Thursday, November 28, 2013

Mona, My Worst Nightmare

Happy Thanksgiving! Today the thing I am most thankful for is Mona.

Two years ago, around this time of year, Mona almost died on me.

She was living in Milwaukee at the time, going to school at MATC for their culinary and baking program.

She was home on Thanksgiving break, she was up painting long after everyone had gone to bed, when her arm started to swell and turn blue. Once she started moving it around, thinking it was her tight sleeve, the swelling went down and her arm returned to her normal pale white.

She told us in the morning and declined to go to the Doctor, insisting again it was just her tight sleeve, and that if it happened again she would go in.

Thanksgiving came and went and back to Milwaukee she went.

One again, her arm grew large and went from white to a weird purple.

She was living with our grandmother, so G-ma ran her to the emergency room as quick as she could.

Upon arriving, the ER did an array of pokes and tests, all coming up with nothing.

They sent her on her way and told her to see a blood specialist next week.

Due to the long wait and insurance reasons, she came back home to see her pediatrician (yes she was just 18 and hadn't switched to an adult doctor whole family works for the hospital, so they didn't mind seeing her).

The Doctor told her to go directly to the ER do not pass GO!

She had a pulmonary embolism (blood clots in her lungs).

There were so many clots they couldn't even count them.

The overall mortality rate of massive PE approaches 60%, with most deaths occurring in the first 2 hours of presentation.1,2 It is second only to cardiac arrest as the leading cause of sudden death, and in autopsy studies, it has accounted for up to 80% of sudden deaths in the hospital setting.3

The hospital in Milwaukee wanted her to wait a week to see the blood specialist. She would have been dead by then. 

They started her on blood thinners and started running more tests to see what caused the clots. 

She hadn't had any injury or surgery, she wasn't pregnant or on birth control pills. Nothing that would normally cause a blood clot. The fact that it seemingly originated in her arm was also unusual. 

Test after test came back negative. They were even worried it could be something genetic for awhile (making me susceptible as well) 

She was in the hospital for almost a week because they couldn't get her blood levels to come down and her clots to start dissolving. 

She finally was able to leave the hospital with self injections and no answers. 

She didn't really find stabbing herself in the stomach with needles a pleasant experience. She would bleed and bruise and cry. 

The Doctors were ready to chalk it up to a freak accident, when it happened again.

After, thinking she was well enough to shovel some light snow, her arm started to swell and turn purple. 

Back to the doctor and more blood thinners. 

Moma Bear was not happy with the doctor's non answers and freak accident theories, so she took to the internet. 

After countless hours of digging through the internets massive archives. She found Paget-Schroetter Syndrome tied closely with Thoracic Outlet Syndrome

Weird thing is our family practice doctor had also been pouring over the internet and came to the same conclusion as Moma Bear. Moma should be a doctor. 

So, Paget-Schroetter Syndrome it was. 

What PPS basically means is was that her first rib was pushing on her veins every time she moved her arm and it severally cut off her blood flow, to the point of swelling, changing colors, and causing blot clots.
This is normally found in athletes, so Mona was super impressed with herself and said it's because she is too hard core of an athlete. 

We could debate how much of an athlete she is all day, but the first rib had to go. 

No doctor in our town had ever done the surgery before so we didn't have much confidence, especially since the doctor never wrote her appointment note and refused to contact us and let us know what was going on.

Moma found a doctor in Madison's Mayo Clinic who specialized in Thoracic Outlet first rib removal. 

After fighting with the insurance company for a few days, we got our approval and were off to Madison for the surgery. 

Here's a video of the surgery I watched before hand...NOT FOR THE SQUEAMISH!!

The thing that upset Mona most about the surgery was that they were going through her armpit. She was hoping for a cool scar on her chest that she could show off, but nobody really wants to look at your armpit.

She was feeling all cool and brave about it and even asked the doctor if she could get a piece of her rib to take home. He was super excited about it and said he would do his best. 

They explained all the risks and what could go wrong, but thankfully I slept through her surgery on a waiting room chair (my defense mechanism) and none of those happened to Mona while I was asleep. 

She pulled through like a champ. Except for the fact she found out she was allergic to almost all the pain meds. At least we don't have to worry about her becoming an addict ever. 

When the doctor brought us the piece of Mona's bone that she requested, she wanted nothing to do with it. Mentally it freaked her out. 

I thought it was super cool!

She posted some long heartfelt post on Facebook yesterday about how she was glad to be alive. You could tell she was looking at her posts from a few years ago because I got this message. 


Mona: "A couple hours ago, I let the love of my life walk away from em. And all I said was hello. then he left to make more deliveries. UPS GUY I LOVE YOU!"

Just found that status from 2 years ago


Luna: Haha I remember that

Mona: Luns. almost 2 years to date. (her being overly dramatic alluding to her blot clot) 

Luna: I'm sorry you're so torn up about losing the ups guy...I told you to  to order more packages. 

You never listen

Mona: ha, you know what I mean

Luna: I never saw him so I don't really know


Honestly I try not to think about her near death experience that much. 

Otherwise I find myself having nightmares about her dying and leaving me alone to be consoled by my accidental date, Charles.


Not like that happened last night or anything. 

Anyways, this time of year, Thanksgiving or not, always reminds me to be thankful for my lil sis and that she's still alive. 

I swear if she dies before me I will kill her! 

What are you most thankful for today?

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