I’ve been putting off writing this for a while, because i bear bad news. Or rather, no news at all.

In my last post, i explained that i had an appointment with a pediatric cardiologist on July 22nd. We really though he would help me and bring me some answers…but he really didn’t, unfortunately. He doesnt really know much about the autonomic nervous system, so it’s not really his fault..but we had higher expectations.

He said it was obvious that i have ‘orthostatic intolerance’ (rising heart rate and dropping blood pressure upon standing, a total duhh haha), but he doesnt want to do anything but what im already doing, which is drinking more and attempting exercise. He did however run a test called a Catecholamine Test, which measures the level of catecholamines (norepinephrine, epinephrine, and dopamine) in the blood stream. Catecholamines are produced by the adrenal glands. If i understand correctly, dysautonomia can cause an increased level of norepinephrine upon standing, but another thing can cause an increase- a tumor (usually benign) on the adrenal gland. I dont really line up with that though. The way they performed this test was by putting in an IV line in my arm (they tried it on my hand and missed, i hadn’t drunk anything, oops!). They had me simply lie down for a few minutes and relax, then they came in and drew blood from the IV, took my blood pressure, and had me to stand up and take my blood pressure every 2 minutes for 10 minutes, then draw more blood from the IV. I should be getting the results anytime now.. but i dont expect anything to reveal anything for me. Nothing ever does.

Now it’s just a waiting and see what happens thing i guess? We are looking into getting into a program at the Vanderbilt Autonomic Dysfunction (by the way, if your wondering what autonomic dysfunction is, visit dinet.org.) Clinic which has specialists in that field who could look into my case with more details and such… with more specialized testing. I was extremely dissappointed in my cardio visit all last week, but i’ve come to realize that i’ve held on this long, i can hold on a little longer. Things will change eventually. I just have to be patient.

Here’s a few pictures from the trip to Nashville:

Well i guess that’s my update for now…i will update again when i have more news!
Thanks for reading!!

I think it’s time to share my story so far.

When i was 10, i began having a simple health problem- tonsilitis. Eventually by the time i was 12, my tonsils swelled up severely and gave me problems with breathing, so i had surgery to remove my tonsils and adenoids on January 15, 2009.

Around that time i began having chronic sinus infections. They got worse and worse until i constantly had them doubled with lung infections. I was tested for allergies, diagnosed with asthma, and put on allergy shots (Which i’m still on every other week) at the end of 2009, but they didnt help my infections. 

I entered public high school in 2010, and lasted 20 days until i had to be switched to homeschooling- i was missing too much. On November 29, 2010, i had sinus surgery where they used an endoscope to trim some things and they used balloon sinuplasty to move aside a bone.

I never fully returned to feeling normal. I just thought it was part of recovery. Through december i just rested.

Then On New Years Eve, things changed. I developed a sharp pain in my right side. This pain stayed until the end of May…. When you go to the doctor, you expect them to know what’s wrong, right? …Thats not always the case. Here is a glimpse of those 5 months.

I had 2 CT scans, 2 ultrasounds,a HIDA scan, a 4 hour barium X ray study of my intestines, 2 general surgeons, several general doctors, a 3 AM ER doctor, a GI doctor, and a gynecologist. ANSWERS- 0

In May, 2 doctors teamed up and did exploratory abdominal surgery on May 26th, 2011.

They removed my appendix as a precaution, and also found some endometriosis which they scraped out.

2 weeks later, labs on my appendix came back that it was extremely infected and inflamed on the inside. I’d had chronic appendicitis for almost 6 months!!

However, i was still very sick…. Everytime i stand up, my blood pressure drops often (to the 50s and 60s) and my heart rate goes up. 2 days after my surgery i developed bronchitis which i still have. It’s unresponsive to 3 medicines and we are waiting on a call from my doctor to see what to do.

^Chest xrays from last week^

I have many symptoms. My doctor believes i have POTS (postural orthostatic tachycardia syndrome) a type of dysautonomia ( i will make a post specifically explaining it throuroughly and medically.) On July 22, i’m scheduled to go to Vanderbilt University Hospital in Nashville, TN, which is 2 hours away from my house.  I’ll be seeing a cardiologist who will perform testing and hopefully get me the diagnosis and help i need to get my life back on track. I don’t take much for granted anymore. Many things that used to come easy to me are a struggle and a challenge for me. Some days just to stand up makes me sick. I count myself as blessed because im not as bad as i could be, although sometimes it’s very hard. Dealing with illness is a hard thing. I’ve discovered that i’m not alone, and there is alot of support online available. I decided i would like to bring awareness to my condition to the sanrio community. Soon i’ll make a post explaining what dysautonomia is, and i will document my journey and share it will all of you. Thank you for reading, and i hope you will read my future posts as my journey continues.

I used to be a very active member on sanriotown. About a year ago i started having some pretty bad medical issues, so i was MIA for quite a while. I’ve decided to redo my blog and make it to share my journey with these issues.

I am in the process of being diagnosed with a condition called POTS (postural orthostatic tachycardia syndrome.) You can go to dinet.org to read about it. Soon i will make a thorough post all about my story with pictures.

-Sarah