Monthly Archives: July 2012

Mental Healthcare in America

25 Wednesday Jul 2012

Posted by in Grief

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It is a taboo topic, but in the wake of the tragedy in Colorado, I would like to share my experience with mental health.

I had never experienced an anxiety attack or depression prior to losing Ansley.  But as I tried to re-engage in life, I was often overcome with a feeling that is hard to describe.  It was paralyzing.  It was a new feeling and I didn’t know what to do with it.   It was anxiety attacks.

At one of my many doctors appointments, I had one of my anxiety attacks, but it quickly changed over to uncontrollable sobs.  My doctor asked that I seek counseling.  She was unsure if I was suffering from postpartum depression or grief and she didn’t feel qualified to make that call.  She explained, in a patient that had a normal birth experience, she would be sure it was postpartum, but with me it wasn’t that easy to determine.  

I began looking for a therapist to talk to that would be covered by my insurance.  To my surprise my insurance doesn’t cover mental health.  They simply offer a 1-800 number; a glorified suicide hotline.   And, I soon learned this is a normal practice.  Companies are not mandated to offer mental health, so many don’t.  I find this troubling; Dermatology is covered (treatment of the skin) but treatment of the brain is not? It seems like all the other organs in the body fall into basic medical coverage, but not the brain.  Brain illness is something different, something less legit or seemingly less important, at least according to our insurance policies.

Finding a therapist isn’t an easy task either.  It is much like dating.  You aren’t going to marry the first person you go out on a date with.  It took meeting with 3 therapists before finding one that I felt comfortable even talking to.  And, therapists aren’t cheap.  Each meeting cost between $75-200.  The one that I decided to see on weekly basis cost $125.  I saw her weekly, for about 5 weeks, before transitioning to every other week for the next couple of months.  All in all, I spent about $1500 in a few months on mental health care.  They were by far the most expensive conversations I had ever had, but they were helpful in getting me moving forward and getting back to my life.

Bottom line, mental illness is treatable.  There are medications readily available.  So why do we make it so difficult? While many people argue about gun control laws after a senseless shooting like the one in Colorado last week, I argue that we need to take a long hard look at our mental health care system.  For someone to open fire in movie theater, a school, a summer camp or a shopping mall, they must have some mental health issues that need to be addressed.  I also don’t think their mental health issues can be resolved with an 800 number and many state hospitals and institutions have been closed due to financial reasons.  The options for mental health are few and far between especially for those that have limited financial resources.  I do realize that someone would have to seek help to even benefit from mental health care, but maybe, just maybe, if it wasn’t so expensive and was readily available {read: part of mainstream health care and insurance} a future tragedy could be prevented.

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Questions

13 Friday Jul 2012

Posted by in Stillbirth

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One of the challenges I have faced over the past 16 months is quieting all the questions that frequently fill my head.   Questions most of which don’t have answers.

  • Why me?  Or what did I do to deserve this?
  • Did I do something to cause this?
  • Could I have done something to prevent this?
  • Will this happen again?

…Just to name a few

I have spent hours and hours reading medical journals and anything else I could find on HELLP Syndrome seeking answers.  There are tons of theories and even more statistics, but at the end of the day they all say the same thing.  Because there is no known cause; there is no known way to prevent HELLP and the only treatment is to deliver as soon as possible.  How can this be, with so many advances in modern medicine that so little is known about this deadly condition?  {Yet another question}

As I researched, the question that really got under my skin was: why had I never heard of this before?  I read baby books and spent countless hours on baby websites, not once had I heard of HELLP Syndrome.   I was very annoyed when I went to the March of Dimes website and there was no mention of HELLP under pregnancy complications.  There moto is “Working together for stronger, healthier babies”.  (I am glad to report that as of April of 2012, it is now listed.  Not sure if it was due to my emails as I never got a reply, but regardless, glad it is listed now)

At times, I have felt even some in the medical industry don’t really know much about HELLP.  I say that not because of my OBGYN or my primary care doctor, in fact I have been very pleased with the care I have gotten from both of them.  But, over the past year, I have had to see countless doctors.  The first doctor that shocked me was a neurologist; I suffer from migraines and have seen various neurologists for many years.  He told me on several occasions he had never met anyone that had a case like mine; he had only ever read about it.   Months later I had to see a cardiologist, as were talking he had a nurse taking notes.  She stopped the conversation to say, I don’t know how to code this.  I don’t see HELLP as a condition in our system and I don’t know what it is.  He told her to put it under either PreEclampsia or Eclampsia and note it was HELLP.  At least he knew what category it would fall into.

The irony is while I have had doctors tell me they aren’t exceptional familiar with HELLP, every labor and delivery nurse I come across seems to feel they are an expert on the topic.  I say they feel they are an expert because it takes very little time talking with them to realize they usually are not.  I had one go as far as to tell me I should sue my doctor for missing my PreEclampsia and letting it get all the way to HELLP.  When I told her I never had PreE she said, “No, that is impossible.”  Sorry to tell her, it is very possible. My blood pressure was good until the day it all went wrong and I was not swollen at all.  I had another nurse tell me “She sees HELLP all the time, and whoever told me it was rare was wrong”.  No comment on that one.

