winter white medical updates

January 4, 2013

illness

Phil goes in for surgery this month. The battery on his built-in heart pacer and defibrillator—a unit that works 100% of the time, no breaks, and without it, his heart would stop completely—runs out within a month! These things are supposed to last for seven years or so, but because it’s always going, he needs one sooner. Fast! I am very nervous, despite the fact that this is “routine,” “overnight” surgery. There are leads, plugs really, anchored into his heart. These leads/wires are attached to a device. The device is low on battery power and needs to be swapped out for a new one. Phil wants to switch to a new manufacturer, a different machine, one known to have a longer battery life (from Medtronic to Scientific Atlantic)… and yes, this makes me think of my TV Cable box. They are both designed to work with the same leads… you do NOT want to mess with those, but they’ll also likely have to go through Phil’s groin, to set up some secondary support during surgery… because the heart needs the support 100% of the time, and how do you swap and set it all up in a matter of seconds without the heart shutting down? You rig up a backup unit or some such thing. Then there’s recovery. And that waiting room. A new waiting room, on the North Shore of Long Island this time, but still. The “could go wrong” thoughts are willed aside. But in the meanwhile, I have cramps just thinking of the surgery date being added to my calendar at the end of this month. Jan 27th. I’ll be here, in a waiting room, but here, on the blog, hiding.

“I’m so happy to know you,” dear missed friend. I’m speaking of my irregular spot, now that I’m a 37-year-old girl supposedly in menopause, spinster outlook really, to the point where I feel like admitting my life, that if you looked at my family album, you’d ask “who’s the fat lady with all the hair and heavy brows?”, and I’d say, “my aunt” then look away, betraying my high opinion of myself. I’m heavily drugged.

My doctor yelled at me this morning. There’s no other way to say this, so I’ll just put the graphics out there like meat on butcher paper. I soaked through, everything. I woke up as if I’d killed someone. I didn’t want to alarm the kids, sending them to take their own showers. Lucas wouldn’t. I wouldn’t fight him, promising he could bathe after school. I didn’t have the strength.

My pajamas looked like evidence. I tried to be casual about all the blood, as if I were a girl in summer, reaching for a sweatshirt to conceal a massacre. I’d left a message for the doctor last night, explaining that I was the patient she’d been seeing since July, on 1mg of Estradiol and 200mg of Prometrium, for 10 days a month, the latter designed to shed the uterus lining all at once, to simulate a period. Only, in truth, I stopped taking the Prometrium, believing that I was about to ovulate. I thought for sure I was right, because in skipping the prometrium I did indeed get a period. The next month too. And then this month, I bled nearly every day, not extraordinary, just there. But yesterday and today have been crime scenes, extraordinary. Way too much information, I realize, but this Greek Tragedy blog could use some blood, plus it’s a record, and I will forget and need to look back at the proof.

The doctor returned my calls this morning, sounding thoroughly annoyed. Not understanding why I’d stopped taking the Prometrium, not understanding that I thought there was hope, that I felt there was a natural period about to happen (and there was, no?!). Maybe my diagnosis was wrong. Maybe going Paleo fixed something. Maybe I’m not in premature menopause. Maybe I can fix this. She said, “You won’t shed the full lining unless you take the Prometrium, so what’s happening is now you’re bleeding through.” I didn’t know what this meant. I was on my car hands-free speaker, enroute to the pharmacy for tampons and Midol. I didn’t want to sound like I was shouting, so I just listened, a wimp. She must have been responding to my first message, where I’d told the receptionist, “I’ve been bleeding off and on all month.” That makes sense, bleeding through, not shedding the lining all at once without the prometrium. But what about this EXCESSIVE blood, worse than when I’d miscarried, soaking through jeans and tampon and tissues? “Are you bleeding now?” She asked? This lead me to believe that she clearly didn’t get my 7am message this morning where I called to say, “Something is really wrong… for me.”

“Yes, very much,” I said.
“Then you need to take the prometrium right away.”

It’s now 11am. I just purchased storage bins for holiday ornaments and a Dyson Ball (DC 41 Animal) vacuum cleaner for $600, hoping to spend the day cleaning up pine needles and storing a perfect Christmas in a box as I watched “Now, Voyager,” where a psychiatrist helps a Boston spinster, who finds a man. Prometrium is a drug you take at night because it makes you dizzy and exhausted and loopy (my kind of drug, quite frankly). But “right away” means now. So, now I’m drugged with the door unlocked, in case I pass out, and the kids return home on the bus and no one answers the doorbell. Here’s to hoping they don’t find me passed out in a pool of blood on the sofa.

This, dear reader, is what happens when you try to wing it and play doctor… with yourself.

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20 Responses to “winter white medical updates”

  1. Englandia Says:

    Be safe. I hope you will feel better stat. This sounds very scary!

    Reply

  2. Stephanie Klein Says:

    My good God, why on this day would I choose to watch, “We Need to Talk About Kevin.” I want to throw up at the very least. I thought it was about Autism. In light of Sandy Hook Elementary, this was terrifically brutal.

    Reply

  3. 3 teens' mom Says:

    Shit, oh dear. God, I hate blood. Doesn’t matter if it’s mine or someone else’s, it’s just something that simply needs to stay inside.

