Last weekend I was telling my sister-in-law how “I hate when I have to train a new doctor.”  I said it jokingly, of course, but there is some truth there.  What I was eluding to was establishing rapport with a new doctor.  While doctors are the experts, they are not without fault.  Doctors have knowledge and experience.  What they lack initially is who you are as a patient.

Know Your Stuff

I talk about this a bunch.  We owe it to ourselves to know what’s going on with our bodies.  Even though we may not understand all the technicalities, getting the basics down is important.

Throughout your transplant experience, familiarize yourself with everything you can.

• What do your lab values mean?
• Understand the values that fall in the “normal” category for you
• Are there life events that affect your labs or how you feel physically?
• Stay in tune with small changes in your body
• Get to know the terminology
• What is the easiest and most efficient way to communicate with your team?

When doctors and medical staff talk about something you don’t understand, ask questions.  If you hear something but are unclear about it, write it down and ask your doctor about it.  When you have questions about your experiences, look them up.  You can start online (but please stick to reputable sources like NIH or a hospital site), and then verify that information with your doctor.  Make sure that the information you have heard or read is both accurate and applies to you specifically.

Every person is going to have a different experience, but the more knowledge you have, the better.  Particularly as time goes on and you can establish things that are specific to you.

Be An Individual

Each person goes through life with different experiences.  From a medical standpoint, there are procedures or treatments for an illness or injury.  Headache?  Take some Tylenol.  Broken bone?  Get it set and cast.  Too much fluid in the body?  Diuretics.  You get the picture.

But medicine is not one-size-fits-all.  We are individuals, physically and psychologically.  What works for pain for one person, may not work at all for someone else.  It’s important to pay attention to things that work (or don’t work) for you.

More than once, I have brought up something in my history when a doctor has recommended a change to my medications.  And more than once, that has been a factor in that recommendation.

One conversation went something like this, “I know that we’re trying to address the extra fluid on board.  The last time we increased my diuretics that much, I had issues with sodium and potassium.”  This resulted in more frequent labs to monitor my electrolytes.

While some doctors may not appreciate this, most find that patients who understand how their bodies react to be a positive thing.  And frankly, if they won’t listen to your input, do you want them to be your doctor anyway?

Don’t Panic and Pay Attention

During a hospital stay pre-transplant, I woke up one morning and couldn’t see.  My vision was not completely gone, but it was incredibly blurry.  I could not make out large letters on the “Call Don’t Fall” sign across the room.  I also had a large black area right in the center of my field of vision.

So what did I do?  I panicked, of course!  I couldn’t see to hit a call button for a nurse.  So, I called my mom from my room phone (because I could feel the buttons vs. my cell phone).  Since she is always the voice of reason, I calmed down and waited while she got in the car to come to the hospital.  By the way, caregivers have to take a break for themselves too.  My mom went home every night for her own self-care.  

Soon enough, doctors came to visit me.  We talked through my previous day’s symptoms of vertigo and nausea.  We talked through my medications and doses and anything new added the previous day.  He left to go look into a couple of things on my chart.  A few minutes later, walked in and exclaimed, “Aha!”

The day before, a different doctor had placed a motion sickness patch behind my ear to help with vertigo.  While this did the trick for vertigo, it was also what had messed up (very technical medical terminology there) my vision.  He removed the patch and a couple of hours later, my vision was restored.

The moral of the story?  Pay attention to the things going on in your day.  When something is weird, make a quick note.  When there are changes to medications, take notes.  By keeping track of this information, you are helping doctors determine the next steps when things do go wrong.

More About Rapport Than “Training”

I used the word “training.”  Doctors have received training.  A whole heaping lot of it.  They are the experts.  I would not be here today if it weren’t for my primary doc and several internal medicine docs.  I also have extraordinary hepatologists and a transplant surgeon who is one of the best in the field.  And without all the nurses and medical assistants along the way, I wouldn’t have had a chance.

It’s not that we need to “train” the doctors so much.  It’s more of establishing a rapport.  Show you are invested in your health.  Show that you understand what they are saying (or enough to ask questions).  Show that you listen and follow what they are asking of you.

When you demonstrate to your doctors (and nurses) that you understand what they are saying and play an active role, you establish rapport.

Simple things give doctors a better picture of the type of patient you are.  You know your medications and dosages.  You are familiar with your labs and can recall specifics.  You keep up with your appointments and come with questions ready.

All these things will give you rapport with your doctor.  Then what you’ve established is much more of a partnership.  You are taken more seriously.  They know their time is valued.  Then, when issues do come up, you have all the information at the ready which helps them use that mound of training to treat you.

Isn’t that what we all want anyway?  We want to be heard, understood, taken seriously, and valued.