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.