Misdiagnosis and Missed Diagnosis: Part 2

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Trigger Warning: This is part 2 of a 2 part story (part 1 can be read here) of my misdiagnosis and missed diagnosis after giving birth in 2009. This post contains some references and details about Postpartum OCD, Intrusive Thoughts, miscarriage, and D&C. If you are feeling particularly vulnerable and prone to triggers, you may want to avoid this post until a later time. 

After I was discharged from my second hospitalization, I still hadn’t been able to get in to see the psychiatrist and ended up at the ER because I was out of Lexapro and had no more refills. Since TriCare doesn’t cover Lexapro on the formulary, I was switched to Celexa (the generic version) and told to keep trying to find a doctor who could see me. I called various doctors and they either weren’t accepting new patients, didn’t have any openings, or in one case, “Refused to take me on” and wouldn’t explain why. Let me tell you, this didn’t make me feel any better.

I went in to see my PCP (Primary Care Physician) to get my Celexa refilled and while I was there, he ordered a lab test to have my thyroid levels checked. I never heard anything back so when I returned to get another refill ordered, I asked the nurse about the results. She looked it up and said “Oh yes, it’s abnormal, he’ll need to talk to you about that”. When the doctor came in, I asked him about it and he said “We’ll take a look at that after we get your meds taken care of”. He never looked at my lab results and left without saying anything.

At the end of November, the day after Thanksgiving, my husband, daughter, and myself were in a car wreck. I was driving and we rearended another vehicle. I had a nasty case of whiplash and a concussion, my husband broke his ankle, and our daughter’s car seat did it’s job and she wasn’t even sore. I was given a small amount of painkillers to help with the whiplash, but the whiplash persisted past the medication. I went back to the medical clinic and saw a different doctor. While I was there, I mentioned the thyroid labs that had been done and that I was curious to know what the results were. She took a look and hit the roof, saying that my thyroid results were WAY outside normal limits. She wanted to do a re-test since it had been months since the last test, so she put in a lab to recheck my thyroid levels and put a rush on it, promising to call me back to let me know what the results were.

In less than 24 hours, I got a call back from her nurse telling me that I definitely had hypothyroidism and could I come in that day to see the doctor so she could talk to me about the condition and get me started on medication, and let me know how it would all be handled moving forwards. I was at the hospital with my husband in surgery having his ankle repaired, so I had to wait a couple of days but they got me in ASAP. The numbers on my lab results were extremely bad and I’m surprised my symptoms weren’t worse. I promptly switched doctors so that this “new” doctor was my primary and I refused to ever see the other doctor again. In hindsight, I should have filed ICE Complaints on both him and the Nurse Practitioner who ignored my Edinburgh Scale at my 6 week postpartum check up, but hindsight is 20-20 and all that.

The new doctor informed me that hypothyroidism can be caused by pregnancy. It often clears up, but in some cases it just sticks around. I was started on the lowest dose of Levothyroxine, 25 mcg, and had my thyroid levels checked again in a week or two. The repeat lab showed that my thyroid levels were improving but I needed a slightly higher dose so I was bumped up to taking 50 mcg of the Levothyroxine, and that turned out to be my magic dose. After 3 months of Levothyroxine, my PPMD symptoms were totally cleared up and I was able to wean off of the Celexa, Ativan, and Ambien. I had finally found a therapist to see, and she had me come in a little more often until we were sure that I wasn’t going to have a recurrence of symptoms but soon I was able to stop seeing her as well.

It’s been 4 ½ years since my hypothyroidism was diagnosed and 50 mcg of Levothyroxine has managed my condition ever since. Normal protocol is to have my thyroid levels checked once a year, but when I’m pregnant my levels are checked once each trimester. Even with the pregnancies, the same dose of Levothyroxine has done me right and I haven’t had the same issues, even through 3 pregnancies, one of which was as a Gestational Surrogate and ended at 12 weeks with a D&C for a missed miscarriage.

There are several morals to my story. One is that we desperately need better availability of mental health care, both inpatient and outpatient. I should not have had as much trouble finding a doctor and therapist to see me as I did, nor should I have needed to wait for a month or longer to have an intake appointment after inpatient treatment. The second moral of the story is that medical professionals need to have better training on the difference between suicidal/homicidal ideations and intrusive thoughts and between the various forms of PPMD. Screening on intake (including arrival at the ER) should include noting the differences. There also needs to be better availability of treatment options for postpartum mothers. Being put in a general hospital wing wasn’t that helpful. People who are recovering from substance abuse and addiction aren’t going through the same thing and we just weren’t able to really understand or offer much helpful advice to each other because the situations are so totally different.

