PE

No, not gym class. Pulmonary emboli. Clots in the lungs that prevent the oxygenation of blood. Really bad stuff I learned about in nursing school but didn't think would happen to me. Then again, why would I think that I *wouldn't* get them?

The week started out well, but in true Kara fashion, here I sit in the hospital at UCSF as a patient--not a nurse, looking through the fog at Golden Gate park, waiting to get permission to get off the cardiac monitor to take a shower. Yep, I need permission to bathe.

I went back to work Monday. I had a fantastic shift with my preceptor from my nursing-school internship. We had a great delivery, with a cute 9.1lb healthy baby boy. The poor mom ended up with a third-degree tear, which means that she ripped almost through to her rectum from her vagina. Ouch! Of course the delivery happened at change of MD/CNM shift, of course it was with a midwife who didn't feel confident to repair a third-degree tear, of course the mom was Hep B+. The baby had to have an immediate bath so that he wouldn't get his mom's blood into any of the injection sites from his initial medications or the blood glucose check (because he weighed over 4000g). I needed 10 arms because by the time the MD started doing her repair, I was already engaged in baby care. The MD called for a gram of an antibiotic to be given IV while I was trying to check the baby's vitals, she didn't think I heard her call, but I did and quoted it right back to her. :-) There are so many tasks to juggle and prioritize; delivery is probably the most stressful time, especially if there is any spanner in the works.

Despite the deluge, however, my beloved coworker and I managed to get mom and baby transferred to postpartum in just over the regular allotted time for recovery. This was great because 1. the patient had an extended repair, allowing for extra time anyway and 2. I remembered how to do my job!

Triage that first night back was filled with patients with severe psych issues as well as pregnancies; I was very relieved to have had a fairly straightforward delivery and not have had to admit a patient who sadly didn't know her own name--and not from substance abuse.

The second shift I took an admission and spent the evening with a lovely couple having their first baby. The census was low, so I didn't get a second patient--which I normally would, and if I had a second admission to do, I would not have been so calm and collected.

I was enjoying the groove and was all set to do another day of training on Wednesday with a senior RN whom I adore. She is intelligent, fabulous, and very laid back. But at noon I started to ache and get the chills. I took my temp, and it was 102.5. I was not fit to be around tender youth, and I abashedly called in sick. Really? Sick on day three?

Thursday I woke up and felt completely drained. I had slept poorly, and still had a fever of 101 as well as shortness of breath. I drove Callum to school, sloped home, and called my MD's office for an appointment. She has told me in the past that because I have no spleen, a fever has to be watched more carefully and I should arrange to see her. I couldn't make it into SF for any of her morning appointments, but was set to see on of the NPs in the office in the early afternoon. I took Finn (my lurcher baby) to daycare because there was no way I could exercise him properly, nor did I know when I would get back from the city. A triage RN from my MD's office called to check in, and she asked if I'd listened to my chest myself. I told her that I thought I detected diminished breath sounds in my right lung, so she asked if I could come in early for a chest x-ray to rule out pneumonia. I said I would, but promptly fell asleep on the couch and didn't awake until just before time to leave for my appointment. As icing on the cake, I forgot I had set my glasses on the floor and stepped on them, breaking the frames. Argh.

So I schlepped to the city, dragged my sorry ass to the office, and collapsed on the exam table. My heart rate was elevated, and I had a low-grade temp. The NP listened to my chest and said that she heard slightly diminished sounds on the right and sent me off for the x-ray. I walked slowly across the street, got the x-ray, and went back to the MD's office to await the results. About half an hour later, the NP told me that the x-ray was negative for pneumonia, but that the attending MD and radiologist thought with my history of clots that I should get a spiral CT scan to rule out pulmonary emboli.

By this time, I was EXTREMELY short of breath, had pain on inspiration, and just wanted to go home to bed. I reminded the NP that she'd told me I could have the CT done the next day. I felt myself pluning down the well of anxiety: I had brought no pain meds with me, I was at the end of my strength, and I had to drive across town in RUSH HOUR to the other UCSF campus for a CT? Now? But she was insistent that the MDs thought it best, and wrote me a note for work saying that I had the flu. She gave me a prescription for pain meds (how in the hell was I supposed to fill this in the next 40 minutes and get the CT, I don't know) and a broad-spectrum antibiotic. I was pissed and felt really angry at this woman--not entirely without reason, it turned out.

