Thursday, February 28, 2008

Flarevoiant

I told her about my lupus. She is doing well, or was yesterday. I didn't have the heart to see her today because I started to flare and had to leave work early. I hate not being able to do what is expected of me, even when I know the expectations are ludicrous. She has to start a medicine on Sunday that will make her hair fall out. She wants to be a film maker. She makes funny spoofs of comercials that I haven't yet had time to watch. She is bright and mirthful. She and her mom were glad I'd shared with them. I was too; I think it made all of us feel better.

I got home that night and thought I saw my own malar rash. I went to bed early but woke up too early and stared at the ceiling for hours like I have been almost everynight lately. If I called my rheumatologist, he would say to go back up on the prednisone. I called a therapist instead. And I called off on work. I want to think that it's just sleep I need.

Tuesday, February 26, 2008

Isn't it lucky


I'm exhausted. I got a pass off patient today who probably has a new diagnosis of lupus. Just when I think I'm getting okay with having it myself, something like that happens and I remember again that I'm not okay with it.

She has lupus nephritis. Kidney disease. The most common cause of lupus-related death. My kidneys are fine for now. Blood supply to my brain, questionable. But kidneys, fine.
The rheumatologist I consult about her case goes over the lupus criteria with me on the phone, asking about arthritis (check), rashes (check), and all the lab work we would expect to be abnormal (check, check and check). I pretend with her those aren't checks for my diagnosis, but some obscure "other" between whom we can both put professional distance. I have a vivid imagination, but I can't pretend about those checks. Denial, at least, has passed.

I didn't tell the seventeen year old patient, or the attending about my disease. I almost cried when I walked into the patient's room. Gathered myself at the doorway. Kept it together while I was in there talking to her and her family and examining her joints, then almost cried on the way out. Good thing it was dark already when I got to noon conference late after talking to her before transport whisked her off to an eye exam to see if she had lupus retinitis which would herald cerebritis.

I'm tired.

I did have a good time with the hood last night, though. With a couple new additions. Bob's best friend forever, Adam, has moved into his studio with him and it was sort of an Adam welcome dinner. Jane and I had plans to go to sushi ourselves and avoid the scene. She was hiding out at a bar when she texted me on my way home from work to scheme, but then we both felt bad ditching the boys (the group isn't nearly as fun without us--or so we are led to believe). I was, as usual, tired and almost didn't go, but then Rick called after he finished surfing and met us there. Half price sushi with a group of friends is hard to beat.

Melissa, and now Rick I guess, are always surprised that I even know my neighbors, let alone hang out with them on a regular basis. Jane came running up to my place when she got home from the bar and found me passed out on my bed; she was escaping the boys who had invaded her apartment before she even had time to get home and pee. We giggled over a few shared girl jokes and she told me about her new super soft pillows before joining the male fray downstairs.

At dinner, having Rick there, I realized again how well I have grown to know these people who live on the other sides of my apartment walls. And how comforting I find it to come home to a place where they watch my lights to see when I come and go. And care when I come and go. Yet still let me wander in and out without expectations or restrictions. Just with an interest, and companionship or concern when needed.

When Libby visited, I also had that realization; seeing my life through the eyes of relative strangers, I realize the unity which surrounds me when I let it. The beauty of the place we live. The diversity of the people I know. The closeness of my family. The communities I join. The work I am able to do. The health I have regained. The lessons that journey continues to provide. The writing I can do. The books I read. The music friends have shared. The friends I care about, near and far. Realizing the help I can provide. The smell of the fresh cut grass when I climbed the outside stairway at the hospital in the 70 degree February sun. Two perfect "champagne" lumbar punctures in one call day. Patients recovering. Cautiously growing confidence in my knowledge and skills. Working on asking questions and forgiving myself and speaking "impeccably." Nurses greeting me with warm reality. Sunsets over the ocean. And soon, bed.

"Isn't it lucky."

Friday, February 22, 2008

Skeletons


The first things I did when I woke up this morning, waking after ten hours of glorious comatose-like sleep to the sound of the rain instead of my radio alarm, was think about work.

I can’t seem to leave it alone. Yesterday I had a seven week old patient come in who is still at his birth weight. Now it is normal to lose some weight after birth—in the first few days baby’s can lose up to 10% of their birth weight—but by 10 days of life they should be gaining about 33 grams, or one ounce per day. This child had gained exactly 1 ounce in seven weeks. He looks like a tiny skeleton. His cheeks are hollowed out and the muscles on his legs have none of the baby fat to hide them; they tense with every frantic movement. His mom is adamant that he only be fed breast milk, without calorie supplements, without pumping and giving him a bottle. She may not produce enough (judging by the size of him, no where close) since she had a breast reduction 20 years ago so she has recruited other women to give him their extra milk, which she tries to give him via a dropper held next to her own breast. During my interview of her, he frantically sucks at the breast the entire time, using what precious little calories he gets trying to find more food. She nurses him for one hour every two hours. Nursing is the equivalent to running a marathon for a baby. Their only jobs are eating and sleeping. He spends so much time energy and time trying to nurse that he has none left over to grow, barely enough to survive.

