My Esophagogastroduodenoscopy

Yesterday I had my upper GI endoscopy or EGD to evaluate for damage from GERD and looking for a possible cause to my mysterious iron deficiency. Everything seemed to go pretty smoothly. Sat in the prep room for a while, nurse placed my iv like a pro in just 1 stick! Then they brought me back to the procedure room, hooked me up to everything and gave me the sedation. Nurse sprayed my throat with the local anesthetic and asked me if I could feel the anesthetic, I responded with "the walls are bubbling" I'm sure that gave her her answer though. Next thing I know I'm in the recovery room very very disoriented trying to talk with no train of thought whatsoever, I kept trying to get hair out of my face my my hands weren't working do it looked pretty weird. Dr came in and much to my surprise they found a perfectly healthy esophagus, no inflammation or nothing. Honestly a little disappointed because now I don't think they will do anything to help my GERD even though I get reflux daily and wake up with terribly sore throats every morning :( but they did stretch out my esophagus a bit to help me swallow better. Right now I am still tired and dizzy likely from the sedation and pretty sore throat, no surprise though I did have a camera poking around there, and I burped pretty violently a couple times last night from the air they pumped in my stomach, but overall it went smoothly. 

If you want to better understand why people with pots sometimes faint...

When a normal person stands, their veins constrict forcing blood up to the brain and chest where it's needed, in dysautonomia...it doesn't. Those blue marks on my legs there is blood in my veins, blood that should be in my brain, and on top of that, I have less blood than a healthy person. My brain gets starved of blood until nature corrects it...by forcing me to be horizontal. I didn't faint this time, probably because I recently got an infusion of saline which helps me have more blood, but this happened in just 6 minutes!

Another medicine...

It is 3:18 am and I am beyond exhausted but can't sleep. It's been this way for a week now since the doctor put me on midodrine. I went to see the after hours doctor on Saturday and he sent me to urgent care where I got two liters of Iv saline and prescribed flexeril for my worsened insomnia...still hasn't put a dent in it. Luckily today I called to doctor and he took me off midodrine but kept me on cardizem (which is making me short of breath) and added Florinef again (gives nothing but headaches). I am very frustrated but I am hoping that soon I will get a prescription for Iv fluids... I have been falling asleep around 5 or 6 am and despite that my sister still manipulated me into babysitting my niece by myself. I need to wake up for that in three hours, so I likely won't get any sleep at all and have to take care of an infant. Pray for me I guess, that's about all that can be done now.

Got a fun new toy!

My pulse oximeter came in the mail today, and despite my worsening dyspnea my oxygen is fine.
So I am on medications ( that are causing miserable side effects btw) that is supposed to lower my heart rate and raise my blood pressure when I stand...a 52 beat per minute raise in pulse? And a supine blood pressure of 103/66, I think I'm calling the dr tomorrow, I'm not putting up with bad side effects when I'm like this!

(First picture is supine and second is standing)

Good news...not as good news

Well I had my appointment with my cardiac electrophysiologist and I was hoping as usual for Iv fluids but no such luck. Instead he started me on midodrine and raised my cardizem. It's been 2 days since I started this and already having side effects. Wait for them to pass and hope for an improvement. Although I got to be honest I don't have a lot of hope since metoprolol, labetalol, propranolol, concerta and Florinef didn't work. Still have hope for Iv fluids which help immensely.

Anyway, good news as well, I got an appointment at mayo in about 2 months. I got my schedule a couple days ago:
Day 1:
7:00 am blood test
7:30 am electrocardiogram
8:15 am chest X-ray
9:00 am 24 hour holter and bp placement
10:00 am echocardiogram
12:00 pm urine test (yay lol)
2:00 pm endocrine test
Day 2:
10:15 am autonomic reflex test
12:45 pm exam
3:30 pm POTS education
Day 3:
8:30 am exercise test
11:15 am sweat test
Day 4:
7:30 am tilt study
1:00 pm women's heart POTS consult
Day 5:
7:45 am neurology consult
10:15 am cardiology consult
1:00 pm dr frye return visit

Also hope to get as many more tests while I'm there as I can.

Good news! Receptive doctor!

I had been seeing a primary care physician who in all honesty wasn't very good since I switched from my pediatrician about 5 years ago. It was ok when I just had minor problems but when I developed a chronic illness it really got annoying. A few months ago (after my doctor refused three times to let me get a second opinion on treatment for severely low iron that she was treating with high iron diet which wasn't working) I finally decided to switch to a new dr. I had one in mind that I met before but unfortunately he was not accepting new patients, so I chose another dr in the same office. Only had 2 appointments with him so far but he's great! I have had acid reflux for the past 5 years or so, and despite having regurgitation multiple times a day on a daily basis, my old primary just always said reflux is common and told me to keep taking my meds even though it wasn't helping. But my new dr is concerned and think there may be bleeding in my esophagus causing the low iron and referred me to a GI for testing. Also referred me to an ENT for the chronic ear crackling going on six months! Also have an appointment Monday morning with my heart doctor hoping (but not expecting) for an Iv fluid prescription.

-Nicole

If you can smile through this on a regular basis, you probably have a chronic illness