Last year I wrote here about my initial experience with the VA during my pregnancy with Austin. So many of you reached out and helped me make my voice heard online and the VA eventually heard me and decided to treat me throughout my pregnancy again. Dealing with their mental healthcare system hasn't been easy since I gave birth a year ago. It's been manageable, but it's been a process that has challenged me significantly.Read More
It's been a long week. It's kicked my ass, but rest assured I've been fighting back. Monday, as you know, I learned that the VA (the Central TX VA healthcare system in particular) does not provide psychiatric treatment for women veterans during their pregnancies. They don't provide treatment because a pregnant veteran who requires (or at least wants to utilize) medications as part of her treatment during her pregnancy is carrying a potential lawsuit in her womb.
It doesn't matter if the medications she's on are deemed safe by reproductive psychiatrists, obstetricians, and maternal mental health experts in the civilian sector. It doesn't matter if the risks of the potential birth defects associated with those medications are significantly low, and the benefit of the mother being treated outweighs the risk. How the mother's illness affects her and her child during pregnancy does not matter to them. In their mind, the risks associated with a mother's untreated mental illness during pregnancy and its effects on her child in the womb aren't that important.
The VA made it clear to me on Monday that by discontinuing my medications, they could care less about my mental health and they are far more concerned with being held liable for an incidence that the research and my obstetrician says is less than 1%.
The stupidity of this whole situation is they failed to see that by discontinuing my medications, especially without notice, THEY ARE STILL LIABLE if something were to happen to myself or the baby. Discontinuing medications during pregnancy for a woman with a mood disorder can exacerbate her symptoms and puts her at risk for relapse. (For more, read this from Postpartum Progress) Discontinuing a patient's medications and psychiatric treatment-especially without their knowledge-is dangerous and unethical; to so do during a patient's pregnancy not only puts the patient in grave danger but also the developing baby-you know, the one they are so concerned about being held responsible for when it's born.
Stopping meds cold turkey and without supervision can have serious, and even deadly consequences. My illness is hard enough to manage with medications-without them my ability to function and care for myself and my family is significantly impaired, and the risk of my falling prey to suicidal ideation increases significantly.
The VA has been in charge of my mental health care since my diagnosis in July 2011; for them to just decide to "drop" me and try to dump their responsibility on my obstetrician, (not knowing if he would even be able to continue my medications, as they had never spoken to him about my mental health or OB care)? Yes. I took it personally and the desperation I felt about the situation only deepened my anger. The thought of continuing on in this pregnancy without comprehensive psychiatric treatment (medication + therapy at a minimum) terrified me, as did knowing my risk of developing postpartum psychosis is 25-30% higher than others just because I have bipolar disorder. I felt and still feel that I shouldn't have to fight to find and pay for treatment through a private psychiatrist and therapist when the VA has already been treating me. (For the record, Austin lacks psychiatrists who treat pregnant women AND who offer affordable care. Trust me, I've called 38 of them.)
If you follow me on Twitter you probably witnessed my emotional and enraged tweets to the Dept of Veteran Affairs' national account. Sure, I made phone calls to voice my anger and search out an answer and resolution, but I threw caution to the wind and let my anger do the talking tweet after tweet in the hopes they'd answer. I knew it was a long shot, but as desperate and fed up as I felt, I figured I didn't have anything to lose. So I unleashed my fury. I ranted. I wrote a post here and cross posted it on BlogHer.
Guess what? They listened. The social media manager for the VA's twitter account responded to one of my tweets Monday evening and Tuesday morning DM'ed me asking for my last name and last four of my SSN to pass along to the patient advocate in Austin. I don't know what was said during their conversation, how many people they called or who on the VA totem pole here in Central TX they got ahold of, but at 4:30 on Tuesday, the director of the VA mental health clinic in Austin was issuing me an apology. AN APOLOGY. From the VA. Y'all. This just doesn't happen. If it's one thing I know from dealing with them since I separated from the Air Force in 2006, it's that they don't apologize for shit, no matter how royally they screw things up for you.
