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...

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
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.
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!

Saturday, May 28, 2016

God Has My Back...

If there was one word I could use to describe my day this past Thursday, I think it would have to be emotional. I'd been home from CF clinic since about noon, and had sat down several times to post an update on how the appointment went, but each time I've found myself typing out what I thought I wanted to say, I would stop and delete it all. I just could not find the right words to describe how I felt and what occurred at clinic. Finally, close to 10 hours later, I was able to sit down and write the this on my Facebook status:
The first blow I received this morning came when I stepped on to the scale at the office. Since I began this whole transplant journey, I've never been talked to about my weight being a factor that could set being listed even further out of reach, but today I was told that I've been on a downhill slope with my weight over the past few months. Now I am required to gain back those 10 pounds I've lost since January before I can be listed... I do have a GJ tube for tube feedings; however, due to issues with not having an insulin pump going on almost 6 month, tube feeds have been extremely hard to regulate my blood sugars with. Despite knowing my sugars will spike into the 600s and higher, my team has decided I should be doing them anyway. So tonight I begin tube feeds again for the first time in months. 
The second hit came with PFTs. I lost another 2% of lung function since my last visit. To a lot of people 2% my seem so small, but when your "normal" lung function is only 16%, you don't really have anymore room to drop. Seeming the number 14% on the computer screen brought me to my knees. It took all I had to keep the tears from flowing... When you know your life comes down to a dollar sign, its difficult to hold it together most of the time, and then seeing what already little function my lungs have left drop even more just brings back the harsh reality I live with everyday: that my life seems to be ending faster than I can fight to save it.
The third, and final, upsetting piece to my day was when I was asked if I'd consider "other options." I have been very vocal since transplant was first brought up that I wanted to be considered and transplanted, if I am a good candidate. I feel like a lot of people view transplant as a "way to save my life" or a "way to prolong death," but I want to be very clear. I do not want this surgery to simply "not die." I want this because I want to LIVE! I want to be here to experience new things, to make more memories, to have babies with my husband, to travel. I don't want to just exist. I don't want to be tethered by oxygen tubes, feeding tubes, IV tubes. This transplant is the only way that can happen...
I drove home after clinic with a pretty low mood... I spent much of the early afternoon like that as well. Then about 4:30, my cell phone rang. It was a call that would literally bring me to the floor and I damn well let the water works go...
Earlier last week I received information about a fund set up to help transplant patients in need with raising the money required for transplant. Ellie's Fund. At first, I was fairly reserved, and didn't allow myself to get too excited or hopeful about it because I didn't want to get let down and have my hopes shattered if it fell through. 
I contacted the doctor (Dr. Reynolds) in charge of the fund last week, and hadn't heard back since our first email exchange. So when the phone rang, I wasn't thinking it could possibly be Dr. Reynolds. I answered the phone and Dr. Reynolds introduced himself and explained that he was calling because of my request for help. Within the first moments of the call, my heart was pounding... When he told me that I'd be a perfect candidate for Ellie's Fund, I nearly dropped the phone! He proceeded to tell me that he was going to begin the necessary financial paperwork to get things started to ensure I would have the required money I need to be listed once I finish my 23 sessions of pulmonary rehab, get my weight up and show I can maintain it, and anything else that I may need to do to qualify for listing. 
I am beyond thankful and so blessed! I am still going to continue fundraising through COTA to try and raise as much as I can so I don't need to use as much of the fund, but knowing the money is there when I need it has put my mind at rest. It has eliminated mountains of stress, not only for me, but for my husband and our family and friends as well! Please continue to share and donate, if you can! The more I raise, the less I need from Ellie's Fund, and that means there's more for other people in similar situations!

Thursday, April 28, 2016

Memories Make a Difference

I've always been a memory hoarder. My mind is full of memories that I cherish beyond measure. Most of the memories that I hold so close and near to the front of my mind are ones of moments I've shared with my brothers, sisters, and parents.

