tuot and Elaine Ku were instrumental in helping to make sure my artistry was actually consistent with real nephrology. Lynn Mazur, social worker and my PCEP buddy, showed me a way to engage patients dealing with terminal illness that my medical doctor training did not provide. Melanie Tervalon, who now gladly takes credit for bringing Robert and me together, was a part of the small circle of people whom I trusted with earlier book versions.

  I’m thankful to Talmadge King for not only agreeing to be my writing protector, but also being nearly impossible to offend. I’m thankful to all the other family, friends, and colleagues who have been excited for me and have encouraged me throughout this process: Avery Burt, Janet Smith, Karla Jones, Jennifer Gunn, Mark Smith, Alice Chen, Bob Wachter, and everyone who has read my blog, particularly those who let me know what my writing has meant to them.

  Chris Freise welcomed me into his operating room and explained the details of kidney transplant surgery. Because of him I was able to write
about my and Robert’s surgeries in a way that my patient/primary care doctor–turned–nephrologist self would have not otherwise been able to do. Rachel Howard helped me refine my original book proposal. Victoria Sweet believed in my writing ability when I wasn’t so sure and introduced me to our agent, Mary Evans. Mary guided the book in a direction that I never intended but am now sure was the very best way to go. Tracy Sherrod, my editor, fought for this book, sometimes even with me. It took us a while to hear and trust each other, but getting there has led to what I believe is a better book than I could have written alone.

  Finally, I thank my husband and love of my life, Robert Phillips. He has been my rock and my greatest cheerleader. It was his encouragement that made me start writing to begin with. And without him there would be no book.

  Frequently Asked Questions

  I have pain on the side of my lower back. Is it because of my kidney?

  Unless you’ve been having pain when you pee for a while (suggesting a bladder infection that has spread up to a kidney) or have been seeing blood when you pee (possibly because of kidney stone), probably not. There are nerves and muscles back there too.

  How can I find out if I have a kidney problem?

  A simple blood test for creatinine (say “cre-at-uh-neen”) and urine test for protein or tiny amounts of blood only visible by microscope can detect a kidney problem early. High blood creatinine is a sign your kidneys have been damaged and aren’t filtering your blood fast enough. Blood or protein in your urine can mean the kidney filters have been damaged. Have these tests done every year.

  If you develop symptoms such as pain when you pee, blood in your pee, problems peeing, pee that bubbles up in the toilet like foam, or swollen legs, go get checked out even if you just had your annual checkup. Blood and pain when you pee could be caused by kidney stones or infection, but lots of other diseases can cause blood in your pee too. Problems peeing (like having to push to start peeing, dribbling after you thought you were finished peeing, or having to get up and pee two or more times overnight) suggest there is something blocking the urine flow, such as the prostate or a large mass. Urine that can’t pass backs up into the kidneys, causing pressure that can irreversibly kill kidney cells if left there too long. Foamy pee and swollen legs suggest there is lots of protein in the urine (though non-kidney-related diseases can cause swollen legs too).