Monday, June 24, 2019

The Struggles of Waiting for THE Call

It's been 124 days since I was listed. At first, I was able to not think about it every single time the phone would ring. About a month into waiting, that started to change. I'd hear my phone ringing and jump to see who was on the caller ID, only to disappoint myself when it wasn't my hospital calling, and even more anxiety when a Grand Rapids/Spectrum Health number would roll across the screen, followed by disappointment when it wouldn't be someone on the other end calling to tell me they had lungs...
Waiting is definitely difficult at times, maybe even more so than the evaluation process (I'm not fully decided on that part yet). I go through phases of thinking about what the future holds after I get new lungs and I am recovered and able to enjoy life on my own terms, and then there are times I think "wow, I've never been in a place where I've really been able to seriously think about and believe that I'd have a chance at a real future," and that in itself is difficult to process. And also the thoughts of "what if lungs never come?" or "what if I never get that call before I'm "too sick"?" It's a big roller coaster of emotions and wondering and questioning. To be completely frank, sometimes it's downright terrifying to think about the different outcomes.

Lately, I've been stuck in the mindset that I don't know if lungs will ever come. My heart has stopped jumping every time the phone rings. I'm not wondering what it might feel like to take that first breath with shiney, new-to-me, lungs anymore. I'm just living in the moment, which if I'm honest with myself and everyone else, isn't at all exciting. Don't get me wrong. I'm not depressed or sad. I'm just in the "here and now" and going through life thankful for what I have currently. And that could all change tomorrow; I don't know.
Physically, I'm hanging in there. I'm keeping up with rehab at home since I graduated from pulmonary rehab a couple months ago. Treadmill and weight exercises at least every other day. A lot of days I really have to force myself to do it. It's exhausting. And even though my incredible hubby has picked up most of the slack (household chores) on top of what he normally does, I am still struggling to keep up with the few things I'm responsible for doing. Thankfully, my mother-in-law has been sweet enough to come over and help me out with some of it. I know she'd come over a lot more, if I asked her to, too, but it's so hard asking for help already. I know everyone probably gets tired of telling me to ask for help when I need it and that they don't mind, and I know that's true because I'm the same way, but being the one needing the help is difficult. So please, be patient with me.

Lately, I've really been struggling with being able to sleep much because I can't breathe when I lay down, which adds to my exhaustion. Overall, my lungs are just tired. That's the only way I can think to explain how this feels. I constantly have to think about my breathing, and sometimes, it almost feels as though I am forcing myself to continue to take each breath. I know my fur babies can sense that I'm feeling worse, as well. They've always been momma's boys, but especially so as of the past several months. Every time I get up to do anything, they're right there. They follow me everywhere. If I go to bed before Jeff, they come to bed with me. If I stay up later than him, they stay in the living room with me too. They're just always making sure their momma is ok. And that's just one of the MANY reasons why I love them so much! Sometimes, they're the only reasons I get up in the morning and push through the day.

This past weekend was the annual Great Strides CF Walk in Mishawaka, IN. I was blessed enough to have my mother and father-in-law, and a couple wonderful ladies from our American Legion post and their kiddos/grandkids come to the walk! I also ran into a few other CFers who I've been friends with on social media. So it was cool to see them too! Our walk alone (for those who aren't familiar with Great Strides, there are multiple locations across the country- several in Indiana alone) raised over $56,000.00 dollars for the Cystic Fibrosis Foundation (CFF) towards research for new and better drugs to treat the disease and ultimately for a cure! CF does not receive government funding for research, the way something like cancer or diabetes do. So most all of the money used for research/drug development comes from fundraising through events such as Great Strides and other CFF events. There are several other organizations out there who also do fundraising for CF, but the CFF is the main one.
Since my last post, I was admitted to the hospital. April 22nd, I had an appointment with the transplant team. Before I even spoke a word to Dr. Girgis when he entered the exam room, he said, "I can already tell you need to be in the hospital." And I did need to be admitted. My "normal" breathing is already pretty labored and I always have a chronic cough, but that day (and for several weeks prior) it was definitely worse. So much so that he didn't even want to me return home to pack a bag. I did convince him to allow me to though. I had to say goodbye to my fur babies before I spent days to weeks away from them and my husband always seems to "forget" some of the things I ask him to bring for me when he packs my bags. I don't pack lightly, and he doesn't care for it. Lol. So I was admitted April 23rd, for what we thought would be a routine stay. Unfortunately, it did not go according to plan. I ended up in ICU for a short time while there after having a pretty bad episode of hemoptysis. I had a pretty bad couple days of severe anxiety with that because it took me right back to July 2016 when I had a major episode of hemoptysis and landed myself in ICU on a ventilator/life support. Shortly after that we found out that I had a fungal infection in my blood and because fungus
likes to stick to the plastic catheters they use to make ports and central lines, I had to have my port removed, which meant essentially no IV access. We managed to get a couple days more of antibiotics through peripheral IVs, but that was short lived and we ended up having to cut my round of antibiotics short by a few days. I finished my course of antifungal treatment orally and was able to go home on May 9th. My amazing foster mom, Jennifer, was able to fly out for several days while I was admitted to stay with me during the day. It was so nice to see her and to have someone there with me a lot of the time. Living 2 hours away from the hospital and having full-time jobs, it's harder for my husband and in-laws to make it up to visit as often, so I really appreciated having Jennifer there.