The biggest lesson in this story is to be your own advocate. Don’t let medical professionals shirk on their jobs, don’t let them overlook symptoms and cries for help, definitely don’t let them leave an appointment without going over your lab results. Don’t let them rush off without giving you the attention and help that you need. This is not “causing trouble”, this is asking them to do their job. You are your own best advocate.

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Misdiagnosis and Missed Diagnosis: Part 1

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Trigger Warning: This is part 1 of a 2 part story of my misdiagnosis and missed diagnosis after giving birth in 2009. This post contains some references and details about Postpartum OCD and Intrusive Thoughts. If you are feeling particularly vulnerable and prone to triggers, you may want to avoid this post until a later time. 

In July of 2009, 3 months after having my first baby, I finally admitted that all was not well in my world. For 3 months, I had been falling deeper and deeper into a spiral of awful. Sometimes I felt indescribably angry. Sometimes I felt a deep sense of sadness and despair and would just cry and cry and cry, or maybe I’d be about to get out of the car in the parking lot at the store and suddenly burst into tears and not even know why. Sometimes I felt completely numb; I would just sit in my rocking chair holding my beautiful little girl, staring off into space, not really thinking or feeling anything at all other than blankness and emptiness. The worst of all was pictures and thoughts that flashed unbidden into my mind. Thoughts and pictures of dropping or throwing my daughter down the stairs. It terrified me and I would actually cancel appointments if I was upstairs because I didn’t want to carry my child on or near the stairs and those pictures and thoughts become reality. As soon as they entered my mind I would chase them away and hug my baby a little closer and pray “God, what’s happening? Please forgive me and make this go away”. I had no idea what was wrong with me.

At my 6 week Postpartum check up at the Wilford Hall Medical Center OB/GYN clinic, I filled out the  Edinburgh Postnatal Depression Scale questionnaire that I was handed. My answers clearly indicated that I needed further screening but the Nurse Practitioner who saw me just put it to the side without saying anything and never really asked how I was feeling, so I figured that what I was experiencing must be normal (news flash: it wasn’t). Things kept getting worse until eventually, one night in July, I found myself standing at the top of the stairs while everyone else was asleep thinking that everyone else would be so much better off without me if I threw myself down the stairs. I walked away and started to go to bed and then thought that it would be easy to take a massive amount of the painkillers my husband had left over from ankle surgery and just go to sleep and not wake up. I called the chaplain and he met me at the Emergency Room.

I was diagnosed with Postpartum Depression and transferred to a psychiatric facility in San Antonio, since WHMC (the military hospital on Lackland Air Force Base) only admitted service members for inpatient treatment of mental health issues, dependents automatically got referred out. I was breastfeeding my baby and didn’t want to have to stop, so we tried going the medication-free route first with talk therapy, both individual and group. We quickly realized that it wasn’t making enough of a difference, so on to medication it was.

During this time, one of the biggest questions asked of me was “Do you have thoughts of harming or killing yourself or others?”. I answered yes. Partly because I had found myself on the brink of attempting to commit suicide, but also partly because of the thoughts I had been experiencing. I later found out that the thoughts and images that shoved their way uninvited into my mind were Intrusive Thoughts, one of the classic and tell-tale symptoms of Postpartum Obsessive-Compulsive Disorder. I didn’t know, at the time, that there was a difference between suicidal/homicidal ideations and intrusive thoughts, or that there was a whole spectrum of Postpartum Mod and Anxiety Disorders, I thought it was just all part of Postpartum Depression. Unfortunately, it seems that none of the staff caring for me at either of the hospitals knew this either, and I was diagnosed as simply Postpartum Depression. This is one of the things that I eventually hope to see changed: to see better education for medical professionals making them aware of the differences between types of symptoms and the various PPMD.

It only took a few days after starting medication (Lexapro) before I started to feel better. Before starting medication, my mom and my husband had come to visit me at the hospital and when my daughter started to cry, it was a noticeable trigger. My mom and husband had to keep the baby up front and switch off who had her and who was visiting with me. After starting meds, I was able to cope better when she started to fuss, I started to open up a little in therapy instead of sitting huddled up in the corner unable to speak without crying. After a little over a week in the hospital, I was sent home with prescriptions for Lexapro to manage my symptoms on a daily basis, Ativan for sudden anxiety attacks, and Ambien to help me sleep at night. I was also given an appointment to see a psychiatrist outside of the hospital.

