Appointments+too many doctors=confusion

I tried to smoosh as many appointments into this week as I could, because next week I get my AV fistula (gaaaah!) to eventually assist in simplifying treatment of my kidney related junk.  Yesterday was my ultrasound appointment.  If you’ve had any sort of diagnostic imaging done, I’m sure you know how annoying it is when the tech won’t tell you anything.  They do enough studies to be able to diagnose as well as any doctor if they’ve been doing the job for a while, but legally they aren’t allowed to tell the patient one way or another.  Unless your husband happens to be the boss, then the rules don’t seem to apply.  If I’m lucky, I can sit with the radiologist while he reads the study and does his dictation.  My gallbladder and pancreas look good, but my liver is enlarged and full of what looks like simple cysts.  Unless they didn’t show up on a non-contrast CT (which is highly possible), those cysts weren’t there in October.  My kidneys also have multiple tiny simple cysts that showed up on an MRI before I was diagnosed with kidney disease, but they were never said to be a contributing factor.  I won’t know if the liver cysts are what’s causing my enzymes to be elevated, or what’s causing the hepatomegaly until I see my CNP at the GI clinic.  Unfortunately, that appointment isn’t until March.  I’m a little anxious about it because I’m afraid either 1) The Cimzia isn’t working (as I’ve still had some bloody bowel nastiness, and increased pain over the past week), or 2) It IS working, but I’ll have to discontinue due to the probability that it’s causing liver damage.

Today I saw the cardiologist and orthopedist.  Not much to say about my ortho appointment, other than the bone appears to be developing a callus, so it should be safe to walk on now with the boot.  Yes!  I still haven’t made the appointment for the back stuff, mostly because I’ve been so sedentary from the combo of flu fuckery and broken foot, that my back pain hasn’t been too terrible.  The cardiologist went over my old records from South Carolina, where I had seen a cardiologist after several pre-syncopal episodes.  I had a tilt table test done then, and assumed it was normal because I didn’t pass out, even after I was given the nitroglycerin tablet.  Apparently that was not the case.  Unbeknownst to me, I was diagnosed with POTS then and results were sent to my primary doctor.  The cardiologist recommended florinef if simply increasing dietary sodium didn’t help me out enough.  What I got from my doctor was no mention of POTS, it was never added to my EHR problems/diagnosis list, and she told me to eat a lot of salty stuff.  So I was sent to this new cardiologist to diagnose something that was already diagnosed 3 years ago.  I had orthostatic vitals done, and he said “yep, you’ve still got POTS.”  No further testing needed.  Side note: my oxygen sat is up to 99%, what a difference a week made.  His recommendation is a low-dose beta blocker, rather than florinef, given my renal insufficiency.  I’m not experiencing edema now, but the greater my blood volume, the more work my kidneys have to do, so putting me on something to increase fluid retention could be dangerous.  It’s a catch 22 because low blood volume/hypoperfusion causes damage to my kidneys as well.  The symptoms are bad right now because I’m sick (I’m sure the tachycardia is partly to blame for the nausea), and when I’m not sick, they definitely get much worse when I overdo it.

I remember how frustrating it was to have test after test come back normal, even though I knew something was wrong.  That frustration is completely eclipsed by test after test finding more stuff that’s wrong with me.  Normal sure sounds nice right about now.  I’m bored with this sort of excitement.

7 thoughts on “Appointments+too many doctors=confusion

  1. I’m so sorry that you have had all of these things confirmed, even when (yay) you’ve been waiting so long for confirmation. Congrats on your foot healing up – go, body, go! But suckage on the rest. It would be nice if your care providers were better communicators too.

    Liked by 1 person

    • It is nice to know, since it opens up treatment options. But then of course I wonder if they got it right, or they started throwing darts at a pathology chart at some point and said ‘hey, that sounds good. I’ll give her that!’.

      The problem before I moved here is that my military treatment facility was a tiny clinic with family practice only, so I got referred outside of the mil health system. It’s not as big of an issue now, since all of my records can be accessed at any of the clinics I go to here. That doesn’t mean they actually take the time to look, and I can’t say I blame them. That’s a lot of shit to sift through haha.

      Liked by 1 person

      • I’m certain your records are vast and intimidating. I get the same reaction – “Hey, we didn’t read your records, so why don’t you tell us what’s going on?” I am suspicious of diagnoses too. Man, I hope you get some quality relief no matter which label you get pasted on you.

        Liked by 1 person

  2. I know how you feel, test after test showing more and more issues, you start to wonder what they will find next. And what’s “normal”, can’t even recall how they feels anymore lol.
    Really hope they can help you.

    Liked by 1 person

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