Over and Over Again...

So the evening after I was discharged, I ended up back in the Emergency Room at UNC because I was vomiting blood and having severe abdominal pain. They admitted me and did a scope and monitored my blood counts. My hemoglobin is still lower, but stable and I am allowed to go home today. I have to get it checked later this week to be sure it doesn't drop anymore.

I am a little bit nervous about going home because the past few days, with the exception of today, I have been having episodes of extreme shortness of breath, coughing, high BP, and dropping O2 sats. I needed to be placed on 4 liters O2 for a few hours yesterday because my sats dropped into the 80s. Doctors are not sure why this happened, but said if it happens again at home, I am supposed to go to the Emergency Room.

I am starting Pulmonary Rehab 3 times a week to hopefully try and increase my endurance. Doctors don't expect me to increase my lung function because it looks like most of the damage done is permanent, but they said Pulm Rehab should help me do more with the lung function I do have.

Over the course of three weeks of IV antibiotics and aggressive airway clearance, I still was only able to improve my lung function by 2-3%. I am really upset by this. Over the past year and a half, I have lost over 50% of my lung function and I cannot keep up with my friends and family anymore. I would love to be able to take my dogs for a walk, to go walk around the mall, to keep up with everyone again. I am praying the the Pulmonary Rehab helps me to do this.

I just wanted to update real quick, but now I'm off to pack up so I can be picked up in an hour and a half! :)

I'm Winning, I'm ALWAYS Winning!

Hey everyone. Just wanted to give a quick update. I've been in the hospital for 16 days. I was admitted through ER when I came in with a bad cough, shortness of breath, low o2, high heart rate, and chest pain. Turns out I have double pneumonia and a lung infection. I have been receiving three IV antibiotics and two oral antibiotics; however my lung function has not improved since admission. My doctors are talking about switching my antibiotics around to see if that helps. I was on a telemetry monitor for almost a week as my heart rate was pretty high. I was on 3 liters of oxygen until yesterday. Since yesterday morning I have been off o2 completely. :) However, I am still coughing a lot and having shortness of breath. The pain has decreased, but my nausea is pretty bad now. We have come to the conclusion that I have nausea from the antibiotics. They are treating it with IV Phenergan every six hours which helps for a few hours. I am currently having issues with my Port. The doctors have ordered some TPA to try and unclog my line. Praying that it works! I've had no blood return for several days and over those days it has become harder and harder to push anything through the line. So, we will see in about 30 minutes if this works. FINGERS CROSSED!
This is the longest stay I have had in a long time. Usually I am feeling a lot better this far into a course of antibiotics. I am not ok with accepting this as my new norm. I am committed to getting my lung function back and getting in shape. I know it's going to be a hard and long road, but I am going to do it. I am not ready to give up yet!
And... between now and two minutes ago, my doctors came in... We've agree that I can go home with IV antibiotics! My day just went from ok to awesome in less than 60 seconds!
I want to thank everyone who has been keeping me in their thoughts and prayers. Your love and support means so much to me! I am so blessed and thankful to have so many amazing people in my life. I have never felt more comfort and support before. It is an incredible feeling and it makes things so much easier and gives me so much more strength to keep fighting.
I just feel so incredibly blessed to have the life I do. Yes, Cystic Fibrosis and diabetes can be a huge challenge and they set up so many obstacles, but without having CF, I would not be who I am. I would probably not be as strong. I would not have been lead to my incredible foster family. I would not have met the amazing cysters and fibros that I have. And I would most likely have taken so much more for granted. To be honest, if I had to choose between not having CF and losing all those people or being in the same place I am, I would choose this over and over again because my love for my second family and my friends that I've met because of this path I've walked is so much greater than the burden of Cystic Fibrosis.
I refuse to let CF or anything else get in my way of happiness. You've gotta learn to take the good with the bad and the happy with the sad. And I have learned to laugh through the pain and smile through the tears. CF will never win.

Life is Beautiful

Wow... time sure does fly! Its been a pretty amazing summer so far, other than spending a few weeks in the hospital for CF related things and a sad loss of my baby D.



Unfortunately, I lost my baby boy, Diesel to seizure several months ago... It was a very hard loss for myself as well as the rest of the family and Diesels brother, Mator. For days after Diesel was gone, Mator would search the house and stare out the window looking for his little brother. It was so heartbreaking to watch. Mator still perks up his ears whenever he hears D's name...

This last month after some of the hurt has faded, we made the choice to welcome a few new members to the family. We are now parents to a new puppy, Daisy. She is a beagle mix. And her sister, Nala, belongs to my mom. They are so fun, but I definitely forgot how much work having a new puppy is! They're about four months old now and have been doing quite well with potty training and are becoming masters at sitting and laying down. We are working on walking on a leash and introducing them to loud noises as both are terrified of the thunder when it storms.

We also adopted a Quaker Parrot named Pepper. Pepper came with a little parakeet friend named Monster. Since we've adopted them, we have been able to separate the two. We chose to do this because it was difficult to interact with either one when they were together. Monster (and his new girlfriend) is now being cared for by my brother, who LOVES them. Pepper  just a hoot to watch and interact with! She knows how to kiss and she can say hello, pretty bird, and Pepper and she LOVES to dance!