I found my way to the other campus and had to park the car in a huge underground lot and climb four steep flights of stairs to get to Radiology. Anyone who knows me IRL can attest that I am an active person. Climbing four flights of stairs is usually not a big deal. And yet I felt with each step I couldn't breathe and wanted to die. Flu, my ass. Chest pain is not the flu.

Got the CT, limped back to the car, and joined the thousands of other people trying to cross the Bay Bridge at 5 o'clock in the evening. Right before I drove past the last exit into the city, the on-duty primary care MD called. She told me that the CT indicated that I had both pneumonia and two clots (those pesky pulmonary emboli) in my right lung, and that I was to turn around and come right back to the ED. Keep in mind that I was partially delirious, not well oxygenated, and very tired. I asked if I could go home first to get some things--I was also worried because my phone was running out of battery. She said that no, my driving in the first place was not such a good idea and that I needed urgent medical care.

So turn around I did, and found myself fast-tracked into the ED. It helps to have problems related to airway, breathing, and circulation. I was admitted, started on antibiotics, and trains of people started to see me. UCSF is a teaching hospital, which is great, and also annoying when you tell the same story to 20 people all in a row. All day. All night. Plus my case is "interesting." You don't want to be "interesting" in a teaching hospital, but that's another story.

The house was full, so I lay on my ED gurney for 19 hours before being moved to my med-surg unit. Now I have a delightful 80-year-old roommate whose health problems eclipse the hell out of mine, but it also sucks to be with someone whose lungs make possibly some of the most revolting sounds I have ever heard lungs make, and who is incontinent. Every hour or two there's a team in here, cleaning up her and her bed. Not to minimize her problems, but it makes it hard to rest when lights are always on and people talking and clanking loudly and flushing the toilet by my bed.

I am on obligatory, continuous cardiac and pulse oxygen monitoring and cannot do much other than go to the bathroom by myself without a physician's order. And I am still sitting here, an hour later, waiting for permission to shower. Great.

My pneumonia appears to be resolving with the huge amounts of antibiotics that have been thrown at it, and I am now on increased dose of anticoagulant, to be administered twice a day. That makes TWO painful injections a day. The boys will be thrilled because I let them help me give myself the shots. Twice a day means that they each get to stab me once. No more punching each other over injection territory, I hope.

So I am happy that I didn't get a clot in my brain, that the clots weren't larger, and that I am not so bad that I am in the ICU.

I am unhappy that the NP diagnosed me with flu (!) and would have sent me home. And that the MD was freaked out by my driving anywhere, but the NP was having me tear across the city and tax myself. Looking back, I think hope that if it had been my patient with shortness of breath, I would have encouraged taking the shuttle, and telling her to wait for the results.

It gets me so mad to think about the flu diagnosis that I must not think about it.

In other news, no less painful or unpleasant than a PE, I finally spoke with my brother A about his plans for visiting me. He had cancelled in December, citing the reasonable excuse of pneumonia, but then after saying he would come in January or February, I had heard nothing more. I get so tired of doing all the work, and I'd decided to tell him that if he was saying he'd come only to please me, not to bother.

I called him with the courage assistance of IV morphine last night to check in after we'd played phone tag for a few days. He was polite and concerned about the PE, and we had a decent superficial conversation until I brought up the visit--except I didn't like to hear that he's not telling his son that the Christmas and birthday presents are from us. Yes! Let's poison yet another generation with lies. But I digress.

Our conversation got back to how busy he is. I told him that I'd been doing a lot of thinking about how one-sided our relationship is, that yes we were raised in different families but we need to be respectful of one another, and that I don't want him saying things to make me happy and then reneging. I would rather have no relationship than one that makes me feel constantly on edge and rejected. He said that he would come the last weekend in February. I asked if he wanted to come. He said he would come. I said that he wasn't answering my question. Sigh.

We will see. I will believe he's coming when I go to the airport to pick him up and he's actually THERE.

