LindsaySo there I was, lying in an emergency room hospital bed, covered in EKG electrodes with an IV in my arm and the BF’s (husband) hand clasped in mine when I had an overwhelming sense of deja vu. In fact, the past few weeks have been one giant flashback.
My POTS symptoms first started 6 years ago when I fainted at an outdoor festival. I was taken in an ambulance to the hospital, where for the next 5 hours they ran countless tests and gave me an IV while the BF held my hand, until I was released with a diagnosis of “dehydration”. After the ER visit, I found a primary care doctor and spent the next year having countless EKGs, scans, and lab work done. Included in the tests was an echocardiogram which came back normal, except for some mild cardiac regurgitation, and a chest x-ray, which came back normal except for a “spot” on my lung. After a follow up CT scan, the doctor discovered that I have a growth on the top of my left lung. It’s about the size of a penny. There was no reason to suspect it was cancerous, and it hasn’t been an issue since then.
Fast forward to this month – I have been having chest pain, palpitations and shortness of breath. I went to Urgent care a couple of weeks ago. They couldn’t get my heart rate stabilized, and sent me to the ER, so I had my 2nd ambulance ride ever. [Side note: Why are ambulance drivers always so cute? Do you think it’s so people forget about their pain?]
The ER doctor gave me 2L of saline IV, while the BF held my hand, and sent me on my way. After an urgent care visit, ambulance ride, and ER visit all in the same day, those will probably be the most expensive liters of saline in history.
I followed up with my doctor last week, as I’m still having symptoms, and she ordered an echocardiogram and a chest x-ray. We suspect it’s something much less serious, like costochondritis (or, as I call it, Costco-itis), but naturally we have to rule out anything more serious, and because I have lost a significant amount of weight recently without trying (more on that in a future post), we have to cover all the bases. The echo is scheduled for 2 weeks, and the x-ray was completed the day of the appointment. The doctor called me a few hours later to discuss the results of the x-ray and said everything came back normal, except – you guessed it – I have a “spot” on my lung. ER visits, ambulance rides, echos, and concern over a chest x-ray – I feel like it’s 2010 all over again.
The issue now is whether Spot has grown over the past 5 years. The doctor made it sound like it is now bigger than the size of a penny, but I still maintain that it’s probably just a piece of pizza that got lost on the way down. Or a Dorito.
Stay tuned while my doctor compares the “spot” on the x-rays for changes in size or shape, and we discover whether the pizza was thin crust or deep dish.
And if it is really 2010, buy stock in Tesla. Trust me.
“It’s just a bad day, not a bad life.” – Anonymous
Smell ya later.
– Linds
Linds,
I read this–and it’s like I am re-living my past.
Sick, weak, losing weight, nausea, faint–blurred vision–POTs–Orthostatic hypotension–the list is VERY long–we are supposed to be over 90% water!
Shaking –in shock–feeling like I might die?
Two liters of saline and I’m better?
Diabetes Insipidus. My GP apologizes saying, “ya know it’s NOT the first place you’d look.” He almost lost a close friend from this and STILL did not catch it.
DDAVP –synthetic anti-diuretic hormone cures it–0- side effects.
They give this to kids that bed wet.
Without it, you can die from a warm day.
Shock.
Meds all act odd?
Have you ever made pre-sweetened Koolaid with too little water? It’s all too concentrated? Add water and it’s like it should be.
All while docs scratch their heads –talk slight dehydration–odd heart beats–fainting–and asking if you’ve been stressed and such.
Ddavp is MUCH cheaper than ER visits for low bp–high heart rates–and a couple of liters of saline that acts like magic–because more water in your body and salt to hold it is exactly what you need?
Swelling tummy? Fat ankles?
Is your body trying hard to hang onto water it needs?
Drinking water helps–salt too–but the problem is putting it out faster than it goes in–no matter what. Get a bit overheated and BANG–down ya go!
Ever pee clear?
Ever drink a bottle of water on a hot day and notice it pees out instantly?
The tests are a simple blood draw– for anti-diuretic hormone–blood “plasma” osmolality –and urine osmolality .
Only other test is a basic metabolic panel done whenever you show up in an er–electrolytes–to see if you are dehydrated–already you know you have been.
Ddavp alone cleared up 75% of my dysauto symptoms–florinef the rest.
Is worse if you just happen to be “gifted” with low BP to start with.
As always, I hope this helps!
S
Sandy, thank you for your comment! How were you diagnosed with Diabetes Insipidus?
Sounds like my last couple of weeks… also have a hilar lymph node (actually 2) in my left lung… doc says not to worry. Weird increase in POTS symptoms. Diagnosed in 1996, disabled in 2004… now just strange things going on. They seem to blame it on diabetes (regular kind- not insipidus- very different creatures). ER on 10/30. Hadn’t been in the ER for years.
I hope you feel better soon!
thank you!
Hi Lindsay, I am sorry to hear about your ER visits. Hospital visits always make me think. Like how did I end up here again?? Lol. Im still wondering if a Gardasil injection I had 9 years ago could of caused my pots. Idk. I appreciate your humor!
thank you!
there were actually a couple of discussions this week in our online POTS group about Garadasil – it seems quite a few people developed symptoms after receiving the vaccine. a recent study suggests there is a link between the two – http://www.ncbi.nlm.nih.gov/pubmed/25882168
Sounds very familiar…. the last 6 months have been a repeat of the ‘bad year’ when the dysautonomia was diagnosed (1996). Now, I’m looking at a 3rd endoscopy in 4 months with an ultrasound and biopsy of some “clinically significant lesion” found during a work up for swallowing issues and worsening GERD. Turns out I have achalasia (erratic contractions of my esophagus)- and the weird lesion. A couple of lymph nodes turned up on a recent chest x-ray, so of course (as an RN- disabled, but been one since 1985 and I keep my license current so I don’t lose my earthly identity) I freak. :/ I hear ya- it seems like one big sadistic roller coaster sometimes.