I celebrated my 23rd birthday on July 15th! I am so blessed to have the chance to say I've made it another year! I've beat CF and the overcome the blockades it's placed in my path. They said I'd never see 12, I did. They said I'd never see 16, I did. They said I'd never see 18, I did. Then they said I'd never see 21, but now I'm 23! I've made it so far and fought through so much and I will be here to see my 24th birthday, my 25th, my 30th, my 40th, and beyond! I have so much living left to do and I am going to do it!

I was also so blessed with the chance to visit with my sisters and foster mom. It had been nearly a year since I'd last seen them and despite having an EXTREMELY busy schedule, they were able to make some time to come down to North Carolina from Minnesota and spend a few days at the beach with me! It was a truly incredible time and one that I will for ever cherish and have memories of.

Sitting on the beach, splashing in the waves, digging sand castles, burying each other in the sand, seeing sharks just a few hundred feet from shore, seeing jelly fish swimming, watching pelicans dive for fish...
 

Taking tons of photos together, getting manicures and pedicures, walking the boardwalk, shopping, picking out sister bracelets, getting caught in a thunderstorm, going to see the Minion movie in 3D, going to the Aloha Safari Zoo and feeding the rescued animals! But the best part was just being near some of the most important people in my life. The only people missing from this incredible beach vacation were my brother, Ryan, and foster dad, Chad. Hopefully, I can make it up to Minnesota soon to see them too!

I guess that may be one thing I can thank Cystic Fibrosis for. I've learned to value the time I have with the ones I love because I will never know how much time I'm going to have with them. I've learned to not sweat the small stuff and to take life as it comes. Tomorrow will never be promised and yesterday will never come again. Laughter is one of the best medicines and there's no such thing as laughing too much!

I am still in school. I am currently attending Colorado Technical University online (CTU) for accounting, which I LOVE! Because it's online, I can still keep up with all my classes and homework when I am in the hospital (or at the beach :)) and the instructors are incredible! I have been able to maintain my 4.0 GPA and have tested out of several classes. 

Life is so great right now and I am so happy and so blessed to have the things and people I have in my life. God is so good and so kind to me. I will continue my prayers for all my friends and family who may be struggling with any type of hardship. I pray that God guides you and brings you the strength and courage you need to get through it.

I hope everyone has an incredible weekend! Much love until next time! 

PS. I will try to update again before another three to four months pass by!

Amber

"There are people in my life who I swear are angels who were born without wings."

Life Is Grand

Oh gosh... Its been awhile again! So much has happened since my last update.

December: I ended up going into my local ER in December with a 104.8 degree fever and 84% oxygen level. After drawing labs and blood cultures, giving me some O2 through a nasal cannula, and some pain and nausea medication, they sent me home with a 99.8 degree fever and O2 level of 89-91%. Several days later I received a call that my blood cultures came back positive for a fungal infection. After calling UNC, I was admitted to the hospital on a Saturday night through the ER. They determined the infection was caused from my Port-a-cath. Sunday morning they removed my port. I spent 2 weeks on an antifungal to kill the infection.
I was blessed to spend part of Christmas with my family as well as some really awesome friends.

January: January was a fairly quiet month. My brother, Lucas, went back home to Minnesota. 
I ended up back in the hospital at the end of January through the beginning of February with a CF exacerbation. 

February: Over Valentine's Day, I found out I was pregnant! Unfortunately, less than five days after this amazing news, I began to miscarry... This news was, and still is, devastating and painful. We've always wanted children and have been trying for a while, but we're not giving up hope. It's all in God's hands.
Dad ended up being taken to the hospital via ambulance for what we thought was a heart attack. He spent the night and was diagnosed with a chest infection and high cholesterol, but it's still a mystery as to what is wrong with his heart. He's slowly starting to get back to "normal."

March:My first nephew, Grady Theodore, was born March 13th at 2:52pm at the Buffalo Hospital in Buffalo, MN. Daddy is my brother, Lucas and momma is the beautiful miss Kristen. He weighed 7 pounds and 10 ounces, 20.5 inches long.

I was also in the hospital again. After waiting  for 7 hours in the ER waiting area, I was finally called back to an ER room. After waiting another 5 hours, I got a room in the hospital. I was sating 92% on 2 liters of O2, resting heart rate was above 140.  I was put on a combination of 3 IV antibiotics and an extra oral antibiotic on top of my maintenance antibiotic and my inhaled antibiotics. I spent a little time in an ICU stepdown and was discharged after 2 weeks.

April: So far, April has been a good month. This past weekend was spent at Holden Beach with some friends. It was amazing! We saw some dolphins feasting on a school of fish, I got a little burnt, and the boys went fishing. This last Tuesday, the 14th, I ventured out of North Carolina to visit some friends in Michigan. I will be here until later next week. 

I hope to update more often. I know I say that quite often, but I do intend to be better! Talk soon!