Friday, March 27, 2009

Golden Crisp - Part 2

(Trying to split up the posts so they won't be so long.)

It was a long wait for the cardiologist, but I think it was well worth our while. What a terrific person, great listener, obviously very intelligent...and a British accent to boot! He listened to everything from the beginning, read through all my files, and had so much to say. First off, test results!
  • Blood test checking liver enzyme - slightly high. Follow-up tests to come, but cardio-man says it's just a precaution.
  • All other blood tests, normal (They didn't release what they'd been looking for.)
  • Chest x-ray, normal
  • Hip x-ray, normal (The internist scheduled this because during examination, I had some really profound pain and nerve spasms...although I'm not sure how an x-ray would show much more than a sprain or break. =/ )
  • ECG - high heart rate -- not normal!!! :)
  • Echocardiogram - my heart is healthy! Relieved that I don't have any major valve problems. The cardiologist is confident that my tachycardia is a secondary symptom to some other major physical imbalance.

He doesn't think I have POTS because, although my heart rate shoots up, my blood pressure remains generally normal. Mom is frustrated by this judgment because it's the only POTS symptom out of about 20 that I don't or haven't had at some point, and many POTS specialists point out that a patient needn't have every symptom in order to be accurately diagnosed.

He seemed really intrigued by my:

  • constant fever (4 weeks now)
  • eye problems
  • Raynaud's
  • I was really flushed -- it looked like I'd been sunburned on my face and arms. New symptom my mom's noticed in the last few days, shows up when I'm especially active or stressed. Thinking it might be a symptom some medication may have been covering up until recently.

He's sent out for:

  • a holter 24-hour heart test
  • liver tests
  • GI tests
  • blood tests
  • Endocrine consult

There's more to be said, but I'm exhausted! ***Please*** do not make any judgments by these early results. We're still finding out what's what!

love and patience,

emma

5 comments:

  1. Hang in there Emma. Count to 10 when you start to get frustrated with those doctors, but I am so glad you liked today's cardiologist. We'll keep checking on you!

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  2. Hey Emma, pastor Chris directed me to this blog. I'll be praying for you. Also, I know they are testing for a ton of stuff and I'm not a doctor and am not trying to pass any judgment at all. But my family (mom, aunt, brother, granddad) has a history of a disease called Porphyria that is rather rare, but has many of the same symptoms as you are showing. It took forever for my mom to be diagnosed because many doctors are told that they'll likely never come across a case and most have only briefly studied it in med school. it's probably not what you are struggling with, but perhaps worth asking about. Initial testing is remarkably easy to do (It's a urine test) so it couldn't hurt to ask? Regardless... after watching my mom grope for answers for years before being diagnosed, I understand how difficult this time is for you. I am praying for you and I know God will lead you to an answer.

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  3. Emma - am continuing to pray for you and your family. As you walk this path together, know there's an entire praying/cheering section behind you.

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  4. "high heart rate -- not normal!!! :)"
    lol smiley face. Well at least they found something.

    "I was really flushed -- it looked like I'd been sunburned on my face and arms. New symtpom my mom's noticed in the last few days, shows up when I'm especially active or stressed."
    New symptoms? Bah, this thing is so annoying. It doesn't even have the common decency to be predictable. =)

    "***Please*** do not make any judgments by these early results. We're still finding out what's what!"
    I agree.

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  5. I realized today that I was presumptuous to assume that you'd appreciate readers offering possible diagnoses... I apologize. There is nothing more annoying in this difficult process than someone swooping in with an opinion with almost no context. What you are having to deal with is not fair. I'm encouraged by what I've read in this blog that through it all, you're fighting hard. When it seems to be too much to handle though, lay your worries at the feet of Jesus and let him hold you. You are so loved Emma.

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