Tag Archives: CARDIOLOGIST

POTS UPDATE ON SARAH

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A great deal of progress has been made since I last posted two months ago about Sarah’s POTS’ saga.  The purpose of sharing our journey is to get the word out about POTS (Postural Orthostatic Tachycardia Syndrome) and dysautonomia.  We also want to share any treatments that have worked for Sarah in hopes they may help others on this journey.

First of all, we’re very happy to have found an Electrophysiologist (which is a subspeciality of cardiology) who treats POTS.  This new doctor is only about an hour from our house so we’re very glad to have found him.  We met with him for the first time in February with subdued hope that he would be able to treat Sarah.  So far, after seeing him only twice and following his recommendations, Sarah is so much better!  Let me explain…

During our first appointment, this doctor informed us that she was drinking way too much water.  Whoa!  Wait a minute!  Everything we read and have been told up to this point (for the last six months) has instructed POTS patients to increase water intake!  Of course, she has been increasing her salt intake also during this time, but apparently by drinking so much water, she was simply flushing it right out of her system.  He also told her to begin drinking Gatorade because she needs the electrolytes.  This was revolutionary for Sarah!

We immediately stocked up on Gatorade but also found an organic sports drink on Amazon that is on order, along with the salt tablets that the doctor suggested.  Now, the Gatorade and decrease in water alone have not been miracle cures; however, they have single handedly aided more in her recovery than anything else aside from the Florinef!

She has had far less fatigue and her stamina has increased incredibly so.  She is still experiencing heart palpitations and the doctor has ordered a 24 hour heart monitor for her to wear for two weeks.  We should receive that any day now.  I think that will tell the doctor in greater detail exactly what she is experiencing.

Her former cardiologist ordered a post-event heart monitor but it only captured tiny snippets of cardiac information, so I feel this will be far more telling.  Sarah is off the Atenolol, which was disastrous.

Also, another disastrous drug for Sarah was Corlanor, which the new doctor prescribed.  She only took one dose, but its effects almost sent her to the ER.  We had a very scary few days.  As with any drug, some work for some patients and not for others.

We met with the doctor a few days after the bad episode and were apprehensive that he would simply write out a new script for another potentially disastrous drug. We prayed he would have wisdom to know how to treat our Sarah and I believe he did.  That was when he ordered the heart monitor.  I am thankful that he is digging deeper to seek to understand rather than gloss over her symptoms.

Before meeting with the Electrophysiologist, I prepared a cover letter to the doctor along with Sarah’s medical history and recent lab work results.  In the letter, I stressed the importance of obtaining treatment for our daughter and if he felt that he could not treat POTS, to please let us know prior to her appointment.  I stated that we did not wish to waste his time, nor ours.  We’ve seen enough doctors in the last six months and cannot afford to run in any more circles than absolutely necessary.  Included in her medical history was a chart with all of her diagnostic testing she’s had done (CT scans, etc.) so that he could clearly see the larger picture.  I believe the more information any doctor has (especially a specialist), he is in a better position to accurately treat the patient.  (not to mention, this prevents redundancy)  Yes, we have requested medical records from previous doctors, however, we have become keenly aware that often times, things fall through the cracks.  So, we take it upon ourselves, in the interest of trying to obtain effective and thorough treatment, to deliver as much information as possible.

So, I said all of that to say … After the doctor read through our little package that preceded our visit, I’m certain he understood the importance of attempting to find treatment.  I do believe Sarah is finally in competent hands…finally!  Her last cardiologist flat out told her that he could not treat her for POTS, which is why we had to find another doctor.  So many doctors, even specialists, know very little, if anything about POTS.  Since our family has never encountered a situation like this, it has been very frustrating.  I don’t think one could truly understand unless you walked through it.

POTS is not necessarily a common illness, however it is estimated that between one million and three million people in the U.S. have it!  Wow.  Sadly, it is often misdiagnosed or not diagnosed at all. It has been called the “Invisible illness”.  If you looked at my daughter, you would see a beautiful young lady, inside and out.  She’s lovely.  Sarah is our only daughter and she’s so very special to her mom and dad!  A priceless gift!  We always tell her she’s so beautiful!  (because she is, even if she rolls her eyes, understanding that her parents are naturally biased!)  But, to look at her, you would think she is just fine.  However, POTS is a dysfunction of the autonomic (things that function on their own) nervous system.  So, all these functions are happening on the inside of the neurons and axons … all invisible to the eye.

In reality and every day life for Sarah, there are lots of things happening!  When she gets up, she feels dizzy sometimes.  She’s often nauseated because the digestive system is also impacted by POTS.  She eats gluten and dairy free and is very particular about what she eats, but problems still persist.

The fatigue has improved with the advent of Gatorade but she still has limitations.  Sleep is a big problem.  Perhaps the greatest problem at the moment is the heart palpitations and sometimes heart racing.  Those are scary symptoms for anyone, let alone an 18 year old.

Lately her joints and muscles have really been bothering her and per the new doctor’s advice, she will see a rheumatologist in May.  Often she will use essential oils on her joints to ease the pain.

I’ve only outlined the most prominent symptoms at the moment, there are seemingly countless others.  There is virtually no part of the body that POTS does not affect.  It’s all very mysterious in a way, like a maddening puzzle to solve.

We are, however, very encouraged these days to be on a good path after so many dark days!

I just want to encourage you to never give up hope if you or someone you know is sick.  Keep knocking on doctor’s doors until you find someone who knows something!  I used to think doctors were experts in all things.  Nothing could be further from the truth.  Often through this ordeal, I have felt like they must be handing out medical degrees these days!  There are excellent doctors out there … it just may require a great deal of work and patience to connect with them!  But don’t give up!

My belief is that God is healing our Sarah bit by bit every day and that one day, she will walk out of this phase – completely healed!  Some days are dark.  Some days give us such hope.  But no matter what we see, our faith encourages our hearts to keep putting one foot in front of the other and press on!  Our miracle is just around the corner!

 

 

{Disclaimer:  I am not a doctor.  Nor do I play one on t.v.  Any medical advice is for informational purposes only.  Do research and seek out professional help for your particular situation.}

 

 

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