I’m a Little POTSie…

I’m a Little POTSie…

Sometimes the only way to get the best care is to take things into your own hands. I’ve done it before, and now I’ve had to do it again. But I’m glad I did.

Dr. J had told me to call his office about a week after my testing that occurred on January 11th and January 13th to talk to a nurse about my results. So I called on Thursday the 19th. They said they’d call me back in a few days. Nothing. So I called again Monday the 23rd. The said to give it “one more day.” Nothing. I sent a MyChart message Wednesday politely demanding the results be released and for someone to call me to discuss them. Last Thursday night most of my test results were released to MyChart, but with no explanation, so I had no idea what they meant. So I called the office Friday morning to see what the heck was going on. And I was told that I should hear from Dr. J with the results and diagnosis in 6-7 WEEKS. When I asked why it would take that long, the secretary said it would take a week for the CardioNet people to send the monitor results to them (which is funny because I was under the impression that the readings were transmitted daily). Then Dr. J would have to go through my chart very thoroughly to make recommendations and he had a lot of patients so it might take awhile. She said I could schedule a follow-up if I wanted, but not to do it too soon because it would be pointless to have an appointment if my results weren’t ready. I said fine, whatever, scheduled an appointment for March 6th, and promptly started crying.

Then I decided I had had it. I work in healthcare, AT THIS HOSPITAL, and I know that unless you’re dealing with a rare disorder that requires special send-out crazy genetic testing, a diagnosis will not take 6-7 weeks. Days, perhaps, but not weeks. And the fact that the nurses hadn’t been getting back to me when I was told multiple times they would be “in a few days” really irked me.

So I e-mailed Dr. J directly on Friday evening since it was the only way I could bypass his staff to make sure they wouldn’t intercept my messages and not send them on to him, which is what I believe they had been doing. I explained the situation and respectfully demanded an explanation.

I was blasted awake by my phone at 12:25 pm on Monday and saw the hospital’s outgoing calls number. It was Dr. J! He apologized profusely that his nurses hadn’t been getting back to me and couldn’t believe that someone had told me 6-7 weeks. When I told him who it was, he was even more shocked. But he spent 15 full minutes on the phone with me explaining my results in detail:

  • Autonomic reflex tests were normal.
  • QSART was normal with the exception of reduction in the forearm, “this could reflect a focal sudomotor abnormality but would not be typical for a generalized small fiber autonomic neuropathy.”

Then it was time to discuss my blood volume and radionuclide hemodynamic test (the latter of which is apparently exclusive to this institution.) He said, “As far as your blood work goes, that’s where the money is!”

  • “She underwent a blood volume radionuclide hemodynamic study. There was no orthostatic hypotension. There was no orthostatic tachycardia. During postural challenge she had preserved cardiac index and moderate decrease in stroke index. She had appropriate increase in total peripheral resistance indicative of normal cardiovascular reflexes. She had a normal ejection fraction. During upright posture she had very severe venous pooling with a 35% translocation of her blood volume to lower extremity and abdomen. She had hyperkinetic circulation during upright posture. Blood volume is very low with the plasma volume reduction of 18% consistent with moderate hypovolemia.

Dr. J explained that when a normal person sits up or stands up, 5-10% of their blood drops down into their lower extremities due to gravity. Within 2-3 heartbeats, the vessels clamp down to three times tighter than they were to get the blood moving back upwards against gravity. In my case, 35% of my blood is pooling into my lower extremities and abdomen and my vessels aren’t tightening to push it back up, which reduces blood flow to all my other organs. My brain tells my heart to start beating rapidly to get more blood to where it needs to go, but I also have a “low fuel tank” due to my low blood volume, so there isn’t enough blood to go around.

img_0851He also mentioned my rhythm strips from my CardioNet monitor (oh, really, he does have those already? Guess they were being transmitted daily just like I thought) were ok. No arrhythmia or blockages or anything scary. However, my heart rate was generally high most of the time, with sinus tachycardia in the 120s and 130s pretty frequently, especially correlating with when I recorded feeling symptomatic.

Putting it all together: the evidence from the testing supports a diagnosis of POTS (otherwise called partial dysautonomia or orthostatic intolerance.)

