Friday, November 05, 2010

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.


Amanda Woolston said...

The current state of lack of information sharing, and lack of facilitation of information sharing in adoption is disgusting.

It just goes to show how reactionary we are as a society.

We're supposed to be "fine" with not having information and be worried about who all we are upsetting by drawing attention to the fact that we're not biologically related to the family that raised us. Until we have a serious medical condition. Then, all of a sudden, people understand if we care and want information.

Preventative treatment and being able to be aware of potential problems and have it integrated into our regular care? That's a priviledge we aren't afforded.

I am just so grieved for all you have experienced. I often tell people the nightmare I had with the mysterious tumor that grew in my neck. But I can't even fathom what you've been going through :-(


Samantha Franklin said... glad I found your blog.

Marilynn said...

if you want to look I will help you. saw you on Campbell's blog. I do it for free. I also have passwords to all the detective websites and I will give them all to you privately if you would rather search on your own.

Oh its way free - I pay for all of it I've helped reunite over a hundred families by word of mouth and sometimes surprise in the past ten years just because I learned how doing it for my mom and I already was paying for the websites. Its your information and you should not have to pay to get it back.
Good luck to you.
Marilynn Huff
San Francisco

ms. marginalia said...

Marilynn, thank you!

I don't even know where to start looking for my first father, or if it's possible to find him. My fmom claims that everything she told the agency about him was made up. Something in me says that she's not being entirely truthful.

I don't know if he was a student at her college, or someone passing through. He could have been someone she met for one night, in which case it's like looking for the proverbial needle.

I am also hesitant at this point to open myself up for more rejection. I am hanging on by a thread, to be honest.

I really appreciate your offer, and I will absolutely send you e-mail when I am more emotionally settled.