I remember many evenings spent with my little brother, Ryan, and my baby sister, Kassy. Ryan and I would pick Kassy up and spin her around in circles as fast and as long as we could stand and then put her on the floor and watch her try and walk as she weaved back and forth across the carpet in the livingroom, falling down every second step. Ryan and I would laugh until we cried watching her. And Kassy would laugh too just because Ryan and I were laughing. She probably had no idea what we thought was so humorous then, but she laughed anyway. Other times, Ryan and I would pretend to take Kassy's nose, or her arm, or legs, or eyes. She'd ask for them back because she really thought we'd taken them from her. Sometimes we'd give whatever we "took" back to her, other times we'd put it on our own bodies and tell her she couldn't have it back. This usually made her cry and frantically try to to take whatever we had taken from her back. These moments were probably worthy of being on America's Funniest Home Videos, but we never got it on tape.
My baby sisters and I at Ryan's last ever
high school football game!

My foster mom, Jen, and I at the 2010 Mpls Great Strides Walk
I have so many memories of my baby sisters coming with my foster mom to visit me at the hospital. We'd spend hours coloring, and laughing, and watching movies together while my foster mom sat on the side and watched or tried to read. (I can't imagine she got much reading accomplished thought between the four of us telling her to look at the pictures we drew or colored or the incredible amounts of loud laughter the resonated throughout the hospital room.) We'd go out of the hospital on day passes between treatments and meds to explore parts of Minneapolis. I especially remember our trips to Fat Lorenzo's Pizza near the airport. We'd get pizza and gelato and walk around the trails that bordered Lake Nokomis. One time I was okayed to go out on an evening pass and we were trying to find a certain destination (I forget where), but ended up at a huge cemetery with beautiful statues and massive, yet gorgeous trees. I remember the sun shining through the mature branches and fall colored leaves. Ryan, Jennifer, and I walked around the cemetery that evening, instead of turning back to find our original destination.

My foster dad, Chad, and I at my graduation party.
I remember taking many family trips with my foster family. One trip we made was up to Lutsen/Duluth area in northern Minnesota. I don't remember the name of the park we were at but we'd hiked at least a good couple miles until we reached the river. We were all having a great time splashing around and playing in the water when my blood sugar decided to tank. All we had by that time was water because we'd eaten our snacks when we stopped to play. We packed up as quickly as we could and started making our way back to the truck. We were taking it slow so I wouldn't be exerting so much energy, which would have caused my blood sugar to drop faster. Chad, my foster dad, and Ryan decided they needed to run back to the car and bring me something to eat because I wasn't going to make it back without something to eat. My foster mom, Jennifer, and my 3 sisters stayed back with me, and we slowly continued to walk back. We passed one family on the trail back to the truck. All they had was some really gross chocolate covered wafers, that I really had to force myself to eat and not choke back up. Looking back, I am so grateful for those disgusting chocolate cover cardboard things. I probably wouldn't have made it out the park without them.

Lucas and me <3
I have some pretty incredible memories with my bio family as well. Like when we all got to go to Florida to Disney World through Make-A-Wish. It was our very first family vacation. We went to South Dakota a few years later together. And then to Texas a few years after that. Those are all wonderful memories, but I think my favorite memories with them are just our family game nights, especially ones with my brother Lucas. If you are ever looking for a belly from laughing, Lucas is the person to be around.

I have so many happy memories stored in my brain, but there are also some very unhappy memories I have filled away as well. Even in the midst of those hard times, there are some pretty amazing memories thrown into those unhappy ones. The happy memories from those times are probably the only reasons I was able to make it through.

My brothers, Nick & Lucas, and my dad, Jim,
and mom, Johnna, and myself
Lately I've been struggling with the possibly of not being able to make many more memories with the people I love so dearly. It scares me tremendously.  I constantly wonder if I'll get a chance to see my brothers and sisters and foster parents again. That's the hardest part about living over 1300 miles away from each other. It can be difficult to see each other as often as I'd like. It makes it even more difficult when I'm having to fight every single day to get a second chance at life.

For me, the hardest thing about transplant is not raising the thousands of dollars it takes to be listed, it's knowing someone else has to pass away for me to live. It's also the most motivating. Knowing that someone made the decision to give life once their's was over makes me fight so much harder for a second chance at life. I refuse to give up. And I refuse to go down without a fight, and if I have to go down, I'll be swinging and landing punches the entire way. They always say your outlook is half the battle. Well my outlook is positive and my will power is strong. So I've already won half the war.
My baby sisters and foster mom, Jen when they came to visit
me when I was stuck at Duke! <3

Here I am saying BRING IT ON! I've lived through 100% of life so far, I think the odds are in my favor.