I've had an endocrine appointment, a pain management appointment, a transplant appointment and a CF appointment since I was discharged. All 4 appointments went well. I've managed to improve my weight since I was admitted to the hospital, so that's a bonus! For now, it's just the waiting game again. Waiting. Praying. Hoping. For that call to come!

Tuesday, March 26, 2019

Life, Love, and the Transplant List!

My foster dad, Chad.
From my visit in July to Minnesota
It's been a year since my last post, again... I'm so bad at updating! There's been some big things happening over the past year, and here's the recap:

My best friend, Lucas!
Visit to Minnesota in July
Shortly after my last post, the "T" word was brought up by the CF team I was seeing at Saint Joseph here in Indiana. Transplant. The entire winter 2017-2018 was a struggle for me. My body could not adjust to or tolerate the drastic climate difference between North Carolina and Indiana, and I spent essentially all of the winter alternating different courses of IV antibiotics to try and rescue my lungs, but nothing was working. In May, it was decided that I would be transferred to Spectrum Health in Grand Rapids, Michigan to undergo transplant evaluation again. St. Joe has a CF center, but they are not a large enough facility, at this point, to offer transplants. We chose Grand Rapids because even though Chicago is closer distance-wise, the commute/traffic would make the drive time longer and also because they (Spectrum) have a fantastic transplant reputation.

Playing Life with my sisters and Brandi.
Visit to MN.
After my experience with the transplant team at Duke in 2016, I was extremely nervous about going through evaluation again. I didn't want to try jumping through a thousand hoops, just to be denied again. With some significant encouragement from my amazing family and close friends, the new journey began. I underwent most of my evaluation while inpatient at Butterworth hospital, and for the first time ever going through anything evaluation/transplant related, I felt heard and I felt sincere concern, compassion, and caring from the entire transplant team. I was discharged from the hospital with my main goal being gaining weight. The biggest concern and barrier, at that time, was how malnourished and underweight I had become due to fighting so many lung infections and because I was fighting insurance to cover the enzyme cartridges I require to do tube feeds.
Hannah and I <3
Visit to MN

Throughout the rest of May and June, I managed to gain enough weight to be considered a "good candidate" for transplant! However, during this time, I also stabilized my lung function as summer was upon us, and because lung function and weight tend to be highly correlated in Cystic Fibrosis. So, YAY! I was once again "too healthy" for transplant from a lung function standpoint. However, everyone agreed that I needed to be followed closely by the transplant team, just incase something were to arise emergently or if I began to decline again. And unfortunately, that was the case soon after.

The guitar pick from STP
In July, my mom came up from North Carolina to visit over the fourth of July and from here her and I drove back to our home state, Minnesota, to visit some family and friends. Unfortunately, Jeff was unable to come with due to his work schedule, but it was still so nice to be able to see and visit my foster family and some friends and family that I hadn't seen in several years or more. Much of the time was spent poolside at my foster parents house, as they were generous enough (as they always are-- I am so blessed to have them in my life) to allow us to stay with them and have friends over to visit. I even got to get some riding in with my little sisters, who are not so little anymore! I love horses and I love my sisters, so what could be better than that?!?! :)

Jeff and I with Theory! <3 
The week after we got home from Minnesota was my 26th birthday! Jeff and I went to a music concert, called The Bear's Big Growl, put on by a local rock radio station. They had Nonpoint, Nothing More, Saving Abel, Stone Temple Pilots, & Theory of a Deadman there. I got a guitar pick from STP! AND Jeff got us backstage to meet Theory!!! :D Even though it was so dreadfully hot that day, and I almost passed out, it was awesome just to be able to meet them! Have I mentioned lately how incredible my husband is?

