POTS…. Where to Begin?

I created this blog to share with all of you what is going on in our life.  So much of what goes on in our daily life deals with my battle with Postural Orthostatic Tachycardia Syndrome (POTS).  It would feel weird to never mention it on my blog.  However, in order to share about where I am with my POTS now I feel I need to go back to share a little bit about how I got here.  Many of you have been with me along this journey but others I have met since becoming sick.  I thought this might be a good time to tell my POTS story and hopefully help others struggling with POTS. 

In April of 2009 I was a kindergarten teacher with energy to spare.  I was entering the end of my fourth year of teaching.  Like most teachers in April I was beginning to get run down but I had no idea how life was about to change forever.  Initially I came down with a bad respiratory infection.  As a kindergarten teacher I had gotten them MANY times before.  It didn’t seem strange.  However, this time the infection seemed worse and the medicine the doctors gave me didn’t seem to help.  Over time my actual respiratory infection went away but new symptoms became an issue.  I was extremely fatigued.  Just getting to the bathroom seemed like running a marathon.  I wasn’t eating and something was very wrong.  I ended up in the hospital where the doctors ran tons of tests.  Nothing showed up that was physically wrong.  My heart was looking good and I just seemed to be fatigued from my infection.  Or so they thought.  

Drew and I on our South Beach vacation. Three weeks later I became sick.

Now looking back it has become so clear that during this very difficult time God was at work.  I didn’t exactly see it at the time but when I reflect back I can so easily see where He was in my experience.  Before leaving the hospital we had to have a primary doctor listed on my charts.  At that time I only saw urgent care doctors.  God sent this sweet nurse to help guide me through the process.  She helped me select the perfect family practice doctor.  This doctor became my go to doctor and she was eventually responsible for figuring out what I had but it would take months to find a specialist that could help. 

Visiting baby Caden in 2009. I remember being so happy to see Caden and so scared with how sick I was feeling. My symptoms were not improving.

Over the next months I went to doctor after doctor trying to get tests and specialists that would listen to me.  Many of them tried to fit me in “their box” of specialty but when I no longer fit they stopped helping.  After months and months of this schedule I eventually found a cardiologist in Lincoln and took two trips to the Mayo Clinic where I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). 

My treatment for several years included several medications, tons of salt, lots of water, compression stockings and exercise.  Exercise was the most difficult because of my extreme fatigue.  Once incorporating these therapies I saw improvement in my symptoms but I was constantly fighting to keep my symptoms under control.  My blood pressure was always very low so I would feel foggy most of the day.  However, I was pleased to be able to get out of bed which had been difficult just months earlier. 

In May 2010 we adopted a golden retriever named Heber. I was forced to quit my teaching job and Heber became my constant companion. When this picture was taken I was not feeling great. We left the event because my symptoms got out of control. That the thing about POTS.... you can feel pretty rotten and look just fine. 

In 2012 I started hearing of a program that a Dr. Benjamin Levine was working on in Texas.  He had patients incorporate exercise as their main therapy.  His patients were on NO medication.  Over the year I would hear about the program from POTS blogs and hear that the program was working for patients. 

In late fall of this year I found out that after being amazingly successful in clinical studies it was now released to doctors to administer to their POTS patients.  That meant that I could start the program with my doctor here in Omaha.  It arrived in January and it was the greatest gift!

Opening Christmas gifts with my nephew. Little did I know God had another gift coming my way. A POTS plan that was going to work!

Around Christmas time I went off all medication.  It was quiet the transition for my body.  I had been on some of the medications for years straight.  My heart of course went out of control and my symptoms got worse but I felt confident because we had a plan to fix it. 

The plan in very complicated but I will give a brief overview.  The main portion of the program is exercise.  One of the most important exercises is the concept 2 rower.  I spend LOTS of time on my rower.  We purchased one because it will be something I will need to do for the rest of my life.  After completing several heart related tests and putting them into a complicated formula I get three different heart rate zones.  Every day is different.  Each day I am given an exercise format (rower, bike, treadmill), a length of time, and a heart rate zone.  I have to keep my heart rate in the zone for the amount of time on my schedule.  My workouts are never less the 40 minutes.  Most days now in month three I am at an hour or more.  I also lift weight twice a week. 

My first month and half was very difficult.  My symptoms became worse and it was hard to keep doing all the exercises.  However, at my month and half point I started to feel so much better.  My symptoms improved and I felt stronger than I ever had since getting sick.

Today I am in month three and I have started to incorporate the treadmill.  I am feeling better then ever!  I can feel my old self coming back to life.  I still have POTS and I still have days where my symptoms give me trouble.  However, overall I can’t believe how much this program has improved my POTS symptoms. 

Drew and I on a recent try to North Carolina. I got to travel and we even ice skated!

In the last four years I have learned a great deal.  This was not something that I ever saw coming.  However, God has used it to change me.  I have learned more about His grace and love during my low times then I ever would have without this experience.  God surrounded me with a loving husband, family and friends that have stood by me during my daily struggles. 

I will continue to fight with POTS each day but now I know how to best keep my symptoms under control.  I hope that anyone that may be facing POTS takes a serious look at the program from Dr. Levine.  I have tried EVERYTHING and this program has changed my life!