When I went to my first appointment it was a total disaster. I ended up having to reschedule after I had been there for a couple of hours and still not been seen, because I had to get home since my babysitter had to leave. They weren’t able to reschedule me for another month or so out. I ended up back in the hospital a month after being discharged due to a recurrence of my symptoms (again, the intrusive thoughts that I didn’t know much about and didn’t know how to manage), and had my medication dosage adjusted. Thankfully, I only had to stay for about a week again and was able to go back home.

To be continued tomorrow…

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Digging Deep – Why We Need to Check on the Postpartum Mom

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Neither of my two pregnancies were normal. Four weeks after my first child was born, I experienced postpartum psychosis and had to be hospitalized for almost a week. Five weeks into my second child’s pregnancy I was manic and also required a week-long hospitalization to recover from the episode. I didn’t have typical pregnancies. So one would think I would have the courage to ask a close friend or family member who recently gave birth how they’re really doing. Emotionally and mentally.

I’m sad to admit that I haven’t. But I vow to change.

One woman to another, it shouldn’t be so hard to check in. Whatever is holding us back, we need to push it aside for the reason that we could be saving another mama from more heartache than she should have to go through after bringing a new life into the world.

My idea is simple. I will visit the next one of my friends or family members who has a baby. No matter how busy I may be at the time. No matter what. I will make time because this is important and close to my heart.

I’m going to bring her a basket of fancy tea and her favorite cookies a few weeks after she’s had the baby. She’ll have had time to settle back in at home, and I’ll leave my kids with a babysitter so that I can snuggle the swaddled-up newborn and kiss the top of his or her head why my friend relaxes, curled up on the couch with a hot cup of tea.

We’ll talk. I’ll ask the tough questions. I’ll ask her how she feels since the baby arrived. How she’s handling the new addition. I’ll ask how she’s sleeping. Is she sleeping at all? Whether she’s eating enough. I’ll ask if she feels hopelessly overwhelmed. Is she scared? Whether she’s been able to bond with the baby or she feels like running away. I’ll ask if she’s had any intrusive or racing thoughts.

Hopefully she’ll be fine. She’ll be easing into motherhood slowly and surely.

But if she’s not, she may be one of the thousands of women each year who come face-to-face with a postpartum mood disorder.

I’ll hug her when she cries. We’ll cry together, this I’m sure. I’ll tell her I know how she feels because I was there once too. She will know that she’s not alone and that I care deeply about her mental health. I’ll tell her it’s going to be okay and I’ll help her find her OB/GYN’s number and we’ll make the call to get an appointment right then and there.

I’ll tell her it can and will get better, but it takes professional help.

And so we’ll make the call together.

As women, we’re the only ones who know what having a baby feels like. We need to pledge to one another that we will look out for our fellow mamas. One in seven is a startling statistic. Approximately 15% of new moms gets postpartum depression. This may be a tough conversation to have, but just think of the difference you could make in a new mama’s life if she were struggling with a postpartum mood disorder and didn’t know where to turn.

She could turn to you. She could turn to me. She can turn to Postpartum Progress and see all the incredible Warrior Mamas out there who are advocating for women’s mental health and who have overcome these postpartum mood disorders.

We can do this together if we dig deep and check in on each other.

Every time.

Photo Credit: the.redhead.and.the.wolf via Compfight cc

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Hope Is What We Come Looking For — Part II

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Even though it was 18 years ago, my memory of postpartum depression and anxiety feel as fresh as if it were last week. There was a nurse in the hospital, Mardi, who cared for me in the days after Alec was born. She sensed something was wrong and checked on me at home with a phone call. When she asked how I was, I tried to answer but my voice choked with tears. “I’ll be there in twenty minutes,” she said. I hung up the phone, and let the emotion I’d been holding back, flow. I was filled with such a degree of sadness, that I could only clutch my chest, and cry. I didn’t understand why. I loved my baby, but this feeling of immense melancholy pushed him into the background. The tears streamed down my cheeks as I stood at the window and watched for Mardi. All I had to do was make it twenty minutes, just hang on until Mardi got there. My life had become one of surviving life small blocks at a time. Finally, this nurse, who was intuitive enough to see what no one else could see, rushed up to my front door. When she saw me, she pressed my head into her chest, and in the loudest voice possible without screaming, she spoke into my ear, “I promise you, you will get better.”