After the benefit ride with my mother and father in law,
my foster mom and another member of the Post
Between the end of July, August, and September, I spent a solid 10 weeks on IV antibiotics trying to fight off whatever was ravaging my lungs, but nothing worked. My lungs were declining despite every effort to combat the infection. We (my CF team and I) decided we needed to give my body a break from the antibiotics at the end of September because I was getting so sick from the side effects of the meds, that I hadn't ate anything solid in almost a month and a half, and was relying 100% on tube feeds for all of my nutritional needs.

My parents and brothers at my
benefit ride fundraiser

September was a big month for us. We finally closed on our house here in Indiana. We'd been looking for almost a year after we had one house fall through the day before closing back in the spring. Monday, September 10th we signed papers and began moving that week. That Friday, my family drove up from North Carolina with a small U-haul filled with some of the things we hadn't been able to fit in the U-haul when my father-in-law, Bruce, came down to get me in Nov. 2017. It was so good to see them all again. I hadn't seen my dad or my brother, Lucas, in almost a year. They'd come up to deliver the rest of our things and to attend the Amber's Army Fun Ride fundraiser our American Legion Post 83 put on to help us with transplant fundraising. My foster mom, Jen, was also able to make it down from Minnesota for that as well. In addition to the transplant fundraising, the American Legion Riders at Post 83 (which we are also members of) gifted Jeff and I with tickets to see Garth Brooks perform the first concert of his Stadium tour at Notre Dame!!! (For those of you who don't know, Garth is my FAVORITE country singer!)

On the ride <3 

So, October 20, Jeff and I endured the freezing rain, sleet, snow mixture to stand out in our Carhartt jackets, our cowboy boots, hats, mittens, and blankets to see Garth perform! We'd planned on bringing rain ponchos, but of course halfway there, we realized we'd forgot to grab them. (Go figure that this was the only weekend in all of October and November that was THAT cold and that it snowed/rained...) Jeffery wasn't too keen on the whole idea, but he knew how excited I was to go, so he sucked it up and didn't complain too much.
Jeff and I at Garth

November was kind of crappy month... November 20 was six years without my grandma JoAnn. November 24 we would have been celebrating her 76th birthday if she was still with us. No matter how much time passes, no matter how long she's been gone, the pain and hurt never lessens. Every time I think of her, every time I get excited and want to tell her something, it feels as though it's still a fresh wound. There is never going to be a woman that could be as amazing as my grandma Jo was. I also had another CF appointment in November, which verified our thoughts from back in September, that the antibiotics were probably not going to do anything more for me. At that time, the team thought it best to get me back in sooner to see the transplant team. They also spoke with the transplant team and told them they strongly think I am at a point where transplant is my best option as I showed even more decline throughout the summer and fall and because of my history of doing quite poorly through the winter months, they would like to see that we go ahead with pursuing transplant before my "transplant window" expires.
Garth Concert!

For those of you who are not very familiar with transplant, there is what is commonly referred to as a "transplant window". To be in your transplant window means you are now "sick enough" that transplant seems to be the last option available to prolong life, but you are also "healthy enough" to undergo transplant successfully. Transplant is NOT a cure. It's really trading in one set of issues for another and the results can be unpredictable, which is why it's a last resort option.

I had an appointment with the transplant team in the first part of December. We all agreed that we felt like I was in my "window" so we proceeded with the remaining testing that was not completed in May. Again, my biggest obstacle was weight. I was sent home with a list of appointments, tests/procedures, and work that I needed to be doing/get done before returning back to the clinic for a whole day of meeting with everyone on the team. At that point, I was already doing everything I could possibly think of to try to gain, and even though my weight isn't perfect we believe it's basically as good as it's going to get and it was decided it wouldn't be safe to try to prolong transplant anymore solely due weight anymore because the further I decline, the further my weight is likely to decline. I was managing the bare minimum weight requirements for transplant approval and it was decided that would have to be acceptable. December, January, and February were full of pulmonary rehab, appointments, and a few last minute tests/procedures for evaluation to make sure I would be a good candidate for transplant from a medical standpoint.

My baby sisters! They came back right
after they left for the airport just to
take one more picture! <3 
Getting manis and pedis with my favorites!
February was a busy month! Both my mother-in-law and father-in-law celebrated birthdays! Jeff and I doggie-sat their dog, Coco, while they were on vacation in Mexico! (I'm a little jealous! But they did bring me back a BEAUTIFUL elephant souvenir!) Jeff and I celebrated our 3 year wedding anniversary on the 10th. My foster mom flew in to go to my CF and transplant appointments on the 13th, since my in-laws were in Mexico and the hubby was working. And then my baby sisters flew in to spend the long weekend with me too! We got spoiled with manis and pedis and watched some movies and colored while they were here. Nothing too exciting because I just don't have the energy required for too much activity right now, but it was just awesome to hang out with them and have them around! My CF appointment showed continual decline in my lung function (as expected). And my transplant appointment was a final appointment before they brought my case back to the committee for final review. February 15th, which was a Friday, I received a call from my transplant coordinator that the team approved me for transplant! Everything was contingent on insurance approval then (which could take up to 10 business days). So I was preparing myself to have to wait the FULL 10 business days to find out if they would actually cover transplant. Miraculously, I received another call the following Wednesday, February 20th, from my coordinator telling me insurance APPROVED ME FOR TRANSPLANT and I am now ACTIVE on the transplant waitlist!

