Luck Fupus

A lupus blog…

The rhythm is gonna get you tonight…

Hi my loves

For several years now I’ve been getting short of breath with exertion, whether I was exercising, walking up flights of stairs, or having sex (Daddy, if you’re reading this in heaven, the jig is up. I’m not a virgin).  After awhile I become exhausted and find myself gasping for air. I hit a wall, and whatever it is I am doing, I have to stop. No reserves whatsoever.

My care team chalked it up to the 65lbs of prednisone puff, but it still continued to occur, even after I lost (most of) the weight. Then my hemoglobin was really low so I did months of iron infusions to “top off the tank.” Higher hemoglobin means more O2 flowing through my bloodstream, but it never helped. I underwent two cardiac catheterizations to work me up for pulmonary hypertension, I’ve had blood drawn from my artery while riding a bike (it’s as terrible as it sounds), rounds of pulmonary function testing, and not one expert could give me a definitive answer. Medical Mystery extraordinaire.

I’m telling you kids, it’s hard to breathe with one of those turkey hangy things pressing on your trachea…

Frustrating, yes? I’m thirty-fucking-six, I should be able to walk up a flight of stairs or be on top for more than five minutes without gasping for air like I’ve been smoking 2 packs of Marlboro Reds a day for the last 20 years. A doctor actually told me I should tell my (ex)boyfriend to take it easy on me, and I should be more of a “passive participant.”

Good God, I feel bad for that doctor’s wife, he’s clearly not a giver.

I digress.

Pulmonology signed off on me, it wasn’t a lupus thing, it wasn’t a prednisone thing, it wasn’t a weird side effect from my medications. All signs pointed to cardiac.

So on the treadmill I ran, hooked up to all kinds of wires and gadgets, while an overly perky nurse cheered me on “Go Marla! Keep going! You can do it!”

Marla, do NOT throat punch the nurse, she’s only doing her job.

The phone rings a few days later, and my cardiologist tells me I have fairly significant chronotropic incompetence.

Incompetent? Me? When have I ever been incompetent at anything I’ve tried?

Oh right…

So yes, chronotropic incompetence. Ever heard of it? Me either.

When we hit the gym, run through the semi-annual sale at Nordstrom, or do the horizontal polka (or vertical… or upside-down… no judgement here), our bodies consume oxygen at a much higher rate. To compensate, we breathe faster to take in more oxygen, and our heart rates go up to pump blood faster to our bodies’ tissues.

In Marla World, my heart doesn’t know if I’m sitting on the couch watching The Office, or if I’m running down the street after the Mister Softee truck. When I was running walking on the treadmill for my stress test, my max heart rate reached 116, only about 60-65% of where my HR should be. Chronotropic incompetence is typically diagnosed when you reach about 80% of your max heart rate. When I do something, I sure as hell go all in. My heart isn’t beating fast enough to keep up with the increased O2 demand, so I get tired, short of breath, dizzy, my arms and legs go blue, and on occasion, my lips turn blue.

Nothing says “I am woman, hear me ROAR!” like having your (ex)boyfriend go, “Holy fuck, Mar, your lips are blue!”

via GIPHY

I’m not sure why, but that gif kills me…

When there’s no reason WHY your heart isn’t doing its job and your favorite doctor tells you, “well, you’re not an easy case,” that’s non-doctor terms for “I don’t know what the fuck is wrong with you, so I will meet with ALL THE DOCTORS to see if that amount of brain power in one room can come up with some semblance of a plan.”

So they meet; my cardiologist, her NP’s, two CT surgeons, two interventional cardiologists, two electrophysiologists, my rheumatologist, and my pulmonologist may or may not have called in on a conference line. Seriously, some of the most brilliant people in the world, in one room, to discuss little ole me. No, I’m not proud of that, but it is nice to know I have some of the greatest in my corner.

I knew going in that they were going to decide to proceed with replacing my pulmonary valve via open-heart surgery or cardiac catheterization (which, technically I’m not a candidate for, but it’s been done), or put a pacemaker in me.

Right away, replacing my valve was off the table. I get it, I’m complicated. Open-heart surgery is risky enough, add in lupus, multiple overlapping autoimmune diseases, long-term steroid use, chemo and immunosuppressants, when there wasn’t a clear-cut indication that I needed the valve… OK. Fair enough.

So I’m getting a new accessory, a fancy pacemaker, the Boston Scientific blended sensor Ingenio pacemaker.

Behold the Louis Vuitton of pacemakers

INGENIO is our most advanced pacemaker and lets the heart take the lead, intervening only when appropriate. INGENIO includes RightRate™ with the MV sensor, the only sensor clinically proven to restore chronotropic competence1. Other features include RYTHMIQ™ and AV Search+, designed to reduce unnecessary RV pacing, and Respiratory Rate Trend, to monitor respiration. INGENIO is remote patient management (RPM) enabled and includes wireless telemetry.

So basically, this thing can tell when I’m having a dance party in my living room, and will jack my heart rate up accordingly. Oxygen will be flowing to all my 2000 parts!

 

via GIPHY

I had a good run, over three years since my last major surgery, and 30 years since my last heart surgery. Recovery is minimal compared to open-heart surgery, I may be able to go home from the hospital that day, and I’ll be out of work for 3 weeks. Most of the restrictions are similar to when I had the double-mastectomy- not raising my arms higher than shoulder height, no heavy lifting.

I’m ready for this. Bring it. I want to FEEL better. I want to move on with my life, run a 5K, carry laundry up the stairs, be able to meet someone and not have to say “ohh by the way, I’m having surgery in a few weeks.” It’s bad enough I already come with a No Nipples and Out-of-Order Baby Maker disclosure.

Equally scary

The pacemaker surgery is scheduled for July 11th, feel free to send cards, meals and goodies anytime after. I kid, I kid.

Well, sort of.

OK, not really. Bring me the cookies.

More to come.

Love you all,
MarlaJan

Comments

  1. Christine Picard says:

    Love you chickadee! I know you’ll come through this in true Marla fashion. I will certainly send cards, just give me your addy. I’ll be at my shore place for the summer. If you’re feeling adventurous, or cabin fever is getting the better of you, come visit anytime! 😊

  2. Holli says:

    Message me on FB your new address!!

  3. Kelly says:

    You are my hero. This is the funniest and most poignant blog I have read in a long time. If you need anything, let me know.

  4. Joanna Rider-Bay says:

    Marla,
    You always make me laugh with your blogs. I know your health is not a joke but your upbeat sense of humor is amazing. You have gone through so much in your life and still so young. I am proud you got your own house and taking charge of your health. Once you get your pacemaker we can have a great dance party at your house. You were a great student and a now a great nurse. Thanks for letting us into your world and experience your triumphs with you. Joanna

  5. Leslie says:

    I love you! I’m thinking of you and adding good vibes! You are strong!

  6. Lisa says:

    Last time you had surgery, you needed a microwave. Let me know I’d you need anything this time. I’d be happy to help if there is something I can do. You rock!

  7. Brian Quinn says:

    I’m Breathing easier just knowing you are doing better and are ok. Used to do 5K’s weekly a long time ago and they are very therapeutic and fulfilling. Also, the baby making factory is not a big deal for a true man. Nipples are just aesthetic and don’t define a person. And blue lips were a sign that something was at least going right at the moment. Keep pushing forward and good luck with everything great that is to come.

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