Why does being adopted mean that these relationships are often such a freaking mess, and that it's so hard to trust? Ah, that legacy of abandonment.

Then to add joy to this already surreal past few days, the hordes of medical students, interns, and residents either review my medical history orally in front of me or in the hallway, and it's of course peppered with "adopted" "adopted" and more "adopted." The reason I sit here, waiting for permission to shower, is because my body is a Newman body and is giving me Newman problems. But I am not a Newman by Newman standards.

There is no escaping this. Just no way.

The best thing about my hospital experience this time, other than the view out the window: I say I am in excruciating pain and people BELIEVE me. And give me wonderful drugs that make me just that little more relaxed so that I don't have to think about much at all.

Medical history? Why? You have a loving, adoptive family.

This past week has been incredibly hard. I fell off the edge of sanity, and can't quite say that I've found my way back to firm footing. It is hard to have faith in myself, no matter what anyone says to me. I know that I am a good friend, a good nurse, a good scholar, a good mom. But none of it reaches deep enough to touch that black hole in my heart that wonders why I am never exactly good enough to be loved the way I want to be.

It is Adoption Awareness Month. I have many friends who are blogging daily, and brilliantly so, about issues that plague adoptees (check out Amanda and Linda) . Because of course, most of Adoption Awareness Month is about singing the praises of "giving the gift of a child" to a loving family that wants him or her, and not so much about what adoptees feel and need and want.

What's been haunting me particularly is the issue of medical history. Most of us infant adoptees come with a medical history that was taken at the time of our births. Some histories are skeletal, some are meatier. The information, however, only represents what was known at the time of our births. People get older, things change, new diseases appear in families over time: for example, cancer, cardiomyopathy, Type II diabetes, etc. What was true of my nfamily 40 years ago isn't what's known in 2010 or going forward.

For years and years--actually, until last year--the only thing I could say was that I have a family history of hereditary spherocytosis. When doctors would ask me how this blood disorder had played out in my immediate family, I couldn't answer. I didn't think much of the blank pages, however, until I was older and had kids.

When I gave birth to a son with spherocytosis, all we had to go on was the trajectory my own health had followed. It turned out that my son is affected far more severely than I have been. I felt so frustrated and hamstrung, not being able to offer more than a shrug of my shoulders and "I don't know," when the neonatologist asked for more detailed family medical history.

Everything on family medical history forms other than blood disorders had to be crossed out with a big X and the words, "Don't know, adopted." That doesn't give doctors a lot to go on. From the position of someone who works in the medical arena, I know that it sucks. It's a good thing I didn't have any trouble with my pregnancies because I knew nothing that might have shed light on the situation. I did develop borderline gestational diabetes with my second pregnancy and guess what: when I found my maternal nfamily, it turned out that my maternal grandfather had Type II diabetes. Not surprising, then, that I had gestational diabetes although at the time there were no dots to connect.

All my patients in Labor and Delivery have to fill out an anesthesia questionnaire about family history of all kinds of things, and family reactions to anesthesia. I had to fill out the same questionnaire when I had surgery to remove my spleen, the only treatment available to ameliorate the symptoms of spherocytosis (enlarged spleen and chronic anemia). I had the surgery. All went well. It was my first surgery; I hadn't been hospitalized since my birth. The drains and catheters were a pain in the ass, but all things being equal, I did well and was discharged on the fifth day.

I went home, but the pain never subsided. I was supposed to be tapering down on the Vicodin, but something still wasn't right. I couldn't eat much and vomited much of what I did manage to eat. I had a persistent fever that was masked by the Vicodin. Still, I guessed that what I was going through was normal. It would have helped to have my natural family around to tell me that my recovery from splenectomy was atypical. I soldiered on because I had nursing school to finish.

Then on the first day of the fall semester, I woke up in excruciating pain. My parents had left in the wee hours that morning after helping me for three weeks. My husband drove off with the kids for school and for work, and I lay in bed trying to be strong. I took pain pills, tried to watch movies, and tried to poop, thinking that perhaps the pain was related to constipation from the narcotics. The pain worsened and worsened. I began to sweat. I wanted to die; it would have offered relief. I called the surgeon's office and spoke with the physician's assistant. He advised me to walk around the block to get my bowels moving. All that walking around the block achieved was having my neighbors' gardens decorated with bile. I called the surgeon's office back and was told to go to the ER.

