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Feb 27

Catching up: a Timeline

For those of you who I don’t know in other capacities (real life, Facebook, etc.), a Thing has been happening. I’ve been a little occupied, and have only been able to update in spurts and bits, but now that I think I might, just might, have a moment or two to stop and breathe, I…find myself overwhelmed at the prospect of trying to sum it up. Probably best to start with the way I summarized it on a medical form yesterday (spoiler alert: doctors are involved.).

Monday, February 11th:
I go for what’s meant to be a normal run, done inside at the gym because of weather. I manage to get 2.5 miles on a treadmill, struggling because my heart rate keeps jumping into the 150s and I can’t catch my breath, which makes me feel dizzy. Switch to the track, get in another hard-fought half-mile before my coach finds me and stops me, sends me home to rest. Suspect asthma.
Tuesday, February 12th:
(Apologies in advance for TMI.) I have an episode of black stool. Call my doc, wondering if a recently completed med could be to blame; she sends me to the ER. They confirm blood. An upper endoscopy is done, but no source of bleeding is found. I’m sent home with Prilosec and a diagnosis of “acute gastritis with bleeding.” Set follow-up appointments.
2/13:
Tired and drawn all day.
2/14, Valentine’s Day:
Feel dizzy and faint; plan to spend the day on the couch, resting. Mid-morning, I climb the stairs to use the bathroom; my heart rate shoots up above 160. I feel very faint and lie down on the floor…can’t get back up without the world spinning. Can literally see my body rising from the floor with each heart beat. Text Eric, beg him to come home. By the time he gets here, planning to drive me to the ER, I can’t move without feeling like fainting. He calls 911. ER confirms my hemoglobin level is 7.5 (normal levels are 12-16).
2/14-17:
I am admitted to the hospital. Given 3 units of blood. They do another upper endo, then a colonoscopy; no source of bleeding found. Since that leaves only the small bowel, which is in the middle and can’t be reached from either end using those tools, the next step is a capsule endoscopy, which can only be done outpatient. I am discharged, pending insurance pre-approval of the test. (SIDE NOTE: I am also diagnosed with “pernicious anemia,” with a B12 level of 169 (normal range 200-900); I’ll have to have B12 shots for the rest of my life, since I’m not making what I need to be able to absorb it from food. Also, the hospitalist thought my admitting EKG looked strange in a way not caused simply by the low hemo, so he sent it to cardio, and they diagnosed an irritating little SVT issue we’ve been trying to figure out my whole life. As soon as everything else is dealt with, the cardiologist plans an ablation.)
2/18-20:
I feel steadily better; the B12 shots aren’t difficult to give or painful, and I can feel them working to make me feel better. By Wednesday, I’m feeling well enough to go to the gym – not to work out, but to walk around the track with my coach and optimistically reshape plans for when I can safely return to training. That afternoon, I call the GI group to check on the insurance business; still not approved.
2/20, evening:
Entering church for choir practice, while signing the kids into their classes, I feel suddenly very faint. Find myself on the floor, being helped by another chorister, who is a nurse. 911 called again; my hemo level is now 5.2.
2/20-25:
After admission, I’m given a nuclear bleeding scan, which shows a “moderate to brisk bleed in the upper-left quadrant.” Thing about a bleeding scan is that it’s very sensitive, but not very anatomically revealing. I’m given an angiogram – camera on wires fed through an artery in my groin, meant to find the bleed and cauterize it – but it finds nothing. Over the next few days, I receive 4 more units of blood, and they use a CT scan to try to locate any hematomas, since the amount of blood I’m losing isn’t represented by the number of black stools we’re seeing. It, too, finds nothing. Hematology is consulted; the possibilities that I’m either not making blood or that I’m destroying it are introduced, both with problems (blood tests show new red blood cells; my bilirubin and LDH don’t show signs of broken cells). When my hemo stabilizes just above 10 for twenty-four hours, I’m discharged again, waiting for the capsule endoscopy to be approved.
2/26:
I go to the hematologist for the first of my twice-weekly blood tests (keeping an eye on my hemo while we wait.) It’s 10.4, but the arm that’s been sore since the hospital is diagnosed with cellulitis. I go to my primary doctor for antibiotics. I drive 45 minutes north for a second opinion with another GI doctor, who says everything is correct and on the right track. I drive two hours home in the snowstorm that hit while I was seeing him. While I’m gone, the approval for the test came in, and the test is scheduled for Friday.
2/27, today:
I meet again with my coach; we decide the fifty-miler is no longer going to be realistic for the fall, assuming I wanted to do well (duh). Dropping back to a 50K or marathon. On the way out of the gym, I notice my heart rate is going over 100bpm just walking through the parking lot. I call the GI, whose nurse sends me to prompt care, who sends me “either to your doctor or the ER.” I go to the hematologist, where my hemo is found to be 9.2. He gives me more IV iron and schedules me to come back tomorrow for a recheck; if I’m down again, I get another transfusion. Goal: stay out of the hospital long enough to get the freaking capsule endoscopy.

