Living with Anemia and Other Stories

“Let me tell you a secret,

Put it in your heart and keep it,

Something that I want you to know.

Do something for me

Listen to my simple story,

And maybe we’ll have something to show.”–George Michael, Heal the Pain

It’s been two years and two days since the saga of my MDS began. There have been a lot of ups and downs through that time. During my first hospitalization for anemia, I was just terrified–all the tests they were doing were looking for internal bleeding. (Not what you want to hear.) Then there was relief, when they thought my B12 deficiency was the cause. Next came a resurgence of anxiety when that turned out to not be the case, and the tests became both more invasive and scarier to contemplate.

Once the diagnosis came in, and I learned that a Stem Cell Transplant (SCT) would be the cure, things settled down for a few weeks. For a brief time, I felt like I could get through this; I’d have the transplant and be back to my old self again. (Spoiler: it wasn’t that easy.)

The first major blow came about six weeks after the diagnosis. I was a unicorn–MDS is a disease of the elderly, and so rarely impacts the young (or at least middle-aged), that insurance companies have largely not written rules for what to cover in a situation like mine. It turned out that my insurance wouldn’t cover the transplant until my risk factor for it imminently becoming leukemia was higher than it currently was. (In America, our insurance dictates your healthcare, not healthcare professionals. That’s something conservatives really hope you don’t figure out, and certainly will never address.) So all I could do was wait.

Waiting was hard and brought on its own set of anxieties. There was always the chance that it could turn into leukemia before they could do the transplant. For another, the older I got, the more potential risks and potential complications there would be when having the transplant. Added to all of that was a constant rollercoaster of ups and downs with the anemia. Some days, I might be feeling almost normal; others, I’d hardly be able to walk around the house.

Acute anemia is not fun. Given my sex, height, and weight, my hemoglobin should be around 15 g/dL. Where I actually have been over the last two years is in the 5-8 range most of the time, with occasional bumps into the 8-10 range. When your body only has half (or less) of the blood it needs, there are all kinds of adverse effects. Your heart rate and breathing tick upward, sometimes quite a lot if you exert yourself even the slightest; it feels like running on a treadmill all the time. You get muscle cramps. You suffer fatigue, headaches, and other symptoms. Living day-to-day involves constant management of your energy and activity. And, of course, all of that has its own mental and emotional toll.

When you’re in a situation like mine, you just look for ways to get through, and humor has often been one of those ways for me. Weird Al’s Living with a Hernia, a parody of James Brown’s Living in America, became Living with Anemia in my head. Countless transfusions, including one on Halloween, led me to joke with the nurses that I was the vampire Lestat or an overgrown mosquito. Whatever works!

Last year, through a combination of America’s unconscionable health insurance industry and the monstrous policies of the current administration, I lost my coverage. I scrambled to find something else, and although it’s nearly five times more expensive than what I had before, at least I have it now, thanks to the Affordable Care Act. (No thanks to the GOP who continue to try to destroy that lifesaving piece of legislation. It may not be perfect, but it is a damn sight better than what came before it.)

Despite the stress of losing my insurance and the mad scramble to get new coverage, it turned out to be a blessing in disguise.

Simaltaneous with losing my coverage, the treatment for my anemia changed. The initial treatment I’d been getting since May of 2024 was no longer working. The new treatment was both mind-bogglingly expensive and very hard on my system, particularly through the first two months or so. In an eight week span, I needed ten transfusions to keep me alive. Just as the first of the year arrived, I contracted CoVid, which not only laid me up in the hospital for several days, but also necessitated four more transfusions in a forty-eight hour period. After hearing about all the vulnerable people we needed to wear masks to protect during the darkest days of the pandemic, I was now one of those people. I had understood and consistently masked during those days; I now had an appreciation for it on a whole new level.

About a week after I was discharged, I had my scheduled appointment with the specialist in charge of case, and who would be overseeing my eventual transplant. With the change of insurance and the complications with my anemia treatments, he thought he could make a case to the insurance company. He didn’t seem particularly optimistic that they would approve me for the SCT, but he would try anyway.

Just over a week later, I received a call from his office. The insurance had approved the Stem Cell Transplant, far faster than I would have ever imagined. There was finally hope on the horizon–but I still had a long road ahead. There are many tests I have to pass before the SCT, and though it has only been two weeks since I got the call, those tests have already begun.

I had no idea when I started this blog that the transplant was so close. I thought it was probably still years away, not mere months. The ordeal of the SCT will be long, and the recovery longer still. But I’m finding that writing about it is starting to help. Thank you for reading, and for your support. There is much more to come.

2026-02-07