{"id":5201,"date":"2022-08-18T15:08:41","date_gmt":"2022-08-18T19:08:41","guid":{"rendered":"https:\/\/www.wmfc.ca\/?p=5201"},"modified":"2022-08-20T20:51:43","modified_gmt":"2022-08-21T00:51:43","slug":"wm-and-dvt-one-members-cautionary-story","status":"publish","type":"post","link":"https:\/\/www.wmfc.ca\/fr\/2022\/08\/18\/wm-and-dvt-one-members-cautionary-story\/","title":{"rendered":"MW et TVP - L'histoire \u00e9difiante d'un membre de l'association"},"content":{"rendered":"<p style=\"padding-left: 40px;\"><em>Ed. note: Many of us need to go the Emergency department from time to time, for things not related to WM.\u00a0 During the discussion of our symptoms with the triage nurse, there is the inevitable request along the lines of, &#8220;Tell me about your medical history&#8221;.\u00a0 Of course, we obediently mention that we have &#8220;Waldenstrom&#8217;s Macroglobulinemia&#8221;.\u00a0 They express puzzlement.\u00a0 We spell it for them; they type it into our medical record.\u00a0 Possibly correctly.\u00a0 We explain that it is an indolent form of non-Hodgkin Lymphoma.\u00a0 <span style=\"text-decoration: underline;\">That<\/span> they understand.\u00a0 <\/em><\/p>\n<p style=\"padding-left: 40px;\"><em>But not all non-Hodgkin Lymphomas have the same implications, when it comes to diagnostic tests that might be recommended in an emergency situation.\u00a0 As is clear from this cautionary tale, submitted by one of our members!<\/em><\/p>\n<p>I had some intermittent leg cramping in my left calf recently and chalked it up to muscle spasms.\u00a0 I even went to physio to get exercises for it and it seemed to help.<\/p>\n<p>In retrospect it was Deep Vein Thrombosis (DVT) and when the clot broke up it ended up in my lungs.\u00a0 This led to a trip to Emerg and a subsequent diagnosis of Pulmonary Embolism (PE).<\/p>\n<p>My trip to Emerg wasn\u2019t particularly urgent as I only had minor pain on the left side of my chest and thought (yet \u00a0again) that it was probably just a muscle pull.\u00a0 This thinking deferred my trip for several days.<\/p>\n<p>In Emerg, the doctor did an ECG, standard blood tests, and a chest Xray.\u00a0 All of these came back favourable and he appeared \u00a0on the cusp of discharging me when he paused for a moment and said we should probably do a screen for blood clots (the &#8220;D-Dimer&#8221; test).\u00a0 This came back positive, which led to a CT scan, with contrast dye injection, where the offending blood clots were on display for all to see.<\/p>\n<p>It appeared to me that the blood clot screen (D-Dimer) was at the discretion of the doctor and I was only displaying one of the primary Pulmonary Embolism symptoms.<\/p>\n<p>Subsequent googling led me to learn that the gift of WM makes us more susceptible to \u201cvenous thrombosis\u201d which means DVT and PE.\u00a0 This interesting study, from 2014, can be read at <a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/full\/10.1111\/jth.12724\" target=\"_blank\" rel=\"noopener\">https:\/\/onlinelibrary.wiley.com\/doi\/full\/10.1111\/jth.12724<\/a>.\u00a0 Some brief quotes:<\/p>\n<p style=\"padding-left: 40px;\">Results &#8211; Patients with WM\/LPL had a significantly increased risk of venous thrombosis and the highest risk was observed during the first year following diagnosis (HR = 4.0, 95% CI 2.5\u20136.4).\u00a0 The risk was significantly elevated 5 (HR = 2.3, 95% CI 1.7\u20133.0) and 10 years after diagnosis (HR = 2.0, 95% CI 1.6\u20132.5).\u00a0 There was no increased risk of arterial thrombosis during any period of follow-up time (10-year HR = 1.0, 95% CI 0.9\u20131.1).<\/p>\n<p style=\"padding-left: 40px;\">Conclusions &#8211; Venous thrombosis is a significant cause of morbidity in patients with WM\/LPL.\u00a0 The potential role of thromboprophylaxis in WM\/LPL, especially during the first year after diagnosis and in patients treated with thrombogenic agents, needs to be assessed to further improve outcome in WM\/LPL patients.<\/p>\n<p>I am sure that this fact may be known to the more knowledgeable of you out there, but I was ignorant of this little issue.\u00a0 I wish I had known this before hand and I wouldn\u2019t have dismissed \u00a0the unusual leg cramping, and in Emerg I would have told them &#8220;I have WM <strong>and am at elevated risk of venous thrombosis, so please order a blood clot screen<\/strong>&#8220;.\u00a0 I obviously told them I have WM but, as we are all accustomed to, it was met with blank stares!<\/p>\n<p>I am now on blood thinners and waiting for a referral to some brand new specialists including a non-malignant hematologist and a respirologist.\u00a0 Emerg care has been excellent, but as I write this <em>[Ed. note: August, 2022]<\/em> the connection with the specialists is broken because they are so overwhelmed.\u00a0 I would note that my WM doctor, who is a hematologist \/ oncologist, does not deal with these conditions.<\/p>\n<p style=\"padding-left: 40px;\"><em>Ed. note:\u00a0 We have added some information to our web site about DVT and its relation to WM &#8212; see <a href=\"\/about-wm\/symptoms-diagnosis\/\">Symptoms &amp; Diagnosis<\/a>.<br \/>\n<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ed. note: Many of us need to go the Emergency department from time to time, for things not related to WM.\u00a0 During the discussion of our symptoms with the triage nurse, there is the inevitable request along the lines of, &#8220;Tell me about your medical history&#8221;.\u00a0 Of course, we obediently mention that we have &#8220;Waldenstrom&#8217;s Macroglobulinemia&#8221;.\u00a0 They express puzzlement.\u00a0 We spell it for them; they type it into our medical record.\u00a0 Possibly correctly.\u00a0 We explain that it is an indolent form of non-Hodgkin Lymphoma.\u00a0 That they understand.\u00a0 But not all non-Hodgkin Lymphomas have the same implications, when it comes to diagnostic <a href=\"https:\/\/www.wmfc.ca\/fr\/2022\/08\/18\/wm-and-dvt-one-members-cautionary-story\/\"> [&#8230;]<\/a><\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_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":[28,20],"tags":[],"class_list":["post-5201","post","type-post","status-publish","format-standard","hentry","category-canadian-insights","category-news"],"_links":{"self":[{"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/posts\/5201","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/comments?post=5201"}],"version-history":[{"count":11,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/posts\/5201\/revisions"}],"predecessor-version":[{"id":5228,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/posts\/5201\/revisions\/5228"}],"wp:attachment":[{"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/media?parent=5201"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/categories?post=5201"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.wmfc.ca\/fr\/wp-json\/wp\/v2\/tags?post=5201"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}