column logo Alithea Athans

I have known for the past 2-plus years that I have an autoimmune disease, specifically cold agglutinin disease (CAD). This is a form of autoimmune hemolytic anemia that is activated when I get a cold or get sick. The activation brings on hemolysis which results in lower hemoglobin (HGB). That lowered HGB is what causes my symptoms.

For many years before I was diagnosed, I would have all kinds of symptoms that came and went. They weren’t a cluster of symptoms, just kind of one at a time. I might feel exhausted then that would pass. I would get sick a lot specifically a lot of sinus infections usually 3 times a year. It drove me crazy.

One symptom sent me to the emergency room a few times and urgent care more times than I can remember. I would experience rapid heartbeat with chest pain. Every time I would have an EKG which proved that my heart was fine. After enough time waiting as you do in the emergency room (ER), my symptoms would subside. I would be sent home with many different diagnoses. Once I was told it was probably gas. Another time I was told it was probably stress and I needed to relax. And yet another time I was told I had become allergic to coffee and needed to cut it out of my diet.

At the time I worked in outside sales and my territory was huge. I spent a lot of time driving and my one vice was drinking coffee. I loved coffee. The doctor insisted that I was suddenly allergic to it. I eventually switched to decaffeinated coffee. The funny thing is no other caffeinated beverage bothered me. I just couldn’t understand why coffee would suddenly make my heart race when no other caffeinated drink did. I just accepted it, eventually, and moved on. This was at least 12 years ago now.

Read more about the diagnosis of CAD

Fast forward to now and I suddenly had this epiphany. I don’t think I was ever allergic to coffee. I believe I was experiencing one of the typical CAD symptoms that happens when I get a cold or my HGB has dropped. I didn’t know it then as I hadn’t been diagnosed and I would never have dreamt up a disease where you can’t get cold. The symptom is a rapid heartbeat, breathlessness, and fatigue. This is exactly what I had been experiencing every time I sought medical attention over the years. The thing is when I am experiencing this type of symptom if I relax for a bit, it will eventually subside.

So, I drank coffee recently and it was the greatest cup of coffee I have ever had. Zero negative effects. It may sound silly, but I get something back. I have to avoid so many things with CAD that I am so happy to actually get one thing back that I enjoy—a nice hot cup of coffee. It’s aggravating to think that doctors just didn’t understand what was going on with me so instead they just grabbed at any straw.

I had another situation where I had a weird rash on my chest, again before my CAD diagnosis. I used all sorts of over-the-counter medication, and nothing would work. Unfortunately, my doctor was unavailable, and I had to see someone else. This doctor didn’t do any tests or recommend that I see a dermatologist. She just simply explained that I was allergic and pointed out the window. I asked her, “out there?” She said, yes, I am allergic to the outside. So, I reiterated and said are you saying I am allergic to everything outside that window. She looked at me straight-faced and said “Yes.” I couldn’t believe it. In fact, I went home and laughed about it.

Here’s the problem: I accepted that answer. In hindsight, it was one of the most laughable diagnoses I had received. I should have gone to a different doctor, but I didn’t. I come to learn that rashes are common in CAD.

My firm diagnosis of CAD came when I had a gallbladder attack. The second surgeon I saw was the one who caught it and sent me to a hematologist. The first surgeon I met had me scheduled for surgery within about 10 minutes and insisted it needed to be taken out immediately.

During that meeting as he was talking, I noticed he had filthy fingernails. At that moment, I knew he wasn’t the doctor for me. I am so thankful that I sought a second opinion. I still have my gallbladder and had I not, I may still not know that I have this disease.

My point is there are many doctors out there, and some will allow you to accept a ridiculous diagnosis because they just do not know what is going on with you. I realize what I have is a rare disease and it’s not fair for me to expect all doctors to figure it out. I can tell you one thing for sure: when in doubt, get a second opinion. There is no doctor out there that should be insulted. It’s your body, your life. It took me a long time to learn that but now I speak up and I always ask a lot of questions.