Ed. note: Many of us need to go the Emergency department from time to time, for things not related to WM.  During the discussion of our symptoms with the triage nurse, there is the inevitable request along the lines of, “Tell me about your medical history”.  Of course, we obediently mention that we have “Waldenstrom’s Macroglobulinemia”.  They express puzzlement.  We spell it for them; they type it into our medical record.  Possibly correctly.  We explain that it is an indolent form of non-Hodgkin Lymphoma.  That they understand. 

But not all non-Hodgkin Lymphomas have the same implications, when it comes to diagnostic tests that might be recommended in an emergency situation.  As is clear from this cautionary tale, submitted by one of our members!

I had some intermittent leg cramping in my left calf recently and chalked it up to muscle spasms.  I even went to physio to get exercises for it and it seemed to help.

In retrospect it was Deep Vein Thrombosis (DVT) and when the clot broke up it ended up in my lungs.  This led to a trip to Emerg and a subsequent diagnosis of Pulmonary Embolism (PE).

My trip to Emerg wasn’t particularly urgent as I only had minor pain on the left side of my chest and thought (yet  again) that it was probably just a muscle pull.  This thinking deferred my trip for several days.

In Emerg, the doctor did an ECG, standard blood tests, and a chest Xray.  All of these came back favourable and he appeared  on the cusp of discharging me when he paused for a moment and said we should probably do a screen for blood clots (the “D-Dimer” test).  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.

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.

Subsequent googling led me to learn that the gift of WM makes us more susceptible to “venous thrombosis” which means DVT and PE.  This interesting study, from 2014, can be read at https://onlinelibrary.wiley.com/doi/full/10.1111/jth.12724.  Some brief quotes:

Results – 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 2.5–6.4).  The risk was significantly elevated 5 (HR = 2.3, 95% CI 1.7–3.0) and 10 years after diagnosis (HR = 2.0, 95% CI 1.6–2.5).  There was no increased risk of arterial thrombosis during any period of follow-up time (10-year HR = 1.0, 95% CI 0.9–1.1).

Conclusions – Venous thrombosis is a significant cause of morbidity in patients with WM/LPL.  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.

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.  I wish I had known this before hand and I wouldn’t have dismissed  the unusual leg cramping, and in Emerg I would have told them “I have WM and am at elevated risk of venous thrombosis, so please order a blood clot screen“.  I obviously told them I have WM but, as we are all accustomed to, it was met with blank stares!

I am now on blood thinners and waiting for a referral to some brand new specialists including a non-malignant hematologist and a respirologist.  Emerg care has been excellent, but as I write this [Ed. note: August, 2022] the connection with the specialists is broken because they are so overwhelmed.  I would note that my WM doctor, who is a hematologist / oncologist, does not deal with these conditions.

Ed. note:  We have added some information to our web site about DVT and its relation to WM — see Symptoms & Diagnosis.