March has been a pretty quiet month so far. I had one appointment with the transplant doctor and an iron infusion last week. I head up to Grand Rapids tomorrow for my second of the two infusions. I see the transplant doc again in April and I have CF clinic again in May as well as an endocrinology appointment. For now, I'll just continue with pulmonary rehab and wait until my call comes!

My blessing > my struggles. 

Tuesday, March 13, 2018

The Battle: Mind, Soul, and Body

Where do I start...

My last post was in September, right after we got home from visiting Jeff's family in Indiana. Shortly after I made that post, we kind of decided, "spur of the moment", to pack up and move to Indiana. Jeff had a great job opportunity and we are able to be closer to his family. So Jeff left a few days after we arrived back in North Carolina to get a jump start on our new life chapter in IN. I stayed behind in NC to get our house packed up and take care of a few other things there.

During this time, I found out I was expecting! I was so excited, but so terrified because I lost our babies the year before. At a routine OB appointment, I found out there were TWO heartbeats! We were having TWINS! (Identical!) My previous miscarriage was with fraternal twins. I was walking on eggshells, praying so desperately for these babies to stay alive. Unfortunately, we lost them around the same time as our first set. My heart shattered, again. There is nothing I want more than to have a child, but it's all in God's hands and I have to trust him!

I joined Jeffery, again, in Indiana on Thanksgiving Day. My father-in-law drove down to NC to tow the U-haul and I followed behind in my car. It took about 13 hours in total. And it was a fairly uneventful drive aside from the U-haul trailer falling off of the truck going over a bridge in Charleston, WV because the guy at the U-haul place didn't allow for any give when he tightened the ball on the hitch. Thankfully, dad's a badass and was able to get the truck and trailer safely off to the side of the interstate without damaging the truck, trailer, or anything in the trailer!  Mator and Diesel did really well on the drive, most of the time they were sleeping.

A few days later, I was hospitalized for about a week for an exacerbation and finished out another 2 weeks at home. Home is with my mother and father-in-law for now, while we search for our dream house. We've looked at quite a few houses over the last few months, but haven't found one we love yet. I've been in the hospital/on home IVs 2 more times since. My body is not adjusting well to the dramatic climate between NC and IN. My lung function actually went down while on IV antibiotics the last time. I'm no longer responding to any of the other antibiotics that have worked in the past. So we decided I needed to be admitted and desensitized to Zosyn, which I am anaphylactically allergic to, because it's the only one my cultures are showing a response to. However, my little brother, Ryan, was graduating OSUT (basic training for infantrymen) the following week and I already had bought a plane ticket to Georgia to go see him, and I was NOT missing that. The team agreed to me going and being admitted when I returned to start the desensitization and 3 weeks of IV antibiotics. I had the best time seeing my family (whom I haven't seen in 2-3 years!) while in GA, but I was completely spent by the time I got back home and was a direct admit the next day.

The desensitization went smoothly! I did not need any Epi shots (thankfully!) and we were able to manage reactions with just IV Benadryl every 2 hours. I had another bronchoscopy done while I was in. We were able to clean out quite a bit of junk, but there was still a lot left as I was in quite a bit of distress during the procedure so we had to stop. I was also put on blood pressure medication with this admission as my BPs were extremely high without a clear cause. I am continuing to take the BP meds for now and we will reevaluate at a later date. I was inpatient for the first week of this course, and I am currently working on my 3rd week of antibiotics at home. Still managing reactions with IV Benadryl and have an Epi pen on hand just in case.

The past few months have been hard for me. I've been battling many physical symptoms of CF (which isn't really new), but I've been struggling much more with the emotional/mental aspect of living with CF. And it has been a challenge trying to keep my head in the right frame of mind. I am constantly trying to find something, anything to just hold on to, to keep myself going and to keep fighting the fight. But I am tired, not only physically, but also emotionally and mentally. It angers me to not be able to do everything a "normal" 25 year old woman should be able to do. Being tied to an oxygen tank and IVs more often than not is so difficult. All I want to do is be able to go to the grocery store without needing to come home and sleep for the rest of the day, just to recoup from the hour long endeavour and to be able to contribute within our family and within society.