When I have finished talking to the single mother who’s ex (father of the baby) has left her for another woman, as she coos over her tiny skin and bones first child, I order nutrition consults, social work consults, lactation consults, failure to thrive consults, pre/post nursing weights, hemoccult stools, vitals, limited time spent on the breast, and more with the donated breast milk; and I call her pediatrician. We share our frustration over the failed interventions over the past seven weeks, perhaps a combination of the mother’s insistence on giving him only breast milk (which isn’t there) and her midwife writing her notes saying, “Baby is doing great today!” which the mother shows to me proudly. Instead of worrying about this baby for the past couple hours, his pediatrician, Dr. Whitney has worried about him for the past seven weeks when he has failed to show up for several appointments while continuing to lose weight, “Worrying about this child keeps me up at night. I don’t know what else to do.”

And so it is. I now wake up worrying about this child. On my one day off, I roll over in bed, reach over my pseudo bed companion (two pillows I line up next to me) and turn on my phone. My first call is to the nurse. She reports that the baby is sleeping next to mom. “Good,” I think, “better than wasting all his energy trying to nurse. He needs to sleep.” I make sure I have added the lactation consult. The next call is to the California Newborn Screening project to see if he has any underlying metabolic abnormality that might explain his skeletal-like appearance. In bed, I remember his date of birth, hospital of birth, how to spell his unusual first and last names. These details already ingrained in my memory. His newborn screen is normal. So we’re back to calories. More in, less out.

The opposite of what I tell my obese adolescents, who I worry about too. Like the 87 pound second-grader with a family history of diabetes. I see his future health problems, if he doesn’t lose the weight and change his habits now.

This is not a profession easily left at the office. One of my residents in medical school told me that being a doctor isn’t a profession, it is a life. Now I see the veracity of his statement. And so it is.

It’s no wonder I can’t focus on anything else well. I have flashes of loneliness curled up to my pillows late at night in the seconds before I pass out from exhaustion. I feel guilty about the things I cannot do—about the things I do not know. I read “The Four Agreements” in the few minutes I take to eat breakfast in the gray dawn and remind myself to “always do my best” and forgive myself when I feel that my best isn’t good enough. I listen toNPR to remind myself that life exists beyond my small corner of concern. I blast my “happy” iPod playlist while I workout, trying to drown out the noisy thoughts of the things I should have done, or should do, or should review. I read “Three Cups of Tea” and realize how blessed I am to have learned what I have learned and know what I know. I think of dates I’ve avoided or men I have don’t take time to know, telling myself I’m not worth it and don’t have energy anyway. It’s easier to hide behind work sometimes. Is it because it hurts less? It hurts differently, somewhat less personally. Emotions in, emotions out. My personal life is an emotional skeleton. I wake up worrying about tiny babies, wondering what else I can do. Trying to fix things that someone else has broken, because I want things to be perfect. Because I want to be perfect, and I know I can’t.

Friday, February 15, 2008

Open Heart

I am working back on wards at Children's Hospital. If I add it up I worked 96 hours in the past week. Or something like that. I'm too tired to really figure it out. I got home yesterday post call on Valentine's Day. I found a boxthat my mom had moved inside on my bed when she was over earlier dropping off the flowers book and pudding she got for me. My apartment is a disaster; all I do is stumble home and eat and sleep before waking up to "Morning Edition on NPR" at 5:30 am to go right back at it. The nurses asked me why I didn't wear read on Valentine's Day. It's cause I'd been there since 6 am the day before.

And my first admit was a 6 year old who was breathing 60 times per minute whenI walked in. He was almost not well. But we got him fixed up. He went home today. He had the flu and pneumonia. We abbreviate pneumonia "PNA"--the p-nah.

That along with bronchiolitis keeps us in business during the winter. I have the maximum amount of patients I can nearly everyday. If I don't by the beginning, then I do by the end, or some point in the middle since they come and go so frequently I have trouble keeping up with the dictations I'm supposed to do on addmission and discharge.

My last patient today was a five month old neurologically devastated baby. Her mother put her down for a nap a week ago and she had massive strokes; she will probably never wake up. I'm tired.