So next Tuesday, I will be seeing a new psychiatrist-one who is a "clinical pharmacologist who is well versed in medications and can assess your treatment plan with [my] OB," since my OB "doesn't have a problem with you taking these medications and deems them safe." (But I thought the VA here didn't have anyone "well versed" in such matters? They must have hired someone pretty quickly if that was the case up until Tuesday!) I'll also have my own therapist and will FINALLY be getting the psychotherapy I've been requesting since I moved here in August.
I also called my OB and informed him of what was going on. Naturally he was both hesitant to prescribe me my meds and confused as to why the VA was refusing to treat me, yet expecting him to. Although this upset me, I didn't blame him-I'm a new patient, he's not the one who originally prescribed me the medications or diagnosed me, and the VA didn't even call him to discuss my mental health history! Nevertheless, he DID prescribe me my Lamictal and refilled my Prozac, saying he would call the VA clinic himself and advocate for me. "We will FORCE the VA to be responsible, and threaten malpractice if they don't. They're still liable for your care. This is unheard of!" (Have I mentioned how much I love my OB?)
So. Tuesday I find out if this is all legit. I'm hoping it is. I'd really like to be done with this and be able to work toward my goal of being well this pregnancy, hell even enjoy it. I haven't been able to do that so far because physically it has sucked, and mentally I haven't had the tools I need to manage my illness. Hopefully now I do. I have my meds, and hopefully Tuesday I find that I have a medical team dedicated to overseeing my treatment. Cross your fingers for me?
Last thing: This isn't the end of this issue for me. Sure, I got their attention and pressured them to take effective action to fix this for me and they did (which, I'm telling you is a miracle), but now that I know that I have the power to get their attention? I plan to advocate my ass off until their approach to maternal mental health changes and they incorporate it in their efforts to serve and care for women veterans. As I stated in my last post women veterans account for at least 10% of the veteran population and are affected by mental illness. Why should their mental health care be discontinued or pushed off on an outside agency during pregnancy? In my opinion, if the VA wants to truly care for women veterans, then maternal mental health MUST become a priority. It's not enough to contract out and cover a woman's prenatal care-the VA needs to ensure that psychiatric treatment continues for those who rely on them for their mental health treatment as well. I don't have the answers on how they can do this, but I have some ideas ranging from collaborating with obstetricians, hiring and working with reproductive psychiatrists, to support groups for pregnant veterans with mood disorders, to ensuring psychotherapy services are accessible and utilized.
Women veterans with mood disorders deserve comprehensive psychiatric care and support during pregnancy-maybe I went through this to help ensure that this becomes a reality for us. I will work my ass off for years if I have to, to see such a systemic change happen.
After all, aren't women veterans Warrior Moms, too?
Oh and this right here? Made all the hell of this week worth it. I'm so glad I fought for us.
The pregnancy test flashed a positive sign on a Wednesday. Two days later, a Friday, I was sitting in front of the nurse practitioner at the Cedar Park VA Outpatient Clinic, waiting patiently for the lab to confirm what EPT had already told me. When the confirmation came, there was a congratulations, a D.O.D standard "Guide to Pregnancy" book placed in my lap, and instructions from my primary care doc to stop all of my medications immediately. No Clonazepam, no Fluoxetine (Prozac) and no Lamictal. I left the clinic with these words and a promise from the nurse practitioner: "I'm going to see Dr. A once she's done with her current patient and find out what she recommends, ok? She'll be able to give you the proper guidance on what to do about your medications, being that she's your psychiatrist. I'll call you as soon as I speak with her."
Friday afternoon came and went. No phone call.
Sunday afternoon came and I had already started to notice my mood shifting and withdrawals setting in.
Monday morning: I called and was put on hold. Left a voicemail. Called two hours later, left yet another voicemail with the nurse for the my primary care doc. Called back and tried to leave a voicemail for my psychiatrist and was unable to-the phone just rang without an answer. "She's in the office, ma'am, how about I take the message for you?" said the vet volunteer working the front desk. Ok. Left the message. Checked my phone obsessively for the rest of the day-nothing.