I wanted that promise of “better” and I was desperate to believe her. But my thoughts, my fears of the worst, held me back. I knew something was very wrong, and I was scared enough to be worried. In the pitch black of the night, my  heart raced, I prayed over the pounding in my chest that I would be normal again. But what if I would always feel this way? Panic would rise into my throat, as I thought, what if I never get better? What was I going to believe? Was it her promise that was my hope? The part of me, too terrified to believe, scared that I wouldn’t get better shouted back no– you won’t be one of the lucky ones. You’re just too far gone. I was afraid to believe in case she was wrong. But I had to. I had a baby now and I had to do something for him. My days blurred into nights and sleep deprived, every moment felt like I was standing on a cliff, looking out over my life and the world whirred on with me lost in the middle of it. Thoughts roared in my head, Just Give Up. Run away, he’d be better off without you. I imagined myself leaving my baby in the better care of my husband, and I wondered if Alec would know that I left, for love of him. But through all this, Mardi’s voice was louder, and I heard it. She was telling me I would get better, that she had seen people like me get better, and that it would happen. But I knew it was me that had to decide –  either I would believe and try, or I wouldn’t make it. I couldn’t leave things to chance, I loved my son so much.

I remember that moment of decision with Mardi. She was sitting next to me on the sofa, I had Alec in my arms. I sat with my baby, holding him so close I could smell his breath. While my tears fell on his little face, I tried to talk but I could only sob. She understood what I couldn’t say. I heard her voice, firm and determined, break through the deafening defeat in my mind. The word “promise,” again. And then, somehow through the darkness, something in my heart lifted. A resolution, and my soul took on the fight for me and my baby. I decided to believe what she was telling me. What I felt was more than optimism, it was far more powerful than positive thought or statistical probability.

What I felt was real HOPE. With Mardi there, I called my doctor and went in to see her. Within a few minutes of talking to me, she got on the phone and called a mental health specialist. I had an appointment for that afternoon. I was started on a prescription medication that was safe while breastfeeding and had therapy sessions three times a week

I write here today, having been fortunate enough to have held hope in my arms at a time when I can say it is the only way I survived. It’s the personal experience I’ve had with hope that makes me know hope is not on a continuum, that it’s not measured in degrees or a dash marker on a spectrum. It is that complete hope, the desperate belief in something when you have nothing else. My postpartum depression and anxiety remain the blackest period of my life, and I survived.

Eighteen years ago, when I became a mother for the first time, I needed that kind of hope, more than words here can describe. I had to believe that Mardi was right. I would get better. I had to take that HOPE into my terrified heart and make it mine. From that moment on, I knew I had to wake up every morning and claim that hope for me and my son. I believed Mardi, that living spark of knowing that I saw in her eyes. I still feel that white hot commitment to hope that lit up my soul. That seed took root, and I gave it no time limit or ultimatum for when. I accepted hope on its terms and believed in its promise.

Hope gave me determination and became that tangible thing I held on to when my sanity was disappearing. The early weeks of new motherhood cracked my world in half. I needed a life saver, and I needed to never let it go. Hope is that thing that told me to look at my child with a smile on my face — always. Hope led me to the library to find CDs of Broadway show tunes so I could learn songs to sing loudly, happily, earthily, to my baby.

One morning, as I held Alec, singing “Oklahoma!” to him off-key but with my whole heart, he looked up at me and smiled. He was ten weeks old, and my heart bounded out of my chest with JOY. This was his first smile and he had it for me. I saw how beautiful, indescribable, and true, hope is. In the days to come, hope kept showing me its face with flashes of the gift that life is. And would be like.

It is this gift of hope that is flesh and blood real to me now. When I speak to new mothers’ groups, I talk honestly about my slow, struggling climb out of the depths of my early days as a new mother, about the pain of hopelessness. I tell them, in a voice that still breaks from the fierceness of the memory, my true unprettied up story from the past with the hope that they’ll believe this seemingly put-together woman standing now in front of them when she confesses about the days she thought she’d never feel normal again. That once, I was right where they are.

When I look out, teary-eyed, into the faces of the women sitting in front of me, I see them listening — and there is always that one there. The face I instantly recognize. I know what she’s come looking for. Her desperation for belief in my words so visible, so clear in her eyes, in the same way I wanted my nurse’s promise of hope for me to be real — like it’s the only thing we have.

In the loudest voice I can without screaming, I look into her eyes, and just like Mardi did for me 18 years ago, I beg her, never give up. Never give up HOPE.   

 

*This is Part II of an original series written for Postpartum Progress. Part I was published January 14, 2013.

 

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