*** As many of you may know, in order for me to get listed for this life-saving transplant that I very desperately need, I have to raise at LEAST $15,000; however the goal is $40,000 set up by COTA (Children's Organ Transplant Association) to be sure I will have the financial stability I need to make it through the most critical months after transplant. I fully understand that many of you may be financially tight at the moment, but if you could spare even a few dollars, I'd be forever grateful! No amount is too small, I promise! So, if you can afford to give even a dollar, please do! Help me get my second chance at life and the ability to experience what its like to breathe easy. You can donate through COTA in honor of me. Your contributions are tax deductible to the fullest extent allowed by law. And 100% of your donation goes to helping with transplant expenses. Please consider!

COTA Fundraising Donation Page - Click the link to be redirected to the donation page :)

Wednesday, March 30, 2016

This Beautiful Hell I Live In

So much has changed over the last few months and since my last post! Jeff and I got married!  No, I had not been divorced long before I remarried, and no, Jeff and I haven't been together for a long time. HOWEVER, let me tell you something about Jeff. He has done more for me (and my family) over the shorter period of time we have been together than anyone else I have ever been in a relationship with, including my ex-husband. Jeff has already spent more days and nights in the hospital with me since we've been together than other person I know, including my ex-husband (with the exception of my foster mom). He has learned more about Cystic Fibrosis, diabetes, my treatments, and my medications than anyone else I've ever been with as well. He reminds me
regularly that I'm strong enough to fight this and that I am strong enough to make it through the possibility of transplant. He comforts me and reminds me I am worth everything to him when I feel worthless because I can't do everything I feel like I should do or want to do because my disease has progressed to the point of needing transplant. Jeff has already shown me that I can count on him to be there no matter what, and so has his family. And the most important thing is that I KNOW he loves me, and I love him too. He makes me smile and laugh at least 20 times every single day and he makes me happier than I have ever felt with another person and he knows how to say he's sorry. And THAT is ALL that matters.
 So despite what outsiders may think, we have the most amazing relationship, and it is one that will most definitely last.

My newest central line
I have finally gone through the lung transplant evaluation process at Duke. The only things holding me back from being listed right now are $15,000 and 23 sessions of pulmonary rehab with my caregiver. The $15,000 is needed to be raised BEFORE I can be listed to ensure my caregiver and I will be financially ok during and after the transplant itself. We are required to relocate to Durham to be within 20 minutes of the transplant center. There is also the 23 sessions of rehab that need to be done before being listed to help build up enough strength to make it through the surgery and to help ease the recovery process. I have to be listed in my "window for transplant," before I get "too sick." I am currently in my window, according to my transplant team. The only thing holding me back is that 15k.
Home IV antibiotics
I have also been in and out of the hospital several times since my last post. Most recently discharged this past Thursday. I am continuing for the next two weeks with IV antibiotics at home. It seems I have been in the hospital more than I've been home the past few months. I've struggled a lot with fevers and low o2 levels despite being on oxygen all the time. Over the past few months I have gone from needing 2-3 liters with
activity to needing 5-6 liters all the time. 
Overall, I'm just exhausted all the time.  Somedays, just getting out of bed is a chore, but I have to because I refuse to give up and I will NOT quit. My days are filled with medications, breathing
treatments, oxygen, insulin, blood sugar checks, tube feeds, doctor appointments, nursing visits and my regular, non-medical daily chores. I don't have much time, or energy, for anything extra anymore. No trips to the mall. No parties. No outings. No BBQs. Nothing.

It's so hard adjusting to life needing transplant. I've never been someone to really ask for help, but since I have had such a drastic decline in my health I've had to swallow my pride on many occasions and ask people to assist me in some of the simplest things. I used to be able to just force myself to do these things despite knowing I may be pushing my body a bit too hard, but now I am positive that if I don't ask for help I will be too exhausted from simple tasks to last the rest of the day. Trying to function with a lung function less than 16% is physically and mentally draining... 
My health definitely plays into my mood and how I deal with the day. Most days, I don't even think about the possibility of not raising the money for this
Tank was my Christmas present from Jeff <3
transplant on time. Most days, I am upbeat and positive and know that I will make it. I have my faith and a close personal relationship with God, my savior, to thank for that. On days where I may have a rougher time, I usually have the mental/emotional strength to battle the negative/"what if" thoughts that may surface head on. Rarely, I have days where I don't have the mental ability to overcome the fear of not being able to raise the money for transplant before my "window" closes or the fear of just not getting lungs in time.

