I've decided that this bonus life should not be spent behind the screen of a computer. Consequently, I spend less time on Instagram and my blog. I am out making memories, not content. While social media was an aspect of life that was tremendously helpful and gave me purpose through my trials, I feel it's time to distance myself from the virtual reality I resided in and live more in the moment. In all honesty, I don't have much content these days for the blog. I see my medical team only every few months during this glorious period of stability. (Yay!) I absolutely do not plan to run away forever, (many of my best friends are still on the other side of a screen!) I simply plan to take some "me time" to find out who I am sans tanks, tubes, and social following. I am learning to live without my sole identity being, "that dying girl," and I need some space from that social circle to find out who Chanel is again... My therapist taught me that! lol ;) This means emails may go unread, comments may go unanswered, and updates will become infrequent. Please understand this is not because I no longer care, it's because I now have a job and other responsibilities that diminish my free time. Prior to my miracle I had all day to answer emails, comments, and chat online - as mentioned, my whole life was lived behind a screen! It was my escape. So please, excuse my absence. I appreciate everyone who supported me though my darkest days, and I hope you all can support me during my triumphs - even if that means you don't hear from me as often! I am no longer someone fighting for each moment. My life no longer revolves around hospitals, medical devices, and a looming timeline. I am a (mostly) functioning 26 year old and it feels surreal.
Keep in mind, I still post updates on my Instagram. All be it less, but it is definitely more utilized than my blog these days. Blogging seems quite unappealing after a long day of emailing clients at work. Any-who, since it's been almost 6 months I thought I would update you all on my health/life.
In December I ventured out to Chicago for my one year transplant follow up. I underwent a Cardiac MRI, Chest CT, EKG, PFT, Echocardiogram, and blood work. I saw my Motility Specialist and the researching physician who preformed my HSCT. The Cardiac MRI showed stability of my ejection fraction and no further progression of my interventricular septum flattening or right ventricle dilation. I had a bit of pericardial effusion (fluid around the heart), but not enough to need immediate intervention. My Chest CT showed no new fibrosis, just the typical air trapping due to my weak respiratory muscles. My PFTs showed some major improvements! My FVC, FEV1 and DLCO all increased. These tests deal with my ability to move oxygen in and out of my lungs, as well as transfer it to the blood stream. The DLCO was the most dramatic improvement, with a 18% increase! I now sit right around 75% which is incredible for someone with my conditions. My Echo showed lower pulmonary pressures which is awesome as well! Very minimal, but an improvement none the less! My blood work still reflects a lowered immune system, but is slowly improving. At this time I still can't fight even colds off by myself, but it's a start! My inflammation markers are non existent, but my autoimmune markers are still extremely high. It's very odd to me that the markers haven't changed, but my symptoms have. The doctor explained that these markers never really go away, they simply become dormant until activated again. The researching physician was thrilled with my progress and expressed that I should (hopefully) continue to see improvements, especially through out the next 6 months. He gave me a big hug and seemed sincerely thrilled for me.I saw my Scleroderma Specialist in January who was also thrilled with my progress. During our last appointment he was bit worried things weren't following the appropriate post transplant timeline; however, during our visit he saw the improvements he hoped for when referring me for the transplant program in 2016. My skin score has reduced dramatically, my lungs and GI tract have greatly improved, and my joints are insanely less inflamed. I went from 30+ medications a day to one and three medical devices to zero. (Happy tears!) I was going through our old clinic notes and it's been amazing to see the vast improvements since I really started to tank a few years ago. My CDAI (Clinical Disease Activity Index) improved by almost 75% from pre-transplant. I left his office with a six month follow up time - that's the longest I have ever gone without seeing him! It used to be every few weeks you guys!
In non-health related news, Noel and I took our first vacation since I became ill 6 years ago. We went to my happy place; Maui. It was a monumental moment for both os us. No tubes, no tanks, just beach, palm trees, and DOLE WHIP!!!! We honeymooned there 6 and a half years ago - it was one of the last places we experienced "healthy" Chanel. We were both so giddy everyone thought we were on our honeymoon! I tried to spend most my time in the water. The ocean is, and always will be the place I feel whole. We even got to check off one HUGE bucket list item for me; The Lanai'i Cat Sanctuary! It was the most magical day of my life! (Shhh don't tell Noel!) Overall life is amazing right now. I'm gaining strength in my weekly TRX work out class, stretching my vocal chords at monthly open mic nights, and planning for adventures that I never thought I would live to experience.
Hugs,
Chanel
