About Me

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I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Saturday, December 3, 2016

Surgeries, ICU, Ventilators, Vacations, Honeymoons, and More!

Wow... it's been a crazy little while since my last post. I apologize for that! I'm going to try to give y'all a review of each month since my last update.

June: I started pulmonary rehab in June. I completed about half my necessary sessions for transplant listing. I also got a new J-tube placed in June. My amazing foster mom flew down from Minnesota to be here with me for the surgery. My youngest (foster) brother, Ryan, graduated from high school! And my husband, Jeff, and I took a weekend trip to Wilmington as a Honeymoon type thing since we hadn't been able to take one when we got married in February.

My foster mom and baby sister <3
ICU on the Ventilator
Bipap
July: I got a Hickman line placed on July 1st for IV antibiotics at home. The next day we began to remove all the carpet from our house to install hardwood flooring. Of course, I made the awful mistake of insisting that I help with removal of the carpet and installing the new flooring, which caused my to go into such an intense coughing attack that I began to cough up liters of blood and when into respiratory distress. I ended up in the emergency department on bipap that evening and was transfused 2 units of blood because of the large amount I'd lost due to coughing. By the 3rd of July, I'd had an emergency embolization because I continued to have massive amounts of hemoptysis. Despite the emergency embolization, I ended up in ICU on ventilator because it was too dangerous to breathe on my own without risking basically drowning in the blood that was coming from my lungs. I spent my 24th birthday in the hospital, and my foster mom and sisters flew down from Minnesota again because my prognosis was unclear. It was a very scary time, and no one knew if I was going to make it out of the hospital through the front doors or in a body bag.
Bipap
By the end of July, I was able to improve my lung function enough to post pone transplant evaluation. We attribute this to replacing the carpet. Ever since we did that, I have not been back to the hospital for an admission! So there had to have been something about the carpet that was making me so sick.

August: August first, Jeff and I found out that I was pregnant with TWINS! Despite all of the stress of everything else that was going on at this time, I felt like it was a miracle and I was so excited! Unfortunately, that was short lived. At my OB appt on the 23rd, I found out there were no heartbeats. I had lost them both. :( Grandma and grandpa Goff had also left to go back home to Arizona in August as I no longer needed care givers at this time for transplant. My brother, Lucas, and a friend of his came down to visit for a few days in the later part of the month as well. I also had my first severe hypoglycemic episode that resulted in an emergency room visit. Thankfully, Jeff was home from work that morning because if he wouldn't have been, he'd probably have come home to dead wife. And my beautiful baby sister turned 15 on the 28th of August.

The beautiful bracelet Jeff bought me. <3
Jeff and I at one of the outlooks at Blue Ridge Parkway
September: My mother and father-in-law came to visit at the beginning of the month, and I was able to experience the adventure of ziplining with them. I LOVED it! We also took a trip to the Blue Ridge Parkway and spent the day driving down the scenic route and stopping at overlooks and trading posts. Jeffery bought me a beautiful bracelet at the trading post we stopped at. I was also blessed to have been able to meet my best friend and cyster, Kandice, for the first time and her hubby when they made a trip from Texas to come and see me!

October: Not a ton happened in October. Jeff and I went to the NC state fair for a demolition derby, which was definitely not as good as the derbies I've seen back home in MN. We also went to the Fear Factory and played zombie paintball for Halloween. That took quite a bit of convincing and a promise to go to Panera for dinner before we went in order to get me to agree to go. I also re-enrolled in school, and will graduate with my Associates degree in Accounting in February of 2017. And Jeff and I participated in early voting in NC for the presidential election.

Kevin, Kandice, Jeff, and me at the CF Concert at Gas Monkey
Jeff and I at the Gas Monkey CF Concert
November: I had my first appointment back at UNC at the beginning of November. Since I am no longer going through the transplant evaluation, I made the decision to transfer back to UNC. Jeff and I both went to our first presidential rally for Trump before Jeff left to go to Texas for 6 weeks to attend a course to earn his HVAC certification. I ended up tripping over Mator and hitting my face which caused me to fracture a facial bone under my eye. (That left a pretty large bruise on my face...) I began my second to last school session on the 13th. Jeff and I celebrated one year together the day I left for Dallas to spend Thanksgiving with him. I was able to see Kandice and Kevin again while I was visiting and the for of us all went to Gas Monkey Garage Live to see a Cystic Fibrosis concert. I mourned my beautiful grandmother, JoAnn, on the 20th she'd been gone for 4 years and on the 24th (Thanksgiving Day) she would have been 74 years old. While I was in Dallas, Jeff and I received a called that our place had been broken into. The thieves got away with several thousand dollars worth of Jeff's tools. :( And on the 28th, I went into UNC's VIR to get a new port placed and started on IV antibiotics at home.
My facial fracture bruise from Mator.

Over the last few days, I have been trying to get the house cleaned up and unpacked from my visit to Texas. My wonderful husband graduates from HVAC school in just 13 days, and will be back home to me in exactly 2 weeks! I am so excited for him to come home, but I am SO proud of him for taking this step to better our future opportunities together. He's done some hard work and I am so blessed to have him as my husband, best friend, and partner. <3

These last several months have been crazy, but I am so thankful to have Jeff by my side. He is an amazing man and husband. Also, I'd like to thank everyone who has been so supportive! It's hard being chronically ill. It's even harder when you are unsure of the future. And it would be near impossible to fight through all of this on my own.

Merry Christmas, and happy New Year! I hope 2017 is a great year for all!