I don't really know how many people read my blog, but if you do, and you can afford to donate to my transplant fund, you would be helping to give me a fighting second chance at life, my family and I would be forever grateful! Every little bit helps, even just a few dollars! It all adds up! I have a gofundme, a giveforward, and a tee shirt fundraiser. I will link them below. Again, if you can help with even just a few dollars, it would be AMAZING!
Gofundme: https://www.gofundme.com/3769gctw
Giveforward: https://pages.giveforward.com/medical/page-k7hbxk2/?utm_source=giveforward&utm_medium=share&utm_campaign=dashboard&shareid=3474905
Bonfirefunds (tee-shirt fundraiser): https://www.bonfirefunds.com/ambers-lung-transplant-fund 

Lucas, my brother, myself, and the other Lucas
Ry's football cheer section.
I was so blessed to have been able to go back home to Minne-sota for a visit in October. I saw my wonderful foster family and some great friends over the week and a half I was there. I got to go to my little brother, Ryan's, last high school football game! He's a senior this year! 

I was also so thankful to have met Ducky Kate IN PERSON in January when she came to North Carolina for a visit! Even though I was in the hospital, she came and spent the whole day making me laugh and talking and taking pictures. 

"I've been fighting to survive since the day I was born. I'm not a survivor, I am an absolute warrior."

Thursday, January 14, 2016

I'm New to Duke Blue

This post is a bit late... Opps...
September 3, I had my first Cystic Fibrosis appointment at Duke University. It really opened my eyes to the true severity of my current health state. I guess I have been aware of what's been going on, I just chose to ignore it until recently. Dr. Gray is my new pulmonologist at Duke. She's great! I also met with the dietician, the CF nurse, the social worker, and several other people that are a part of the CF team. I spent over 5 hours doing tests, getting labs and xrays, and meeting with everyone. I have never had an experience that I felt so welcomed and informed and cared about when it comes to doctors appointments.
Dr. Gray let me know that she thought I needed to have antibiotics, but let the decision be mine. I requested oral antibiotics for a week and four treatments a day to see if I could get over the hump. She agreed.
September 6, I ended up in Duke's emergency room for the first time due to low O2, difficulty breathing, and chest pain. It was a few hours wait due to several traumas that were brought in; however, it was MUCH better than previous wait times (12+ hours) at UNC. I was admitted and in a room within an hour of being brought back into an ER room.
After getting cultures back, it was determined that the only antibiotic that my bugs were susceptible to was one that I am anaphylactically allergic to. Zosyn. I had to be desensitized from the Zosyn by being given small doses of it every half an hour for 13 doses until I reached the goal dose; however, if I were to react to the drug, I would have to begin the process over again. A 6 hour desensitization turned into a 19 hour long process. I tolerated the first dose fine, but several minutes into the second dose I had a reaction that required a shot of epi and a dose of benadryl. Let me say, epi HURTS! Several hours later I had a second reaction and had to start the desensitization process over one more time.
Throughout the month stay, I struggled horribly with severe itching with each dose of Zosyn as they would run it over 4 hours. They decided to run it over a half an hour and pre-med me with benadryl each time and I tolerated that well.
Since September, I have been admitted to Duke four more times for CF exacerbations, a fungal infection in my port-a-cath, and for massive hemoptysis that required two bronchial artery embolizations.

In November, I met an amazing man who has become a huge part of my life. Since we first met, he has been incredibly supportive and eager to learn everything there is to know about CF and is constantly asking what he can do to help with my medical needs. I have never met someone so amazing.
I am so happy to be just one week away from being officially divorced from Justin, so I can begin a new relationship with Jeff.

Today was my first CF clinic appointment since my last hospital stay. My lung function has really taken a hit over the last year. My FEV1 was 16% today which is down from 22% at my last appointment. My weight was also down and I am requiring much more oxygen. My doctor mentioned she was quite concerned about my heart rate as it was extremely high. I am being admitted tonight and will be desensitized from Zosyn and Vancomycin. Tomorrow I will have a Hickman line placed to administer my IV antibiotics for the three week course of therapy. My doctor is going to try to have me evaluated for a double lung transplant while I am inpatient this time around. Hopefully, I can get listed soon. I am more than ready to be able to breathe!

I will update more as I find out!