My friend Chris drove me to the hospital, and I sat miserably for eight hours in the ER's waiting room. Abdominal pain is not high on the triage list. I was finally taken back and given merciful doses of morphine. I drank vile cups of radioactive contrast and was rolled back for x-rays and a CT scan. You know when the doctor comes right into the room after the CT scan that the results probably aren't good. It turned out that I had a large clot in my portal vein, which takes the blood from the GI into the liver so that it can be cleaned and sent into the inferior vena cava on its was back to the heart. There was basically little or no blood flow into my liver from the portal vein. My bowels were leaking with backed up blood. I couldn't eat or drink because the pain was mortifying. I had two IVs: one for heparin to thin my blood, and another for IV fluids and antibiotics.

I was given a pump with the pain medication Dilaudid, and I would have to take a hit before I could even choke down a sip of water. I ate and drank basically nothing for a week, and then was put on total parenteral nutrition because my body needed protein and calories. I was fed directly into my bloodstream, but in order not to clog my veins with the liquid food, they had to put in a central line to my heart. For the insertion I asked for an IV anti-anxiety medication and for my friend Chris to hold my hand. I lost consciousness and thankfully don't remember any of it.

The doctors decided that the clot was related to my surgery, during which my spleen had been macerated and had released far too many platelets and the splenic vein, which leads directly to the portal vein, had been severed and tied off. At the time of my admission with the clot, my platelet levels were four times above normal, which is very dangerous. I am lucky in a sense that I didn't get a clot in my brain, heart, or lungs. But it still sucked to have my GI in lockdown.

I was in the hospital for two weeks and lost almost 20 pounds. I went home with oral anticoagulants and was told I should be fine in about six months. 10 days later I was back in the hospital with horrific pain once more, and it turned out that despite my being an extremely compliant patient, my anticoagulant levels were too low. Five more days in the hospital, and I was discharged with TWO anticoagulants: one oral and one daily injection.

It was a nightmare for me to maintain therapeutic anticoagulation; I was taking doses of warfarin that would give an intern a heart attack just to get into the therapeutic zone. My genetic makeup is such that I chew through warfarin, the most commonly prescribed anticoagulant. That would have been nice to know before. As it would have been to know that there is a family history of clotting.

And as I have blogged about before, this summer I found out that I have a genetic mutation that makes it even MORE likely that I will clot. I should have had blood thinners during pregnancy and NEVER been on birth control pills. I seem obliged to live, despite omissions of information and errors made along the way.

Knowledge is power. A person should have power over her life, including making the best possible decisions about health. How in the hell can I make an educated decision without enough information? Why did/does my nmom think it appropriate to prevent me from knowing things that might save my life? How can she justify it to herself?

Moreover, how does the state justify protecting the privacy of natural families by sealing records and not collecting updated medical information at regular intervals? Not that it would have made any difference for me, because my nmom was not forthcoming about such things even when asked, but I would like to believe that most people are invested in knowing that their placed children are safe and healthy. Key words being "like to believe." Sadly, contact between adoptees and their natural families is threatening to many adoptive parents and agencies who make money off said adoptive parents. Secrecy is selfish and NOT child centered. It's not about what it should be about. Then again, it's made abundantly clear, day after day, how very little of adoption is really about the children, and their wants, needs, and desires.

The other thing that bothers me about health and adoption is the pervasive idea that babies need to be healthy to be lovable adoptable. What if a baby isn't well? It's not adoptable. Whether it ends up institutionalized or stuck forever in the foster system is another question, but there is, in my mind, nothing intrinsically wrong with an infant who isn't "perfect," and to suggest so is to acknowledge again that ugly truth that adoption often isn't about finding a child a home, but rather fulfilling potential adoptive parents' wishes to find a baby to fit their needs. That's baby shopping, and it's disgusting.

My nonidentifying information says that after I had spent six weeks in the NICU, I was deemed to be "healthy and adoptable." I shudder to think about the path I was spared.