About Me

My photo

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...
 

Friday, February 28, 2014

Absolutely Crazy, Wonderful, Terrifying, Scary Life

So, I was supposed to leave for North Carolina yesterday (Thursday) evening; however, due to the unexpected blood clot I formed in my left arm from the midline I had for my three weeks of IV antibiotics, I ended up going into the ER on Tuesday evening. Just a day after being discharged from the hospital. I wasn't going to go get checked out, but after having fevers above 101.8 for nearly 12 hours that wouldn't go down even with Tylenol, and after reaching a high fever of 103.6 I decided I'd better go in as I was also having pain in my left arm. I initially thought it might be an infection caused by the midline, but it turned out to be a massive and extensive DVT (clot) spanning from just above my elbow to the base of my neck. I am so thankful to my little brother, Ryan, who picked me up and brought me in. 

After determining the severity of the clot, the doctors decided I needed an immediate IV Heparin (blood thinner) drip continuously and they transferred me back down to the U of MN. 

At this point I was very worried that I wouldn't be able to make it down to my husband and baby Diesel, but my amazing doctors were able to get me out this morning with blood thinning shots that I take twice a day! 

So, the parents and older brother and I shipped off this morning and we are currently driving through Indiana, after 9.5 hours of driving! I am so proud of my handsome boy, Mator! He's doing so well. This is his first extended car ride. 

Thanks to y'all who've been keeping me in your prayers and thoughts! They so not go unappreciated! 

I'll update again once I get down to NC and get settled. 

Sunday, February 23, 2014

Home, MOVING, Health, and..... (wait for it....) PUPPIES!

Hey y'all! 

I just wanted to give a quick update. I have been in the hospital 18 days now. And I just have today left until I get outta here tomorrow!!! This will be my last hospitalization with the University of MN because, as I mentioned in my previous post, I will be moving to North Carolina to join my husband, Justin, who is stationed at the army base in Fort Bragg. 

I've still been running lower grade temperatures on and off, but the CF team doesn't seem too worried about it. I am FINALLY off the insulin drip and back on my insulin pump, which I am SO thrilled with! They no longer have to check my blood sugar every hour! (A huge PLUS in my mind!) 

Weight is still a huge issue. Yesterday, I was up four pounds from admission, but I some how managed to lose three between yesterday and today. Eating has been a challenge lately, even with the foods I enjoy, because I have been experiencing horrible nausea. I am currently on two different anti emetics to try and keep the nauseous, vomiting feelings at bay. 

I had PFTs on Thursday. They were the same as last week. I am not sure if they plan on repeating them before I am discharged tomorrow. I have been rather disappointed in my recent PFT numbers as my baseline has been slowly decreasing over the past six months to a year. I used to be able to reach the high 70s to low 80s a little over a year ago. Now I am lucky to hit mid 50s. I am hoping the move to North Carolina will be beneficial to my lung status. Since I will be so much closer to the ocean, the saltier air may help with clearing more mucus. 

Since I have been away from Justin, we have been using FaceTime a majority of the time to talk everyday, as well as text messaging and voice calls. I was on FaceTime with him when he told he had gotten me a wedding present... When I asked what it was, he put a PUPPY in front of the camera!
 I am so excited to get down to NC and meet my new baby boy! We agreed on the name Diesel. (Which my brother, Lucas, was pretty happy about.) He is a Staffordshire (Pitbull) with mixed bloodlines. He is the CUTEST little thing. And has been driving Justin nuts as he didn't realize all of the patience and work that goes into having a puppy. I told him it was good practice for having children in the future; he didn't find that too exciting. 

Mator will be glad to have a playmate when he gets down to NC, too! I think the two of them will be best friends. Even though we have another dog now, Mator will always be my baby! I have looked to him for comfort throughout some rough times and he has (and never will) fail me. They say dogs are woMANS' best friend... They couldn't be more right! Mator knows when I am sick, he knows when I'm upset, and he is there EVERY time giving love and showing affection. So much of my strength and drive and fight come from just having him and knowing he's there. 
Well, that's all for now... I'll update some more later on! I hope everyone has a wonderful day! <3 And thank you to everyone who's been so supportive!

Friday, February 14, 2014

Moving, Marriage, and the Last Two Months

Wow... over two months again since I've updated my blog page! I'm so sorry to all of you who continue to check for updates. Life has been BUSY, wonderful, incredible, AMAZING, and magical!

At the end of February/beginning of March, I will be moving to North Carolina. The reason for the move is mainly because... I GOT MARRIED; and my husband, Justin, is stationed at Ft. Bragg. I am so excited!

Justin and I were married on January 21st, 2014 by a JP in Cumberland County, NC while I was visiting. Due to his work schedule, we have not been able to take a honeymoon yet. We also didn't have a ceremony for the same reason. However; when he has enough time off we will be coming back to MN to have a ceremony with family and close friends.

I made it two months with no hospitalization! It may not sound like much, but for me this is a big accomplishment! My next goal is four months! I am currently admitted to the TCU, Transitional Care Unit, because I am not “sick” enough to need hospital level care, but because I have no means of doing IV antibiotics at home I am being cared for at TCU. 

I've been running fevers for the last couple weeks. Docs don’t really know why; however, they don’t seem too concerned as my lung function is improving. I've also been struggling with weight. Even being in the hospital, I continue to lose as I have no appetite and cannot handle more tube feeds. I do have a set discharge date of February 24. Then it’s time to go home and start packing!

Thank you to all of you who've continued to pray for me and send me well wishes! It means a lot more than you may think!

Have a wonderful Valentine's Day! <3