May 10, 2019 Latest post:
Dec 13, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Walking through the door of a caringbridge site as the process of heart transplant becomes more real. Back story...I was diagnosed with LMNA-ARVD in July of 2017 after years of dysrhythmia. The effects of this disease is that my body creates a protein that attacks the heart muscle, changing it from muscle to fatty fibrous tissue. An ICD pacemaker was placed as a backup for the VTach. On March 7, 2018 I had a right heart cath and was told by the doc that I needed to lose weight to qualify for a heart transplant as my right heart was failing. On March 8th my husband and I began the Ketogenic way of eating. I was unable to continue working my job in the NICU effective April 30, 2018....so I began my long term disability. Giving up my beloved profession was one of the most difficult aspects of this disease. Always able to make money....life has become a bit of a rollercoaster. Hospitalized since 4/16/19 following a shock from my ICD pacemaker when my VTach rhythms became competitive with my pacemaker and broke through the VFib threshold....💥💥auto shock💥💥....ugh!! No fun! I was admitted that eve....shocked a second time on 4/18/19 and have gone between ICU and the cardiac floor at the U of M hospital. Ablation 5 & 6 to burn the inside and outside of my heart...minor success, continue to have VTach rhythm with any exertion. Up to bathroom and wash hands usually brings several beats of VTach which will likely bring my 7th ablation next week. Tasked with losing weight to qualify for heart transplant...over the last year I have lost 79# with 11 more to go for transplant qualification. With a need to lose 15 more to receive a new heart. I have done Keto/Carnivore way of eating and will remain on this for life...the benefits are fantastic! My reason for this lengthy post is that I have rec’d many private messages wondering what in the world is going on?! I am blessed beyond measure receiving excellent care at the U of M hospital, I have a fantastic team of docs working toward the transplant goal. Though my life is a mess right now...I want y’all to know that Jesus is right with me in the center of this mayhem. Jesus promises to never leave us or forget us as we travel life’s highways and byways....folks...don’t “do” this life without Jesus! When we know the name of Jesus is still isn’t enough...Jesus calls us to be in a relationship with Him. To enjoy a daily walk and talk with Him and to study the scriptures to learn more about Who He is! I can not stress how important my relationship with Jesus is to me...He is my Comforter, my Deliverer, my Hope, my Light, my Strength and the Lover of my soul...Jesus made the way at Calvary so that in the event I don’t survive this earthly life, I would pass from my last breath here to my first breath in His presence. (He made the same provision for any that would choose Him) What joy and comfort that brings to my soul. My desire is to survive this, get a new heart and get back to living life. I want you all to know that you are loved, you are prayed for and you have value! May God move you to seek Him if you do not know Him. Feel free to pm me if you have questions, concerns or whatever! Rattle the walls Lord....time is short, death is sure, sins the curse and Christ the cure!!✝️🥰 Thank you for visiting.