Why I said no to yet another CAD blood test

I left the doctor’s office feeling deeply conflicted, wondering whether I had made the right decision. I didn’t even look at the orders for a blood test before stuffing them into the back of my car seat. I had reached the end of my tolerance.

I had just said no to another blood draw.

Actually, I had pushed a figurative pause button. After six hospitalizations since January and all the subsequent follow-up appointments, my forearms were splotched with bruises. I had stopped counting how many times blood was drawn or medicine was administered through my IV. The biggest problem is my veins: They always “roll” when the nurse tries to insert the needle. Having multiple pokes is normal for me.

My last hospitalization was April 25-28, and I had a hematology-oncology visit on May 6, where more blood was drawn. My hemoglobin and red blood cell counts were slightly higher, but I was still significantly anemic. My team told me to return in two weeks.

My primary physician likes to follow up 10-14 days after each hospital discharge, so I agreed to visit his office on May 13. That was the day of my rebellion.

I wanted a break.

Recommended Reading

July 9, 2025 by Mary Lott

Understanding blood work from a CAD patient’s perspective

My reasoning

Since I was diagnosed with cold agglutinin disease (CAD), I have grown accustomed to blood draws and IVs. Blood analyses provide my medical team with clues about my disease activity and progression. So, it was with much trepidation that I decided to skip that blood test.

In this case, though, only one week had passed since my last blood draw. I hadn’t experienced any noticeable symptoms in that time, such as significantly lower energy or increased pallor, so my levels likely hadn’t changed much.

Advisory panel guidance from the Canadian Agencies for Drugs and Technologies in Health (now Canada’s Drug Agency) recommends a minimum retesting interval of 25 days for serum protein electrophoresis. This kind of test can detect the presence or absence of monoclonal immunoglobulin M, or IgM, autoantibodies that often characterize CAD. Waiting 25 days between tests could give my veins a chance to heal.

I experience a lot of pain and bruising during blood draws. Not only are my veins missed at times, but sometimes they “blow,” meaning the vein has ruptured and is leaking blood into the surrounding tissue. I often say that my arms are technicolor, referring to the bold, vibrant look of classic color films. Frequently, I have swelling and tenderness at these sites.

My final reason for declining this particular blood test was my uncertainty about whether the blood samples would be handled correctly. Tubes need to be pre-warmed, kept warm, and processed immediately.

At my latest appointment with my CAD team, it took only one stick to find a viable vein. The laboratory technician apparently was alerted in advance of my visit, as she arrived carrying the wrapped blood vials. She left immediately after the blood draw and processed the blood quickly. Within the hour, she returned and shared the results.

I want to be very careful not to advocate ignoring doctors’ advice. They have different and specialized knowledge that I don’t possess. However, just this once, I felt I was receiving too much of a good thing. My latest blood work showed a significant improvement in most areas. I’ll have more done at the end of June to be sure.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.