I have been fiercely fighting to keep my head above water, but it just seems so useless, hopeless. One step forward then three steps back. My energy bank is empty. And I am constantly feeling like a burden to all those around me. I unintentionally make myself believe that their lives would be so much easier without me in it. It's getting harder and harder to convince myself otherwise. I'm still fighting and I'm not giving up, but I really am not sure how much longer I can do this... :(

Wednesday, September 13, 2017

Quick, Long Update! Haha...

Well... I have completely failed in keeping this blog updated. Sorry about that. I'll try to hit on the key things that have happened since my last post.

December 2016: Jeff graduated from HVAC school. My mom and I managed to make to Texas to surprise him for his graduation. So that was pretty freaking awesome! :) I started my first legitimate job for the first time in about 5 or 6 years at as a gas station attendant as well.
My mom and my foster dad both celebrated birthdays at the begining on the month.

January: Nothing exciting happened in January that I can remember.

February: Jeff and I celebrated our one year wedding anniversary! It was a beautiful weekend. He got us a nice hotel in Raleigh and planned an entire weekend of nice dinners, massages, the circus, horseback riding, and a fun park. :) It was a GREAT weekend!
I also began my Real Estate Licensing classes. I also was forced to quit working at the gas station because my boss refused to work with my class schedule even though I informed her before I was hired that I would need a schedule change in Feb.

March: I finished my Real Estate classes. Passed the course with flying colors! And very much enjoyed it.
My baby sister, Hannah, had her 13th birthday and my foster mom celebrated another birthday as well!

April: I took my state and national Real Estate licensing test and passed on my first try! I am now a licensed provisional broker; however, I am not on active status and cannot practice real estate until and unless I activate and work under a BIC.
Jeff's mom and dad were also down to visit in April. They helped us get so much done on our kitchen remodel!
My baby sister, Kassy, turned 11!
Jeff also experienced his first dog bite encounter while at work.
And we attended the CF Walk with our awesome friend Amy.

May: My good friend, Kayla, flew down to NC from MN and spent a week with us. We managed to stick a beach day in there with my mom.
We celebrated Jeff's 23rd birthday on the 19th with grandma and grandpa Goff who drove to visit from Arizona. Unfortunately, they were in an accident on their way, but thankfully they were close enough when it happened that we were able to get to them. We enjoyed a few days with them and took them to the Mayberry Farm Festival in Mount Airy while they were with us.
And my dad turned a whole year older as well! <3

June: I was called for an interview at Bahnson. Less than a week later I was called back for a second interview and one week after that I was called with a job offer! I accepted the offer and I have not been disappointed! I absolutely love my job!
My younger brother, Lucas, also chose to move to NC in June and we celebrated his 23rd birthday... HAPPY SISTER! :)
Even though some good things happened in June, I also experienced two significant losses. My paternal grandmother passed away and my dear friend, Megan, also passed away. :(
Jeff's mom and dad also can down to visit again and worked more on our kitchen remodel.

July: I was hospitalized for the first time in July in almost an entire year! July 16th would have been a year of no hospital stays, but July 7th I ended up in the ED with a GI bleed, which turned out to be bleeding ulcers. I was in the hospital for about a week with that, but manage to get sprung the day before my 25th birthday! We celebrated my birthday (and my one year of no CF related hospital stays) on my birthday.
We also got a motorcycle in July! And my older brother, Nick turned 27!

August: We spent much of August just working and preparing for our trip to Indiana and Minnesota. We got to go to a Lynyrd Skynyrd, Hank Jr, and Aaron Lewis concert, which was awesome! Got to see the solar eclipse.
And my sister, Stephanie, turned 16!!!

September: Jeff and I began our vacation journey on the first. Unfortunately, we broke down in Ohio. :( Thankfully, Jeff's dad, Bruce, and his friend Wayne were able to rescue us! (We like to say we got rescued by Batman, because, ya know.... Bruce Wayne?!?!?!) We towed the truck the rest of the way to IN, but we were unable to make up to MN. :( We got the truck fixed the day before we had to leave, but we were able to enjoy our time in IN with family and friends even though I wasn't feeling well. We packed up and headed home on the 10th.
And I ended up in the ED on the 11th with severe shortness of breath. Turns out I have Pneumonia. :( So I am currently in the hospital in Sanford waiting on a bed opening at UNC.

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!…/COTAforAmberG/

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!
Bonfirefunds (tee-shirt fundraiser): 

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."