Tuesday morning: Called back-left more messages. Nothing.
I spent the rest of that week freaking out from med withdrawal and anxiety over what to do. Fed up with the lack of response on the VA front, Bertski and I decided that finding outside, non-VA care was the way to go, even if we had to pay out-of-pocket until I was verified as a dependent under his insurance at work. A recommendation from a friend led me to Austin Area OBGYN and my new OB. I made an appointment, and even though it was weeks away, I was able to speak to a nurse about my medications. Within an hour I had more informed guidance: "Dr. S says you can continue to take the Prozac, but not the Clonazepam. He says that while Lamictal is relatively safe to take during pregnancy, he would prefer you to try to stay off of it until the end of your first trimester-the incident of a birth defect like cleft palate forming with Lamictal is very, very low, but he always advises staying off of it the first 12 weeks just to be even more cautious. HOWEVER if you feel yourself start to struggle and you feel you need to start taking it sooner, just let us know, and we can work with that, ok? Come in for lab work tomorrow so we can see how far along you are, ok, honey?"
I don't think I've ever breathed a larger sigh of relief than I did when I hung up the phone with her. Later that day, when I checked my mailbox, there was a "CONGRATULATIONS ON YOUR PREGNANCY!" package from the Women's VA Health Clinic in Temple. (Note: all of the VA outpatient clinics & hospitals in Central TX are all spread out-there's one in Austin, Cedar Park, Temple, Waco and Bryan College Station.) There was nothing from my primary care doc or psych in Cedar Park, and I still had not received a phone call returning my messages as promised 7 days prior. I threw the package in the trash, completely disgusted.
That next Monday it came-an appointment card from the clinic in Cedar Park telling me I had an upcoming appointment with my psych. I laughed-it wasn't the first time this had happened-her just scheduling an appointment instead of actually returning my messages, but I thought being pregnant would have warranted her actually making the effort to call me. (What's faster-a phone call or the mail? The mail, OBVIOUSLY!)
I went into that appointment on March 28th ready to give her the benefit of the doubt. I left vowing to no longer allow her to be in charge of my care.
Um...why didn't you call me back? I've been waiting to find out what to do.
"I did call you-I didn't get an answer."
Um...no you didn't-I don't have any voicemail from you and I've watched my phone like a hawk waiting to hear from you.
"Well, I called, if you didn't get it, that's not my problem. Anyway, in my opinion, someone in your condition getting pregnant is just irresponsible."
"I'm sorry, but you shouldn't be on any medication-you need to give your baby the best & healthiest start possible. Taking medication in my opinion is causing your baby harm."
What if I have an episode during the pregnancy? What about postpartum psychosis? My OB said Lamictal and Prozac are safe!
"Well, I don't agree with that. All of the research says otherwise...these are things you should have considered before getting pregnant."
WHAT research? Everything I've read and what Dr. S has told me is the complete opposite of what you're saying. The incidence of the birth defects associated with these two meds is very low, I've read this myself...there are women with epilepsy who take Lamictal at much higher doses-
"So are you just going to go with what he's saying? Fine. Do you need psychotherapy? Individual therapy isn't available through the VA here, but I can see if the social worker here at this location is available-I doubt it though-she doesn't do therapy."
I left that office shaking from the anger surging within me. That was it. Bertski and I agreed that day to no longer have anything to do with her-I'd try to find a private psychiatrist or have my care transferred to a new one at the Austin clinic. Her misinformation and lack of knowledge just wasn't acceptable, and besides-it wasn't the first time I'd had problems with her lack of communication and dismissive attitude. It's what played a significant role in my being hospitalized back in October. Fed up with her neglect and lack of professionalism? Yeah, understatement if there ever was one.
I've spent the 6 weeks since then struggling to manage my symptoms while dealing with the yuck of the first trimester, Alex's autism and SPD diagnosis and entrance into therapy, searching for a therapist who accepts our insurance (or has an affordable self-pay option), and pushing myself to hold on until the 12 week mark, which is tomorrow. I've also been working with the women's health outreach specialist to get a new psych through the VA, at the Austin clinic. They're so backed up, she put in the consult 6 weeks ago, and it's still pending. (She was, however able to secure the authorization necessary to have the VA cover my prenatal care and delivery so I don't have to pay out-of-pocket or use Bertski's insurance which only covers a certain amount-so at least that's a win.)