But, as I mentioned earlier my main doctors have been great.  When I first saw my primary care doctor and told her what had happened, she asked me for my OBGYN’s info.  She promptly called her to discussed my case and asked if she could send over all of my records. She has gone to great lengths to educate herself on HELLP Syndrome.  And, any test she runs she sends over to my OBGYN.  As the patient I really appreciate this, it is nice to have your doctors on the same page and it prevents any unnecessary double tests. 

As I approached the one year post HELLP mark, my primary care doctor wanted to do a complete physical to make sure my body had recovered fully.  This would also start the process of me (and the doctors) determining if we would try for another baby.   In addition to the normal physical tests, she tested for various types of Thrombophilia.  She explained that my insurance may not cover these tests, since I had not had multiple miscarriages, but they only costs a few hundred dollars if not covered.  They tested me for both  Leiden Factor 5  and MTHFR .   

A few days later I received a call from my doctor.  The test results were in.  I tested positive for 2 variants of MTHFR and they were running an additional test to see if my homocysteine levels were affected, which they were not.  She explained about 30% of the population, including her, has at least one of these genetic abnormalities.  And really, it just means extra folic acid and maybe blood thinners in a future pregnancy.

As I processed this news, I got angry.  You mean there was a simple blood test that could have been done?  And, while maybe it wouldn’t have made a difference, maybe it would have. But, it isn’t a standard pregnancy test because someone behind the desk at an insurance agency won’t cover it unless you have had multiple miscarriages or like in my case test positive.  I realized the link between MTHFR and HELLP is nothing more than one of the many theories, but still… I am a member of a HELLP survivor board and almost everyone on that board tested positive.   Maybe a coincidence or maybe something more, guess I will add this to my list of unanswerable questions.

Nursery

06 Friday Jul 2012

Posted by in Grief, Stillbirth

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Deciding which room would be the baby’s room was not a hard decision for us.  After all, we lived in a 2 bedroom house.  The question was what do we do with the guest bedroom furniture and the office?  The room was already pulling double duty. We decided to get a storage unit for the guest bedroom stuff, but what to do with the office. The office was a necessity as I sometimes work from home. That is when we decided to take on a rather major home renovation.  Our house had a double master floor plan, meaning the 2nd bedroom was almost as large as our master and had a large walk-in closet. The closet contained its own window.  I decided if we knocked out the wall at the top of our stairs, it would expose that window allowing natural light to flow into a normally dark hallway and provide the perfect space for an office nook.  And, luckily for me, I married a very handy guy who could handle that project. 

The first thing he did was frame out 2 new closets inside the bedroom with an opening in the middle.  He figured if he built the new closets first we were less likely to end up on HGTV’s DIY disasters.  Once they were framed, he took to demoing the wall.  And, wow what a difference it made to let the sun shine in. Finally we had to drywall in the old doorway to the closet.  The whole project took a couple of months and there were only a few bumps in the road. 

Closets being framed in

Finished closets

The new office space looked great and the space worked perfect.

Office Nook

Decorated Office Space

We had decided to put the crib inside the opening between the 2 closets. So, the last step to the renovation was Chris’s surprise for me.  He ordered fiber optics and created a starry sky, wired to a light switch, so she could sleep under the stars every night.    It was a very cool touch.  By this time, we had found out it was Girl and color and design selection was under way.  I am not a pastel pink kinda girl, so I went will less traditional colors; yellow, blue, red, and brown for the bedding.  We did most of the room yellow with a blue accent wall and we did her bathroom the same shade of blue.  I realize prior to the bedding getting added most people would look at the nursery and assume it was boy based on the colors. 

The nursery colors with a pillow from her bedding

Her closet had quickly filled with a newborn – 18 month wardrobe.  We had her home from the hospital outfit and even her Christmas dress.  She was going to be a well dressed little girl. 

So when everything changed, and we learned she would never be coming home to her nursery, the question became what do you do with all that stuff?  What do you do with the room? The room that you had dedicated to her. The room you had poured your heart and soul into; making sure every last detail was perfect.

Chris came home the day before I was to be released from the hospital and gathered all the baby stuff (which had spread out all over the house) and put it in the nursery and closed the door.  I took me 3 months after she was gone to even brave opening that door and a full additional month to actually step foot into ‘Ansley’s room.’

It wasn’t long before Chris wanted to turn the room back into the guest bedroom it once was.  To me, that was impossible.  It would always be Ansley’s room.

As time went on, we eventually had house guests again.  And, every time someone slept in Ansley’s room, my heart broke just a little bit more. Reflecting back now, maybe that was one of the reasons we moved away from our first house.