{"id":59287,"date":"2021-09-03T13:05:49","date_gmt":"2021-09-03T17:05:49","guid":{"rendered":"https:\/\/rarediseases.org\/martins-fight-against-waldenstrom-macroglobulnemia\/"},"modified":"2021-09-03T13:05:49","modified_gmt":"2021-09-03T17:05:49","slug":"martins-fight-against-waldenstrom-macroglobulnemia","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/martins-fight-against-waldenstrom-macroglobulnemia\/","title":{"rendered":"Martin\u2019s Fight Against Waldenstrom Macroglobulnemia"},"content":{"rendered":"

I\u00a0have been\u00a0a healthy\u00a0person my whole\u00a0life. I\u00a0never drank alcohol\u00a0or\u00a0smoked,\u00a0and I\u00a0had\u00a0a good diet. In 2004,\u00a0I began to have some questionable numbers on\u00a0blood\u00a0work,\u00a0but my\u00a0primary doctor could never really tell what was going on.\u00a0My knees shook\u00a0when\u00a0I\u00a0was referred to a\u00a0hematologist\u00a0and oncologist in 2010.\u00a0I was given a diagnosis of\u00a0Monoclonal gammopathy of undetermined significance (MGUS).\u00a0I was told\u00a0that\u00a0I had an\u00a0indolent\u00a0lymphoma that\u00a0may\u00a0or\u00a0may\u00a0not develop, and that I should\u00a0“go on living” and we would “watch and wait.\u201d<\/span>\u00a0<\/span><\/p>\n

In early May 2019,\u00a0I was in for the shock of my life\u00a0when\u00a0I began to feel\u00a0unwell.\u00a0After being\u00a0hospitalized\u00a0for what I thought were\u00a0kidney issues, I was given the diagnosis that I had\u00a0Waldenstrom\u00a0macroglobulinemia\u00a0(WD),\u00a0a very rare\u00a0type of lymphoma.\u00a0My health was\u00a0very critical\u00a0because\u00a0the WD\u00a0had attacked my kidneys.<\/span>\u00a0<\/span><\/p>\n

I\u00a0was told that I\u00a0needed to\u00a0begin chemotherapy\u00a0immediately, and\u00a0doctors would try to stop any further damage to my kidneys.\u00a0This turned\u00a0my family\u2019s life upside down.\u00a0I live each day in fear and\u00a0dread,\u00a0and\u00a0I\u00a0pray that I can recover.\u00a0I want to be\u00a0able to see my two sons finish growing up,\u00a0and to live to see my wife and myself as grandparents one day.<\/span>\u00a0<\/span><\/p>\n

Because I\u00a0am at such\u00a0a\u00a0high risk\u00a0for COVID-19\u00a0from\u00a0my\u00a0disease\u00a0and from having to be on kidney dialysis for\u00a0three\u00a0months, I am only able to leave my house for chemo treatments. My wife and children\u00a0must\u00a0take\u00a0extraordinary measures to keep me safe from any\u00a0possible exposure\u00a0to this dreadful virus. My sons\u00a0must\u00a0do virtual school, and my older son\u00a0cannot\u00a0work outside the house while home from college.\u00a0My wife\u00a0applied\u00a0for a medical exemption at her job, and was granted a temporary telework status, because she\u00a0cannot\u00a0risk\u00a0possible exposure.<\/span>\u00a0<\/span><\/p>\n

The stress from this\u00a0pandemic\u00a0has negatively affected\u00a0me;\u00a0I am constantly afraid of being exposed and having my improving health be set back.\u00a0My nephrologist tells me on every telehealth appointment\u00a0that I am at the highest risk for catching COVID because my immune system is at the lowest possible levels.\u00a0I\u00a0am told that having as little stress as possible will\u00a0reduce\u00a0burdens on my immune system,\u00a0which\u00a0will help my health overall. I have read that stress can kill.\u00a0I’m\u00a0already fighting for my life against this\u00a0disease,\u00a0so\u00a0having less stress to deal with strengthens my mind and body.<\/span>\u00a0<\/span><\/p>\n

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

I\u00a0have been\u00a0a healthy\u00a0person my whole\u00a0life. I\u00a0never drank alcohol\u00a0or\u00a0smoked,\u00a0and I\u00a0had\u00a0a good diet. In 2004,\u00a0I began to have some questionable numbers on\u00a0blood\u00a0work,\u00a0but my\u00a0primary doctor could never really tell what was going on.\u00a0My … <\/p>\n

Continue reading “Martin\u2019s Fight Against Waldenstrom Macroglobulnemia”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13154,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[2227,192,505,2754],"tags":[203,204,2229,2072,798,2045,2758],"class_list":["post-59287","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-covid-19","category-patients-members","category-patient-stories","category-voices-of-rare-cancer","tag-cancer","tag-chemotherapy","tag-covid-19","tag-lymphoma","tag-rare-cancer","tag-rare-cancer-day","tag-waldenstrom-macroglobulnemia"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59287","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59287"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59287\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13154"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59287"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59287"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59287"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}