But why? Dr. J believes this all happened as a result of “everything that happened to you last year.” The surgery for my endometriosis/hernia. The brain tumor. The aneurysm. Three surgeries in a four-month period. Thank you 2016; you’re still a jerk. But as for the how? Medical science isn’t quite advanced enough yet to determine what causes this type of thing to suddenly happen. I’m a medical mystery.

So what do we do? The first step is the nonpharmacological measures I’ve implemented. Dr. J suggested I enroll in an exercise rehabilitation program specifically for POTS patients they have at the hospital. I agreed, so he said he would get that arranged and have someone call me. Of course, no one from that office ever calls me so I checked MyChart this morning and my cardiac rehab evaluation and stress test is scheduled for 7:45 am on February 20th (someone kill me now.) He wants me to see him at the end of February (so I’ll just keep my March 6th appointment since that’s close enough.) Then we can discuss how I’m doing and assess the need to start any medications, such as Florinef, midodrine, and/or a beta blocker.img_0822

Even though it’s another diagnosis, I am blessed by God.

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  • Blessed that my own clinical knowledge allowed me to immediately recognize what was happening when these symptoms started. Once my labs came back negative for anemia in the ED, I knew it had to be POTS or something like it.
  • Blessed that one of the few autonomic centers in the whole country is where I work and receive my healthcare.
  • Blessed that Dr. J happened to be the cardiologist covering the syncope clinic that day, and that he did everything he could to get to the bottom of this.
  • Blessed that from symptom onset to diagnosis, it only took six weeks to diagnose me; it currently takes a typical POTS patient six years to get a diagnosis.

It’s another thing. Yes, it’s indeed another thing. 2017 wasn’t supposed to be like this. But I’m going to try and work hard to get through this because that’s the only thing I can do. And maybe life will be better soon.

?ribbonrx

39 thoughts on “I’m a Little POTSie…

  1. Just as well you got in touch with your doctor directly! I guess it’s great to have a diagnosis but a pain to have a another thing wrong. Hopefully though once you start treating it, you will feel a lot better.

    1. Yes, it’s frustrating and relieving at the same time! I’m already noticing some improvements with nonpharmacological measures, so at least that’s something!

  2. So glad you got a diagnosis so quickly! I can tell you from personal experience, it’s not the best diagnosis in the world. But once you know what it is, you know where to begin. I’m sure your doctor mentioned it, but be sure to drink a lot of water and sodium, especially with your low blood volume!

    1. I’m actually quite relieved! My doctor wants me to do 2 liters of Gatorade a day (but I’m actually doing more than that) and I’m taking salt tablets too. It’s amazing how much better I feel after 3 weeks of doing that!

    1. Thank you so much for reblogging my posts! You are welcome to reblog any of them- we need to raise awareness!

      I read your story on your blog; you’ve been through a lot! I saw on one page you mentioned possibly having an MRI in the future to rule out a pituitary adenoma as a cause of your issues. Did you have a doctor tell you that could be a cause? I ask because I had a pituitary adenoma (specifically a prolactinoma) last year that I had surgically removed in September; I was immediately hit with the same sort of fatigue you describe and the rest of my POTS symptoms (lightheadedness, dizziness, tachycardia, etc) started three months later. My neurosurgeon of course denies that the surgery could be related. Luckily, I see a POTS neurologist tomorrow after waiting six months for an appointment, and I know from other patients that he leaves no stone unturned searching for a cause. I’m very glad to hear that you’re doing pretty well. I hope I can be like that soon! ?

      1. Hello! It was such a treat to read your blog 🙂 I just started my blog yesterday and am new to the whole experience, so I really appreciate learning from those who are more experienced. 🙂
        Yes, my neurologist referred me to have an MRI done to rule out a pituitary adenoma or MS (which my dad has) or any other abnormal brain structures that would cause the abnormal release of hormones and neurotransmitters (POTS is the abnormal production/release of norepinephrine- the perpetrator of the fight or flight response).

        1. I’ll have to see what my neurologist says tomorrow! Keep up the blogging! I’ve had my blog for a year now. It’s tough sometimes to keep going; I’m in a bit of a rut at the moment, but it’ll clear. I look forward to reading more from you! ?

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