My father has been living with Cold Agglutinin Disease for the last 4 years – a rare condition that leads to the breakdown of red blood cells when he’s exposed to cold weather. In this blog series I explore his disease from the personal side and the professional side, as his daughter and as a qualified medical doctor. Through telling our story, piece-by-piece, I hope to raise awareness, share knowledge, and build friendships within the CAD community.
Part 2: Slowing Down
Since his youth, Dad has always been a keen runner. On our last family trip to Ireland, we stumbled across an old diary cataloguing the times it took for him and his siblings to race each other around an 8-kilometre (Approximately 5 miles) loop starting and finishing at their summer holiday beach cottage. After meeting Mum, starting a family, relocating to Australia, and working more than ever, it would be natural to assume Dad’s love for running would be put on the side-burner. This was not the case. Instead, running became one of the ways our family would spend quality time together. Almost as far back as I remember, Dad would round up my brothers and sisters and I for relay races around our local grass oval. As we grew older and stronger, our handicaps were changed to reflect this and always resulted in a close finish, particularly on the last lap which was “winner takes all.” Now we’re all adults, we still try to have a virtual meet up as a family at our local ParkRun event on Saturday mornings whenever we have the time.
Some years ago, we noticed Dad’s time for the 5km ParkRun course began to slow down and we all assumed it was a normal part of getting older, but after discovering he has CAD, we now know there’s more to it than his age alone. Since he was diagnosed with CAD, Dad has had a Haemoglobin level (a red blood cell marker) that’s fluctuated from 110 (11.0 US) right down into the 60’s (6s US), at which point he experienced palpitations and other symptoms, and required a blood transfusion and specialised therapy. To give perspective, we found an old blood test of Dad’s which showed his Haemoglobin used to be 160 (16.0) (normal reference range for a male lies approximately between 130 – 165). With the benefit of hindsight, it’s likely that his new habit of afternoon naps on the weekend and occasional irritable moods were related to his declining Haemoglobin level, which dropped by 50 (5) points before we found out that he had CAD and initiated a treatment plan.
Nowadays, with the help of therapy, Dad’s been able to maintain a fairly steady Haemoglobin level of about 90 (9.0). However, in the earlier stages of his disease, around the time of starting treatment, there were times it dipped dangerously low and he was very pale. In these instances, it was usually Mum who’d be the first to notice a change in Dad’s colour and energy and suggest he get another blood test done to check his levels. Getting a blood test was not always the most straightforward task as I’m sure many CADdys know, and this will be the focus of a future blog post. For Dad, who’s been challenged to adapt to life with this condition, it’s been a learning curve to be able to identify the difference between what’s normal tiredness and what’s CAD-related exhaustion that requires medical input. Dad still joins in ParkRun whenever the weather permits, and for him, his run-times have pretty well matched the peaks and troughs of his Haemoglobin level. These days, when he sees and feels he’s slowing down this is a useful prompt that shouldn’t be ignored and suggests he might need some medical input.
In part 3 of this blog, I explore Dad’s experience of jaundice (turning yellow) - how his appearance led people to believe he might have cancer, and how this assumption affected us.
Medical Spotlight: Anaemia
Anaemia is the medical term used to describe a low Haemoglobin or low Red Blood cell count. Haemoglobin is the protein subunit in red blood cells that carries oxygen around the bloodstream and delivers it to organs and tissues in the body. Anaemia can occur in many different medical conditions or nutritional deficiencies. When it develops gradually over time, it’s not always easy to spot. Some clues might be feeling tired or weak, appearing pale, experiencing dizziness and in more severe cases, shortness of breath and/or chest pains. In CAD, anaemia occurs by a disease process called “haemolysis,” which refers to the breakdown of red blood cells within the body. For people with primary CAD (i.e. not related to an underlying malignancy or infection) the breakdown of red blood cells is triggered by a disorder in the immune system, typically a clonal proliferation of B-cells. These abnormal cells produce CAD antibodies, which tag red blood cells for destruction by the body. Haemoglobin levels are important to monitor in CAD, but please keep in mind when sharing and reading stories with other CADdys that there are slight variations in the ways different laboratories test this marker, and the results may be presented with different units or normalised reference ranges.