So that’s where we stand. If the capsule endoscopy shows the bleed, we’ll next move to a double-balloon enteroscopy, which sounds positively gruesome, but which could potentially allow them to fix the problem without surgery. If they can see it but not fix it, then they can mark the spot so that a surgeon knows where to cut. If the capsule doesn’t show anything, the GI doc said we’d sit tight; a double-balloon is just about as bad as exploratory surgery in terms of how the body likes it. Searching without a map is a bad plan. On the other hand, the hematologist said that if the capsule shows nothing, he wants to check my bone marrow for some reassurance that there isn’t a blood production problem. After all, we’ve only “seen” the bleed once; I’ve had black stools, but not many, and that bothers him a lot.

Scenes from my life:

My first blood transfusion. I was still feeling optimistic enough to jokingly ask whether it was the "Lance Armstrong Special."

My first blood transfusion. I was still feeling optimistic enough to jokingly ask whether it was the “Lance Armstrong Special.”

Gabe was feeling less optimistic, apparently...

Gabe was feeling less optimistic, apparently…

The Machine That Goes Ping, giving me more blood.

The Machine That Goes Ping, giving me more blood.

What a hospital room looks like. Bible, cross, old-timey radio microphone. (Actually a desk lamp.)

What a hospital room looks like. Bible, cross, old-timey radio microphone. (Actually a desk lamp.)

So. Many. Bruises. Plus imminent cellulitis!

So. Many. Bruises. Plus imminent cellulitis!

Where I now spend my days. It's also the cancer center, so it's as cheerful as you might imagine.

Where I now spend my days. It’s also the cancer center, so it’s as cheerful as you might imagine.

I’ll try to keep things updated, but typing with IVs can be tricky, so if I disappear, odds are that something like that is involved. I would really, really, really appreciate any prayers, positive thoughts…anything. (So wishing this was one of my April Fool’s Day catastrophe stories.)

13 comments

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  1. Stephanie

    Oh, man Carrie. Was wondering what was going on when it had been so long since your last update. This is really scary stuff. Good thoughts headed your way that you can get the test you need Friday, figure out what’s going on and get it resolved. I’m sure not being able to run is really messing with your mind…I’ve missed a few workouts recently and it’s like the world is ending. Not good. Hope you’re feeling better SOON!

  2. Melinda

    Sending prayers and strength your way, Carrie! So very sorry to hear about your medical mysteries and feeling poorly.

  3. Heather

    So sorry you are going through all this. I hope you get some answers soon. You are one strong lady, but I’m sending lots of healing thoughts to you!

  4. Gwen

    Wow, Carrie, I will say a prayer for you. I hope you get some answers soon.

  5. Tracy

    Sorry to hear that your blog absence has been caused by poor health. Thinking positive thoughts for you up in Canada. Feel better soon.

  6. Sue

    You (and your family) are very much in my prayers for a conclusive diagnosis and a prompt recovery. Stay strong!

  7. Stephanie

    Thinking about you today and hoping you made it to the capsule endoscopy today.

  8. Kim

    Carrie – I am so sorry to read your news. Putting you on my prayer list ASAP! :sad:

  9. ~zandra~

    I am so sorry you are going through all this. I hope answers are found- both quickly and the least painful way. Thinking of you.

  10. Alie

    That’s terrible! Hope they get things figured out soon!

  11. Tracy J.

    I had wondered what was up when those photos started popping up on Instagram. :( Scary stuff! You are in my prayers.

  12. Sara

    So scary! Hang in there, Carrie.

  13. Dorothy

    Praying for you and your family. Chin up!

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