The present on my bed was from my dad. It was a silver open heart necklace. It took me a minute to figure out why he'd sent it. When I did, I cried a little. In some ways it's best that I don't have somone waiting at home for me when I spend 12-30 hours a "day" at work. In some ways it is best. In other ways--well the necklace and flowers and book don't care if I get home late. They don't care if I stop making my bed or don't have time to return the movie or pick up the dry cleaning. They don't care if I come or go. Sometimes it would be nice if someone cared. But if they did, I wonder if I could care as much for the strangers I help on those long days.

Sunday, February 03, 2008

Give and Take

“You never see a hearse pulling a u-haul,” Arvid said today in church, “You can’t take it with you.” His sermon focused on giving. No religion leaves acts of charity out of the accession to the divine—or accession to your highest and happiest self. Another of the ministers read a short essay by Isabel Allende whose 28 year old daughter fell into a coma and died after a year of silence. In her grief, Isabel realized anew the gift of sharing her stories and time and herself and found her daughters soft presence most with her when she gave. What do all of our gifts mean unless we give them away?

After church I visited the gym and read “Les Mes” on the stationary bike. As I near the end of the novel, Jean Valjean reminds me of giving also. A bishop gave him, a convict, the gifts of respect, freedom, recognition, and money which set his soul on a path of charity and growth. He passed these gifts onto those who needed his help on the cold streets of Paris.

I think of the 10 year old child we saw in pediatric cardiology clinic the other day. She emigrated here from the Philippines at the age of four. Born with a heart defect such that the two “great vessels” which take blood to her body and her lungs were switched, or transposed, she also a hole between the two sides of her heart that enabled her to survive, if barely. When she came to this country at the age of four, surgeons here repaired what they could of her heart, given the damage the inadequate circulation had already done. If she had been born here, they could have repaired her heart at birth, letting her live a long life with essentially a normal heart.

In clinic she looks thin and happy, shy and active. She swims for fun and enjoys her friends and school. I almost don’t want to know what her future holds, but once we have adjusted some medications for her pulmonary hypertension and left the room to dictate her visit, I ask Dr. Setzler what will happen to her, “She will get more and more tired and end up in a wheelchair by her late teens. She won’t have the breath or energy to get up and do much. Eventually, she will become home-bound, bed-bound essentially. On hospice. Unfortunately, that phase can last for 2-3 years sometimes, before she dies.”

I wonder if the active shy ten year old knows this about her future. They study the human body in her fifth grade class. Dr. Setzler asked her if she told them about her heart when they learned about the red and blue blood and the circulatory system. She only nods and smiles shyly and somewhat proudly. I wonder if she understands how her heart works. Even with the help of pictures I sometimes have trouble understanding all the shunts and patches and dilations and stents that redirect blue blood to the lungs and red blood to the body, or let them mix enough so that the tissues of the body can survive for a time. I wonder if she has trouble understanding how she has lived this long. And I wonder if she knows how she will die. I wonder if someone could have given her family money for a plane ticket when she was first born and saved her life.

Though most of the patients we see in clinic have repaired hearts or watched defects and live relatively normal lives, we see another patient that day, a four year old, whose life leans inevitably toward a premature end. Her mother speaks Korean and Spanish; my attending speaks English and Spanish. They get along reasonably well in Spanish, but the mother requests a Korean-English phone interpreter because she does not want to miss any of the discussion about her little girl. And she has questions for us—questions about giving.

On her last visit one month prior, my attending explains to me before we see the patient, her daughter looked very ill—end-stage heart disease and pulmonary hypertension, blue and exhausted all the time. He had added some medications but did not have much hope of them making a large difference. He had candidly explained this to her parents. I imagine an agonizing month for them, watching their little pink-bowed girl explore a world she would soon leave, loving her in the moments they had. At this visit, she has unexpectedly improved—not to change the course of her decline, but to slow it perhaps. Her mother, with tears in her eyes, still asks about organ donation. In Korea it has to be set up long ahead of time and she does not want to miss the opportunity to give away the healthy parts of her daughter so that others might live.

In the grief of this mother, and in the grief of Isabel Allende’s loss of her daughter and in the sometimes grief of simply surviving another day, salve for the wounds of living with loss comes in giving.

Jane has just brought me a bowl of homemade stew. On this blustery, drizzly, gray San Diego day, she brings me a gift of warmth and health and time. I try to think of what I can give. I think of the homeless veteran I remember from the Veteren’s day service at church. When the offering came to him, he contributed.

Arvid tells a story of Jesus and his disciples accepting rich offerings for God to the applause of the observers. In the midst of this, a woman in rags approaches and deposits the equivalent of a penny. Jesus tells his disciples that this represents everything she has and therefore more than the wealth of others in the eyes of God.

