Luck Fupus

A lupus blog…

Out of the blue…

November 30th, 1987. On this day 28 years ago I was looking back to wave to my mom and dad one last time as I was wheeled into an operating room on the 4th floor of the Children’s Hospital of Philadelphia. November 30th marks 28 years since my last open-heart surgery. I had my 6th birthday three months prior, and at that young of an age, it still blows me away that that was my norm.

I vividly remember everything about the morning of my surgery; the Barbie with the pink, purple and blue sparkly outfit that my mom and dad gave me, the cherry giggle juice, getting my IV, seeing the terror-stricken yet hopeful looks on my parents’ faces as they watched their baby get taken from them with her life literally about to be in the hands of someone else. I remember the now infamous meltdown in the operating room when the anesthesiologist said he was going to remove my hot pink nail polish (and still, to this day, don’t fuck with my beauty products!), the kicking and screaming that ensued until that poor doctor finally calmed me down by promising to buy me a new bottle of nail polish. And my last memory is the mask coming down on my face and breathing in the cherry-scented gas that put me to sleep.

Open-heart surgery

The day I got my pink nails polish

The day I got my pink nail polish

Note: Anyone who thinks young children, especially those of us who were chronically ill, don’t remember details like this are wrong. We remember so much from these experiences, and I believe no doubt mold us into the people we become.

When I received the official lupus diagnosis in August of 2008, I was shocked. Not in the ‘why me?’ sense, but because I felt like I had already been dealt enough. Wasn’t it someone else’s turn? Clearly not.

I was scared shitless when I learned lupus had caused damage to my aortic valve, but my doctors put me on one hell of a regimen of medications to ensure it didn’t get worse, and it hasn’t. Once again, my heart went on the back burner as I dealt with other SLE complications (nose tampons, anyone?) and eventually everything that led into my double mastectomy.

On November 6th I went for my six month cardiac checkup, thinking I’d be there for a little bit then get ready for my trip to Denver (I swear, posts on that are coming!). I first had my echocardiogram, and then went across the hall for the stress test.

During my cardiac stress test, I ran on the treadmill like the Little Engine That Could, while hooked up to some shit that could have been used in A Clockwork Orange. Whoever thought that hookup was a sufficient way to measure the heart under stress was clearly delusional… or a mad genius. I’ll let you decide.

Torture?

Torture?

As I was stressing my heart to max capacity, the nurse running the test all of a sudden looked concerned and asked me if I was OK. I gave her the thumbs up. I got this!

Then, the wave of dizziness hit me, and in a moment the treadmill was stopped, she pulled the plugs off my nose and I sat. My PO2 was 68% as my heart pounded away and I tried to suck in as much oxygen as quickly as I could. She informed me I turned a lovely shade of Smurf, and the next few minutes I recovered while we watched my PO2 slooowly climb back up to the 90’s.

Although I am a cardiac nurse, I didn’t have to be one to realize that the drop in my oxygen saturations wasn’t great. Had I not turned blue, I would have assumed the finger probe wasn’t accurate.  I was trying to recall if a drop like this had ever been an issue during previous stress tests, but I came up with nothing.

I met with my cardiologist a bit later, and she gave it to me straight forward. The dip in my oxygen levels is a completely new finding; she went back at looked at 5 years’ worth of stress tests, and the lowest my PO2 ever went to was 94%. The amount of aortic regurgitation has also increased since my last echo and my left ventricle looks slightly enlarged, but because of my breast implants the tech couldn’t get a great picture.

Long story short, instead of undergoing a few tests which probably won’t give us any real answers, I’m going to have a cardiac catheterization at CHOP, which is the gold standard for diagnosing heart problems. It’s invasive, and there’s a greater risk for infection because of the amount of immunosuppressants I’m taking, but the benefit obviously outweighs the risks.

So here I write, on a day I’m usually celebrating how far this ticker has come, scared that sooner rather than later I’ll be having open-heart surgery. Fucking figures, right? It’s like my heart is pissed that it’s been second fiddle to everything else over the past 7-8 years, that it’s causing trouble to get some attention. That needy little heart of mine.

Nothing is scheduled, and until then I’m trying to take it easy. No vigorous workouts at the gym, doctor’s orders. It seems like once one issue is put to rest, another pops up. So, I just ask that you keep me in your prayers, and send some happy heart thoughts my way!

Love you all <3

 

Comments

  1. Holli says:

    Oh sweet girl, you’ve never been removed from my prayer list. I have to tell you something kooky- this morning as I drove to work, you were on my heart and mind. Like heavy. I was thinking of texting you to check in. Now you posted this. I’m so glad to hear from you via post and know what’s going on. I miss your blog posts and your comments on mine.
    Sending tons of prayers and hugs from Texas girlie!! Love you.

    • luckfupus says:

      My sweet Holli girl! Every time I sit down to possibly read a blog post, I’m like ‘meh!’ Nothing personal at all, I just can’t get into the frame of mind I need to be. I don’t know how to explain. That doesn’t mean I’m not always thinking of my favorite Texas girl, and I’m happy I get to see all your antics with you, Todd, and the pups on FB and IG. And by the way, that is a bit creepy you were thinking of me and I posted. I would say full moon, but that was last week. Love you!!! <3 <3

  2. Dude. It is really, quite seriously, someone else’s turn.

  3. Kelli says:

    Ugh, this sucks and I’m sorry to hear it. I’m glad you’re taking it easy and I’m sending hugs your way.

    PS – Your bloglovin’ feed isn’t updating, I only know you posted today because I saw it in my Facebook feed.

  4. Tia G. says:

    I wish it was no one else’s turn. It just needs to be over. My heart hurts reading about your hurt heart. Every time I start to wonder what’s new with you, you blog, which is just wonderful, I just wish (like you) that one of these days your post just says, I’m cured…and then it’ll all just be over. You are a warrior. I’ve said it a million times and I’ll say it a million more.
    I just snicker to myself when people around me complain about their woes….because they don’t know ass-kickers like you, my dear. But don’t think that doesn’t stop me from plugging your blog all the time! Your voice needs to be heard by all!

  5. Nicole says:

    I second Steph, when the fuck is it going to be someone else’s turn? You’re always in my thoughts, but I’ll definitely amp up the positive vibes

  6. Jennie says:

    Good luck on Wednesday, I’m so sorry your ox saturation were so low you turned blue. I guess I made out lucky/unlucky my stress test was the nuclear kind ( I wish I gained super powers) and not the treadmill type so no breathing apparatus for me. I’ll be sending all my love and thoughts with you for Wednesday. Hope there’s minimal findings and a simple fix is the remedy. Xo

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