    Before I had a uterine ablation at age 36 (best thing ever), I had periods like that – I’d be down for the count for days on end with waaaay too much blood appearing at inopportune moments (like I was at a committee meeting, sitting in a congressman’s wife’s living room on her WHITE sofa when I felt that awful blood gush…god that was embarrassing).

    Wish I were close and could bring you some tea (or vodka) and company.

    As far as Phil and the ICD/defib, we work with these all the time, and have never heard of Scientific Atlantic…are you sure that’s the name?

    Courage and strength to all y’all.

    Reply

      • Stephanie Klein Says:

        He has an ICD implantation (implantable cardioverter defibrillator). He currently has Medtronic.

        Reply

        • 3 teens' mom Says:

          Okay – good. They’re both good. His doc should have a pretty good handle on both of them, and doing some private research is really great. He’ll be fine – they replace these things all the time in grown-ups. Nonetheless, I know it’s stressful for both of you. Hell, I almost passed out when they took a routine blood sample from my 20 year old daughter the other day!

          Reply

        • Green Says:

          My bro has the Medtronic one – his ICD replacement was out-patient but his heart could maintain itself for the surgery. His big complaint (aside from the disorganization and poor communication of the hospital (in SF)) was that they put this device in front of the pectoral muscle, rather than behind. So (kinda weird) he had me feel his chest and I could absolutely feel the outline, the hard ridges (they gave him the old one in a ziplock baggie) and he feels uncomfortable – saying it feels like it’s in the wrong place.

          Reply

  4. Jaime Says:

    Totally get it. Having suffered from fertility issues myself, you desperately want to have some sort of control over your own body, especially when it’s feeling so out of control. It’s so very hard relinquishing control of your body and it’s highly sensitive chemistry to a doctor. How can they really understand what you’re feeling? What about a woman’s instinct? You thought you were doing the right thing and your doctor could have been a bit more understanding. Best now to just do what they say and give it some time. I know it’s so, so hard. And scary. Hang in there.

    Reply

  5. Thought you were done Says:

    OMG, so glad to hear you got a $600 vacuum cleaner. Seriously, thank god.

    Reply

    • Stephanie Klein Says:

      Saw it and wondered what made a $600 vacuum machine tick. Our last home rental was all floors, so we got a Roomba to clean up after us. Which is fine for floors, not for this New York home rental, equipped with really cheap carpet that pills and leaves carpet hair balls everywhere. It’s awful.

      Sad to report “the Animal” is going back to the store. After searching through consumer reports, it seems I need to get either the Kenmore Intuition 31100 (priced at $250) or the Hoover WindTunnel Anniversary Edition U6485-900 (priced at $230). Apparently, the upright is still the way to go over the bagless canisters.

      Reply

      • Tobey Says:

        I got that Hoover model and love it. We have Turkish carpets that my BIL brought back from Turkey, as well as some cheap Target ones, and it cleans both really well.

        Reply

  6. Laurie Says:

    Have you seen Your Sister’s Sister? Great movie!

    Reply

  7. GP Says:

    Stephanie,

    I’m so sorry you’re going through this! I felt compelled to reply to this post as I also have been through Hormone Hell. The nine cycles of Dante’s Inferno is more like it! Waking up in a pool of my own blood – check. Gusher on the conference room chair in the middle of a work meeting – check. Visit to the ER for two units of blood because I’d been bleeding so long and so heavily that I was severely anemic and in danger of renal failure – check.

    Yes, someone else DEFINITELY gets it!

    As someone who has been on hormone replacement therapy for 26+ years (because of a genetic abnormality), I can tell you that it sometimes takes a while to get them balanced, so try not to fret over this episode. Patience and tenacity will serve you well.

    A word of advice: I would strongly recommend creating a spreadsheet (or whatever form of documentation you choose) for the sole purpose of tracking your periods and when you start/stop taking your hormones. A day-by-day calendar indicating what meds you were on and the heaviness of the flow will help you and your doc figure out what’s going on. It helped me.

    Best of luck with this, and with Phil’s surgery — please keep us posted!

    Reply

  8. GP Says:

    One more thing; regular blood tests of your estradiol and progesterone levels are CRITICAL.

    Reply

  9. Suzanne in Austin, Texas Says:

    I hope that you are better soon with more peace of mind as you continue the roller coaster ride that is your body! BTW, we just got a Miele bagged canister vacuum and really love it. Take care.

    Reply

  10. Kim Says:

    The blood thing sounds like a nightmare. i hope the prometrium stops it all. Mieles are great – they last and last, so are worth paying the extra for. As for Phil – that will be ok. the groin part is for the temporary lead for the temporary pacemeker which will be going when they disconnect his pacemaker – so he wont do a flat liner. Then the just have to unscrue it all and screw in the new one, once that’s attached it should be working – then take out the temporary pacmaker and viola – finished. Only thing – I assume they dont have to check that the defib part is working – they should have done all that in the past when they put the lead in.

    Reply

  11. Lynn Says:

    My carpet warranty is voided if I use a Dyson. I was informed the Dyson bristles shred the fibers. I bought a Riccar-made in America!-and it’s the bomb. Pricey, but will last forever.

    When you get through menopause, it’s the best thing ever. NO MORE BLOOD. Sex anytime you want. Freedom!

    Reply

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