{"id":36598,"date":"2025-11-03T14:51:00","date_gmt":"2025-11-03T19:51:00","guid":{"rendered":"https:\/\/nephcure.org\/?p=36598"},"modified":"2025-11-03T13:58:37","modified_gmt":"2025-11-03T18:58:37","slug":"finding-strength-one-brick-at-a-time-amanda-skeens-transplant-journey","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/finding-strength-one-brick-at-a-time-amanda-skeens-transplant-journey\/","title":{"rendered":"Finding Strength, One Brick at a Time: Amanda Skeens\u2019 Transplant Journey"},"content":{"rendered":"
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\"\"<\/figure>\n<\/div>\n\n\n

For New Jersey native\u00a0Amanda Skeens, life has always been about connection to her family, her passions, and her resilience. Whether cheering on her beloved\u00a0New York Rangers\u00a0or spending hours building elaborate\u00a0LEGO sets, Amanda knows how to find joy in the small things.<\/p>\n\n\n\n

Her joy was tested in\u00a02007, when she was diagnosed with\u00a0Nefropat\u00eda por IgA<\/a>, a\u00a0enfermedad renal rara<\/a>\u00a0(RKD) discovered through a routine physical from her urinalysis.\u00a0<\/p>\n\n\n\n

\u201cI never had any visible or physical symptoms of anything being wrong,\u201d Skeens stated. \u201cSuddenly, my being adopted had me thinking that I have no medical history to look back on.\u201d<\/span><\/p>\n\n\n\n

For years, Amanda managed her disease with limited treatment options. In\u00a02018, stress from work triggered a dangerous kidney flare-up that caused her protein levels to spike dramatically. When her doctor advised that she begin\u00a0trasplante<\/a> evaluation, it was a difficult reality to face.<\/p>\n\n\n\n

\u201cI knew I would get to this point eventually,\u201d she said. \u201cBut I was declining so rapidly that it was hard to process this whole new world.\u201d<\/p>\n\n\n\n

Determined to take charge of her care, Amanda switched nephrologists and found the support she needed. \u201cMy new nephrologist was fabulous from day one,\u201d she said. \u201cHe told me he would help delay my transplant, and he did, for almost five years.\u201d<\/p>\n\n\n\n

In\u00a0December 2024, Amanda received the call she had been preparing for \u2014 she was ready for a\u00a0kidney transplant. Her donor would be her cousin,\u00a0Joe, who had selflessly volunteered to be tested.<\/p>\n\n\n\n

Today, nearly one-year post-transplant, Amanda and Joe are both thriving. \u201cHe jokes that he\u2019s doing everything he normally would with \u2018only one kidney,\u2019\u201d she said. \u201cBut I will forever be indebted to him for this generous gift of a second chance at life.\u201d<\/p>\n\n\n\n

As she recovered, Amanda leaned on her favorite hobby, which was building\u00a0LEGO sets to keep her mind and spirit strong. She bought a massive set\u00a0with more than 3,000 pieces to work on after surgery.<\/p>\n\n\n\n

\u201cI use LEGO as a fun way to relax and decompress,\u201d said Amanda. \u201cWhile doing LEGO, I listen to music, and I am super focused on building and checking out of the world for hours on end. LEGO has been a great escape for my mental health because this is what I find to be a fun and light-hearted activity to do.\u201d<\/p>\n\n\n\n

Amanda\u2019s journey has taught her the power of self-advocacy and mental resilience.<\/p>\n\n\n\n

\u201cLooking back, I feel like my diagnosis did change the way I looked at my life, because I never let this determine who I am as a person,\u201d she said. \u201cMy biggest advice for other RKD patients is that you must be your own advocate and arm yourself with the knowledge that is available to all of us and bring it forward to your nephrologist.\u201d<\/p>\n\n\n\n

To read more stories, just like Amanda\u2019s,\u00a0haga clic aqu\u00ed<\/a> or to help continue to raise awareness about rare kidney disease, comparta su historia con NephCure aqu\u00ed.<\/a><\/p>","protected":false},"excerpt":{"rendered":"

For New Jersey native\u00a0Amanda Skeens, life has always been about connection to her family, her passions, and her resilience. Whether cheering on her beloved\u00a0New York Rangers\u00a0or spending hours building elaborate\u00a0LEGO … Leer m\u00e1s<\/a><\/p>","protected":false},"author":12083,"featured_media":36599,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[354],"tags":[687],"disease-category":[253],"resource-type":[260],"treatment-option":[],"hf_cat_post":[593],"class_list":["post-36598","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","tag-nephcure-spotlight","disease-category-focal-segmental-glomerulosclerosis-fsgs","resource-type-news"],"acf":[],"yoast_head":"\nFinding Strength, One Brick at a Time: Amanda Skeens\u2019 Transplant Journey - NephCure<\/title>\n<meta name=\"description\" content=\"For New Jersey native\u00a0Amanda Skeens, life has always been about connection to her family, her passions, and her resilience. 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