I called the VA pharmacy in Waco to have my Lamictal and Prozac refilled today (since I only have a 10 day supply left of both) ONLY to find out that they've been discontinued thanks to Dr. A. DISCONTINUED. She discontinued my medications and did so without informing me. No correspondence, no phone call, no explanation. NOTHING.
Needless to say I'm enraged. Even more so than I was before because instead of just jeopardizing MY health, she's jeopardizing that of the baby's and that has me wanting to FIGHT. Fight for my right to better treatment, and fight because, well, WHO THE FUCK IS SHE TO DO THIS TO A PATIENT?! Maybe it's just me but I don't see how any of this is ethical.
I've spent the morning making phone calls to file complaints and to even try to get ahold of her and the director of the clinic to no avail. She's not answering her phone (of course) and the director is on vacation until May 17th. The women's health specialist is aware of what's going on and assured me she's going to do something to "fix" things, but honestly, I don't even TRUST anything VA related anymore. This infuriates me because as those of you who have been reading here since 2011 know, my psych at the VA hospital in Philadelphia was AMAZING, as was the mental health clinic and psychotherapy services there.
I'm a 100% service connected disabled veteran. I'm pregnant. I have a mood disorder. I shouldn't have to deal with this kind of treatment. I shouldn't be scouring Austin looking for a therapist because the VA here doesn't offer separate, individualized psychotherapy therapy for women in my situation. (Or women period-When I discharged from the hospital in October, I was told repeatedly that they just have general support groups-nothing specialized or one on one for women.) I also know that I can't be the only woman vet in the Central TX region who has had to deal with this pathetic system and its inadequacies. But outside of reporting her, what else can I do? I don't just want her reported, I WANT HER AND OTHER VA DOCTORS HERE INFORMED. Informed on medications and treatment for women with mood disorders during pregnancy. Trained. Educated. I want better for my fellow women vets. Since moving here I have encountered nothing but poor treatment and bureaucracy. The Central TX VA Healthcare System has done nothing but inhibit my ability to have consistent, quality, and effective mental health care.
What can I do y'all? How do I fight this so that they stop failing myself and others?
Update: I spoke with the women's health outreach specialist, and she informed me that my meds were discontinued because the VA doesn't want to assume any liability if something happens to the baby as a result of my being on psychiatric medications. Per the Chief Medical Director of the Women's Health Clinic in Temple, TX: "The VA can't assume responsibility for anything that may happen as a result of her staying on these medications during her pregnancy. Our psychiatrists are not experts in this area whereas a private obstetrician is. If he says these medications are safe for her to take during her pregnancy and he will write her a prescription for them, then she can bring that prescription to the VA pharmacy in Austin and we can fill them that way. If something were to happen, then this private OB is the one responsible, not the VA. Unfortunately this is what we have to do in situations such as this."
So. There you have it. The VA has practically rid themselves of me during my pregnancy due to my having a psychiatric condition and I'm suddenly a liability concern. Question: WHY aren't VA psychiatrists educated in reproductive psychiatry when women veterans comprise at least 10% of the veteran population and have children and are suffering from mental health issues like PTSD, Military Sexual Trauma, Depression, Anxiety, and others as a result of their fighting in combat and service?
Update #2: Several of YOU helped me flood The Department of Veteran Affairs twitter feed, sharing my angry tweets and this post with them and others like the local Fox News station here and even Rachel Maddow! At 5:29pm I received this response from their Twitter account: "
@addyeB Dismayed by what happened. I'll make sure the patient advocate in Austin hears about this." Not sure if this will actually lead to effective action, but I'll keep putting on the pressure until it does. If you'd like to help me apply that pressure directly to this patient advocate at the Austin clinic, comment here or email me! bconfessions at gmail dot com. Thank you for supporting me through this!