I try to think of what I can give. I can write. I can heal. I can listen. I can share. I spent a long time with an obese 10 year old and his family the other day. I approached the issue of his weight gently and told him about portion control and healthy snacks and no soda or juice. I tell him about exercise. I offer a few books in case the family (both mom and dad are busy working parents and heavy themselves) needs more structure to create diet plans. As I struggle with my own weight (prednisone induced, depression induced, winter induced, gene induced or some combination) I frame my counseling to him not as a criticism as much as an area where he can make changes to actively improve. The attending later told me that the family had thanked him for the time I spent with them. I can give that.

I gave my car to someone in Mexico I think—perhaps less than willingly, but it helps even to think of theft that way. Thinking of my stolen jewelry in Cincinnati that way, even in the midst of my grief over Michael, softened that pain a little, too.

Bob has just come by to visit on his way to pick up some food. He is short on cash at the moment with an empty fridge. I offer to share the left-over turkey from mom, or the stew from Jane, or the chicken soup from Loraine. As I rattle off the options, I realize how very much I have been given and remind myself of gracious gratitude. He refuses, but appreciates the offers, he says and heads out to get a Chipotle burrito. Given pride, accepting is much harder than giving.

For me, too. I find it very difficult to accept help, though easier perhaps than before my lupus diagnosis.

Yesterday in the NICU, after being up the majority of the night, and sleeping worriedly for the rest of my time on call there, I started to attempt an arterial blood gas collection on the newest and sickest of our babies. When I first heard of the mother arriving in labor with a premature baby (33 weeks, when term is 40) in our near future, I had the charge nurse page the attending, Emily, a resident who just graduated from our program last year and who my heparin drip and I visited in May when she worked in the NICU of the hospital where I spent my ten days as an inpatient. By the time I was attempting the ABG, she had arrived. Under the lights, I sought the tiny vessel in the tiny wrist without seeing the flash of blood which means success.

I saw flecks of light instead, then darkness at the edges of my vision. I asked her to take over the procedure and sat down where I could. The nausea and weakness came over me too suddenly to do anything else. I couldn’t focus and even sitting down I felt like I might collapse. I made it over the nurses’ station and managed to ask one of the nurses to bring me my water bottle. She took a closer look at me and noticed my pallour and diaphoresis (sweating) and got me juice and wet wash clothes instead. They only take care of babies so they didn’t know what to do with a sick big person. I told them I needed to put up my feet and it was probably orthostatic hypotension and that it had happened before. “But it hadn’t happened since before May,” I thought to myself. They didn’t know about my lupus or my strokes. Only Emily did.

When she finished with the baby, someone had gotten me a cot and she wheeled me over on one of the desk chairs. I felt too miserable to feel ridiculous. Lying down helped me after a while. Emily brought me juice and a cookie and asked me about why this happened. I wanted to chalk it up to sleep deprivation and nerves. I had taken my pills that morning, so my stress hormone level should be okay. I had inhaled oatmeal breakfast just before the call to the cesarean section for the premature breech baby boy so my blood sugar level should be okay. I didn’t want to think it had anything to do with the many clogged vessels in my brain.

When I told her my mom had moved to town, she looked relieved. I said she’d moved down here after I got sick in May. After my brother had said, “Shawna shouldn’t be down there alone!” I texted mom to come pick me up. She came in worried a half hour later, by which time I felt better, and whisked me off to home and bed where I slept for a petrified six hours.

I used to feel worse about asking for help, or even about recognizing when I need help. In April, I let my headaches go on for an entire month before telling anyone about them, by which point it may have nearly been too late. I ask more easily now (on some levels). I know when I need help (sometimes). I ask sometimes. Mom says she considers it a gift to be asked for help. She considers it a gift to be able to give to me.

I still struggle with pride, which tells me I should take care of myself. I practice asking for help and feeling graciously grateful for gifts given to me. In frustration at times I still crave complete and total independence. I don’t want to feel obligated to anyone or indebted to anyone. I give with fewer qualms than I take. Taking, I feel exposed. Giving leaves me free.

In a pensive mood the other day, I wrote, “I can bear this when I do not bare. Give me sorrow, grief, work, pain, illness. But ask me not to give you mine. I can bear yours only if I do not bare mine.”

I continue to remind myself to give generously of my talents and time and resources. And I must remind myself that taking enables others to give. And that pride offers no cot or cookies or wet washcloths before a fall. I must remind myself to ask for help, to learn from my teachers, to cry to my friends, to love with my family. I must remind myself to let the world in, so that I can share some of its secrets and wealth with you before whispering into your ear, “Pass it on.”