Luck Fupus

A lupus blog…

“Leaving on a jet plane…”

I’ve completely fallen of the blogging bandwagon.  It’s been a rough week and a half, and even though I knew it would be good to get my frustrations out, I just couldn’t muster up the energy to sit and write.

As we speak (er… write) I’m on a plane on my way to San Francisco for a much overdue 4 year anniversary vacation with the Hubby.  We are spending 2 days/nights in San Francisco, then headed to Sonoma for three blissful days of relaxation and wine.  In that order.  Although around 1 am, we almost cancelled the trip, I’m glad we are here! I can feel like shit at home, or I can feel like shit in a hot tub, on the deck in our room in Sonoma overlooking the wineries.  No. Brainer.

This past Monday I had a pretty crazy health scare while at work.  My legs had been hurting all day, but I attributed that to it being my third 12 hour shift in a row.  I got real tight in the chest, my heart started pounding and my legs began to throb.  Usually I just brush off symptoms like that off (I know, I know, not good) but there was no denying that something just wasn’t right.  I guess I got a panicked look on my face because one of my coworkers took notice and asked if I was alright.  I kinda shook my head no, sat in a chair and pulled up my scrub pants.  My skinny toothpick legs were bright red and swollen like tree trunks all the way up to my groin.  My ankles were so puffy they were spilling over the sides of my clogs.  I was not prepared for that. Thoughts of blood clots, heart failure and kidney failure raced through my mind. 

I really don’t remember much, I got very confused, shakey (fight-or-flight!) and wasn’t making sense to my coworkers.  Somehow I got my cardiologist on the phone, but I cant recall any of that 5 minute conversation.  Next thing I knew, I was surrounded by the Cardiac ICU team (pretty convenient to work there if you have a heart defect) and they were poking, prodding and listening.  I was mortified… I was taking care of the sickest patient on the unit and the team was surrounding me… yikes. I was taken down to the ER,  (Hubby met me down there. I dont even remember calling him!) and then transferred over to the adult hospital next door.

I’ve never had great experiences in this particular ER, mainly because whenever they hear I was born with a heart defect, they want nothing to do with me.  It’s frustrating.  I go there for adult problems, yet they don’t want to touch me.  I guess word got out that a 30 year old with tetralogy of Fallot AND Systemic Lupus was in room 9, because soon I was the subject of a riveting game of “Mystery Diagnosis- Heart Murmur Addition” for 5 med students, and by the time they were finished, I was at my wits end.  I’m usually not bothered by med students as EVERY time I’m seen in an ER, they use me as a learning tool (hey, everyone has to learn) but on this day, I was not in the mood.  

By the time I saw a doctor, a lot of the swelling in  my legs went down, and it was all a mystery.  I’m certain he didn’t believe just how swollen I had been only 2 hours before.  Usually I’m SO good about taking pictures with flares like these, but I was so worked up and scared that I forgot. Fail.

I got a ton of IV fluids to bring down my heart rate, an X-ray, EKG, lab work, and it all came back negative.  Which usually, is a good thing.  But what in the hell caused my body to do that and in an alarmingly short period of time?!?! I’m always on my feet at work, and this has NEVER happened.  The doctor could sense I was not happy, so he said if I wanted to, he would admit me. Oh. Hell. No.  If I’m gonna die, I want to do it at home, in my own bed with Hubby & Princess Matzo Ball.  After 5+ hours in the ER, I finally got to go home, without any explanation of what just occurred.  

The next day, I was back at my happy, smiley pediatric hospital for some cardiac tests and to see my cardiologist.  As someone who was practically born and raised in this hospital, the familiarity of it just brings me at ease.  I can’t explain it, but everywhere else makes me feel Defcon 5.  Brie came with me because I was too shakey to drive, and after an EKG and an Echo, I saw my cardiologist,  Dr. D.  He was actually at a loss of why that occurred.  My heart function looked good, and the aortic regurgitation I’ve been having due to lupus looks exactly the same from my previous echo.  His only rationale is that my leaky little heart valves didn’t appreciate the 10 extra pounds of fluid on board from the high dose of Prednsione I’ve been on, so they backed up.  It makes sense,  but I will say that it’s a bit bothersome since I’ve been on much higher doses of Prednisone and this has never happened before.  He called in Lasix to my pharmacy, should this happen again.  I haven’t been on Lasix since I was 6 before my last open-heart surgery! Open the flood gates!

 Dr. D. spent well over an hour with us, he’s such a great physician.  He put me at ease, and I trust him enough that if something were truly wrong, he would be addressing the problem.  He even spent some time talking to Brie and I about the possibility of the Familial Hyperlipidemia gene, and pressed Brie to get her cholesterol checked.  Since I’m pretty sure our family was the driving force behind Lipitor, I wouldn’t be at all shocked if we carried the gene.  

I haven’t felt good since last Monday when that happened.  Ok, who am I kidding, I haven’t felt good in a loooong time.  It’s so discouraging, as I just seem to be getting worse.  Even the Hubby has noted a big decline in my overall health and well-being.  I’m losing my spunk. He’s definitely talking to me about it so much more than in the past, which is a big relief.  Sometimes I wondered if he would ever really acknowledge what is going on, or if he just put up his blinders so he can pretend nothing has changed.  But the past few months, Hubby has been much more attentive and aware of the situation.  It really does help, and I feel like its brought us closer together.

It was good to get this all out.  We are about 40 minutes for touching down in San Francisco, anxiously wondering the score of the Flyers game!  I’m hoping that I feel well enough to enjoy our time away. Not sure if I will blog before we get back, but anyone who reads this, have a great week! I’m off to see the Golden Gate Bridge, the Full House house, Alcatraz, and drink some vino!


  1. Shelly says:

    So glad Brie was able to go with and support you! I hope you have a wonderfully relaxing vacation and that you get some answers soon! Praying for you Marla!

  2. MarlaJan says:

    Thank you so much Michelle, prayers and support are much appreciated! Having a great time on vacay!

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