Being a Healthcare Advocate

An advocate is one who stands in place for another, who fights for another.

I am Sarah’s greatest health advocate.  Sarah is my 18 year old daughter who was recently diagnosed with POTS.  (I wrote a lengthy post on this that you can check out if you’d like.)

I suppose being a mother predisposes one to being an advocate.  After all, no one wants what’s best for their child more than their mother.  I have become a “Mama Grisly Bear” when it comes to my daughter.  My further training in this regard came in recent years, caring for my aging father.  He particularly has needed an advocate during doctor visits and his hospitalization several years ago when he survived sepsis.  I told him then that I would always be his best advocate and I meant it.  I still am.

In recent months my role as “Health advocate” has expanded to include my teenage daughter, Sarah, who has seen more specialists than one can imagine over the last year.

Last October I became convinced that my daughter’s symptoms matched those of patients with Lyme disease.  In fact, I was pretty sure she had it.  Of course, I have no formal medical training (unless you count being a nurse’s daughter).  🙂  I read articles online and really researched this.  I spoke with friends about it and they, too, were fairly convinced.

So, when we met with Sarah’s new primary care doctor, we strongly requested her being tested for Lyme.  And not just any old test.  We had read that the Western Blot test was the most accurate and that was what we wanted.

Not only did her PC order the Western Blot test, but also ordered another Leukemia round of blood tests as well as any markers in her blood indicating other diseases.  We were glad she was so proactive in ordering these tests but were sent on another emotional roller coaster while we awaited the results once more.  Thankfully, all results were negative!

Because Sarah has seen so many specialists, we always type up a “Medical History” information sheet, which is typically several pages long and includes all recent MRI’s and CAT scans and other diagnostic testing.  I also photocopy all recent lab work results so they know instantly what she’s already been tested for at a glance.

I’m sure some smile at this and perhaps think my efforts are “over the top”, but most thank me wholeheartedly for doing this.  It eliminates many questions and saves their time so they can concentrate on the bigger picture.  It also means we do not have to answer the same questions over and over again, specialist to specialist visit.

Part of being a patient advocate is steering the treatment in the direction you are most comfortable.  Example: Our family tries to eat very healthy and veers toward a more holistic path when possible.  We’re not opposed to medications, but only when necessary and if a supplement couldn’t work just as well.  I am reminded of this because several doctors have suggested birth control for Sarah as a treatment for a couple different issues (that have nothing to do with birth control itself actually).  Sarah has done some research into this drug and is adamantly opposed to using it.  I have to say that I am not a fan either and wouldn’t want that necessarily for her.  My mother died at age 53 of breast cancer and studies have shown increased estrogen levels lead to breast cancer.

Each time we have politely declined using it, both doctors were certainly understanding, which we appreciated.  (I had a doctor years ago discharge me as his patient because I refused to go on a steroid because we were trying to conceive at the time.  So some doctors believe it is their way or the highway, apparently.)

Side note:  Sarah wanted to be a midwife for a while and during that time, educated herself greatly in every aspect.  She even was able to attend a home birth, which was a memorable experience for her.

So, you might say I am a Captain of the Healthcare Sea on my daughter’s behalf, in a way.  Obviously, my daughter’s care is ultimately up to her doctors, but if I believe a leaf needs turned over, I will advocate for it.  Steering is definitely a part of being a good advocate.  So is educating yourself on the symptoms and known diagnosis.  Don’t be afraid to speak up.  In this case, it’s my daughter’s body that we are dealing with.  She may be a stranger to the specialist, but to me, she is a huge part of my world!  And my heart.

At the end of the day, I must know within myself that I’ve exhausted every avenue in an attempt to restore my daughter’s health.  I feel like I’m fighting a battle for her wellness and recovery.   One on one time with each doctor is very limited, so having medical history documented and any questions written down is vital for a successful visit.  It also eliminates “brain fog” during the visit.  It’s an amazing thing that happens when you’re finally face to face with the doctor, often after months of waiting to get in, and then all pertinent questions fly out the window.  Another thing that happens is, whatever the doctor says during the visit winds up becoming a “brain blur” afterward.  I recommend writing notes, asking questions and later documenting the visit for clarity.

I am present during every doctor visit my daughter has, even now that she has turned 18.  She’ll say that sometimes I answer the doctor’s questions and that she wished I would allow her time to do that.  So, I’ve scaled back and attempted to allow her to do most of the talking when possible.  Often what happens is that she experiences POTS “brain fog” and goes on bunny trails in response to the doctor’s questions, which can be confusing and time consuming.  And each visit is so key to Sarah’s recovery that I feel like much is at stake and we must make the most of our time.  So, I speak up when I think it’s useful to the doctor’s understanding of her symptoms.  Sarah thanks me.  Most of the time.  😉

Follow up is another major component of advocacy.  It has been amazing to me the degree that I have had to involve myself and relentless messages to doctor’s offices in order to obtain lab or other diagnostic testing results.  It matters to no one more than you and your family.  Why wouldn’t you follow up?  If the doctor says the lab results should be ready in three days.  Guess who’s calling in three days?  Me!  The sooner we have the results, the sooner treatment and recovery can begin.

Have you ever had to be a staunch advocate for a loved one who is ill?  If so, can you offer any sage words of advice?

 

{Medical Disclaimer:  I am not a doctor.  I don’t even play one on t.v.  I am a mom.  A very loving and dedicated one at that.  The information contained in this blog and any other article on my page are based on our experiences, what we’ve read and our opinions or understanding of POTS.  Please consult a licensed physician for advice and conduct extensive research on your own.}

 

 

 

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5 Comments

Filed under POTS

5 responses to “Being a Healthcare Advocate

  1. Sheila Scorziello

    So sorry to hear all that’s been going on with your family, especially your daughter. Know that we will keep her and all of you in prayer. Health issues are so hard because they also affect our emotional and mental state. It’s hard to remain up and think positively when struggling just to get through the day. But thankfully in those moments, the Lord carries us. God’s blessings on you all.

    • Thank you so much for your kind words and most of all, your prayers, Sheila! They mean so much to us! We are convinced this is all a testimony in the making and at the end of the day Sarah will be able to help someone else who is walking down this road in the future. Nothing catches God by surprise and He certainly has carried us during our darkest nights! He is a loving God and we know that He is working all things together for our good and ultimately His glory! Blessings to you as well! 🙂

  2. Your daughter is certainly blessed to have you as her advocate. So much of healthcare is now directed towards treatment or prescriptions that are not necessary (when I left a new primary care doc a few years back after a physical I had a handful of prescriptions I never filled)
    I will be in prayer for good health for your daughter, and wisdom for those who treat her.
    Thanks for following my blog, my hope is that you will be encouraged by it.
    Blessings and peace,
    Cliff Craig

    • Cliff, thank you for your kind words & most of all, your prayers! You’re right – it’s a medical jungle out there & you have to arm yourself with as much knowledge as you can and pray for wisdom and direction for all involved. Blessings!

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