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!
GOD IS SO GREAT!
- 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...