Thursday, March 12, 2015

I am having trouble sleeping tonight. So much stress and anxiety about my upcoming surgery making me so sick tonight. It's a worry I have before all my surgeries....what if I don't wake up?? I'm told I shouldn't worry but I truly cannot stop. Thanks for everyone for donating. If you can't donate please share my story. Send me sleepy thoughts as well.

Monday, March 9, 2015

An Update

Hi Friends and Family!

It's been awhile since I wrote on my dear ol' blog, but some new medical problems have come up again and I want to tell you all what's new.

As some as you know, I was diagnosed with avascular necrosis (AVN) in January 2013. This terrible diagnosis is due to the fact that I was on an extended treatment of high-dose steroids after my brain tumor and staph infection that followed.

I started having terrible hip pain in July of 2012. I thought it was because I started to be more active and figured it was a pulled muscle or pinched nerve. I had an MRI arthrogram and was told I had AVN. I found a great orthopedic surgeon and he recommended that I have a surgery called core decompression of the femoral head. 

Core decompression of the hip is usually employed before collapse and fracture of the femoral head to delay or avoid reconstructive surgery of the affected joint. It is generally carried out to preserve the function and the structure of the hip, as well as to relieve pain associated with AVN. 

So the surgery was not entirely successful. (In hindsight, it was a complete failure). I was still in a lot of pain most of the time, but I was told I could wait until I was 40 to have a total hip replacement. Fast forward two years and the pain in my hip is downright excruciating. I got another MRI arthrogram and the results were not good, my hip had rapidly deteriorated and was near collapse. A total hip replacement, the three surgeons have told me, is now the only answer.

I have a great job at a local pharmacy. I work 4 10- 11-hour shifts a week. It's not easy to be on my feet all day but this job is amazing. It's fun and challenging and exactly what I love to do. I have only been working there for seven months so I do not qualify for FMLA or paid time off. 

I need approximately 10 weeks off to recuperate and get strong. I have insurance but that will only cover part of the actual surgery, because once I stop working, I only have a couple of weeks of coverage before I'm dropped from the plan. Then I'm out of luck. I hope the Affordable Healthcare Act will help fill in the gaps until I can return to work, but the co-pays, followups, prescriptions, medical equipment (walker, crutches, etc.) and mostly sudden lack of income are what have really been keeping me up at night.

As some of you might know, my past medical complications makes this surgery not only scary and dangerous, but also more expensive than for most. Since I have Acute Respiratory Distress Syndrome (ARDS), I've had to see my pulmonologist to get cleared for surgery, and will have to pay for her services while in the hospital. I'm also likely to stay in the hospital for much longer than others, who could possibly go home the very next day.

Every doctor bill is going add up to quite a lot of money. We will be living off of Bryon's income for that time. And while he loves his job, newspapers don't pay like Wall Street does. 

I have had experience with huge hospital bills with my brain tumor and staph infection and as a result had to file for medical bankruptcy several years ago. I was young and single and didn't have health insurance. I didn't have much options because I needed emergency surgery to remove the tumor. I don't want to have to go down that road again. 

I am hoping to get a little help from my friends. In addition to drastically cutting expenses and using what little we've been able to save over the past couple of months, I am starting a Go Fund Me account in hopes of paying all the upcoming bills, as well as all the bills from multiple MRI's, doctors visits and medication that I have incurred in the last few months getting ready for my hip surgery. I know this is asking a lot. I know I have amazing friends and family and I know that the kindness of strangers can change the world. 

Today I had an MRI of my shoulder because I had surgery to repair slap tears two years ago, (believed to be related to nerve damage after falling from tumor-related incident) and I think I have re-injured my shoulder.) It hurts a lot. As I lied in the coffin that is an MRI machine, I struggled and cried and they were finally able to coax me in. My mind wandered and I started feeling really bad for myself.

I cried for myself, for my husband, for my family. I have been a difficult patient at times. I thought about what I had missed out of because of all this crap. All the times I couldn't get out of bed, couldn't be released from the hospital even though my boyfriend (now husband) Bryon had 2nd row tickets to our favorite band Pearl Jam. He even organized a fundraiser for the Wishlist Foundation and raised more than $1,600 to donate to charities the band supports. 

I thought about the baby I will probably never have and the sacrifices Bryon has had to make.I know this is my trial in life. I believe in science and I believe in luck. I have not been lucky, but science has saved my life. If it weren't for the hardworking doctors, nurses and staff at Intermountain Medical Center, I wouldn't be here. If Bryon hadn't carried me to the ER on Sept. 15, 2009 — I would have died.

This time around, I just hope there are no complications and I can spend my recovery time without too much pain.