Recently, I was asked if I was scared to have a medical procedure that would help save my life. I replied that I wasn’t.
What I was scared about was the medical bills I know I’d be incurring.
Having a chronic illness has certainly taken its toll on my work and home life. Certain concessions have been to be made in order to have the medical care that I needed and also be able to afford it. Okay, a lot of concessions.
One of several chronic conditions I have is a bone marrow disorder. This was discovered after I was having some concerning symptoms like dizziness, lightheadedness, weakness, extreme fatigue, shortness of breath, and had several instances of internal bleeding. After seemingly endless doctor visits, a few hospitalizations, and numerous tests, it was diagnosed as a bone marrow failure disorder.
Bone marrow failure, as the name suggests, is when a person’s bone marrow fails to produce enough healthy blood cells to keep up with the body’s needs.
A component of red blood cells is hemoglobin, which carries oxygen from your lungs to your body’s tissues, and returns carbon dioxide back to your lungs. Normal hemoglobin levels for women my age are 12 to 16. Safe levels are 8 to 10. My levels averaged 5 or under.
My body wasn’t getting enough oxygen due to these low hemoglobin levels. In essence, my body wasn’t functioning properly and I felt like hell.
Until a donor was found, treatment included frequent blood transfusions, which cost several hundred dollars per unit. Once a donor match is found, you start conditioning treatment. The goal is to kill off diseased cells to make room for healthy ones, and to suppress the immune system. Surprisingly, the conditioning part wasn’t that bad and was mainly nausea and fatigue. Like through most of the experience, I was more worried about the cost than I was about the effects.
‘Day zero’ was June 3rd. The stem cell infusion itself was boring and painless. It’s an IV and I watched television the whole time. Honestly, it was a little anticlimactic.
Once stem cells are infused, they travel to the bone marrow, multiplying and growing new cells. When it takes, it is called engraftment. Engraftment can take four or more weeks, at which time your blood levels will be checked to make sure you’re on the right track for your new immune system.
Why am I so worried about the medical bills when I have medical insurance? Because I am considered underinsured, which is where most Americans find themselves. I should also mention that stem cell transplants are for the treatment of leukemia and not for other blood disorders, which means my insurance company considers the procedure “experimental”. If I had leukemia, this procedure would be covered by insurance.
The estimated cost for a stem cell transplant is $800,000 including after-care. Medications are several hundred dollars a month, yet will also keep me alive. Because we are not in a single payer system, I have to pay multiple bills to multiple doctors. Yes, it saves my life but at a steep cost. Literally and figuratively.
I wasn’t scared when I was diagnosed. I wasn’t scared when I was going through conditioning treatment. I wasn’t scared when I had the stem cell infusion.
What I am scared about is losing my home and my livelihood because I can’t afford healthcare.
That is the position most Americans find themselves in. Did you know that the United States ranks worst in healthcare in the developed world?
Americans deserve better than to lose everything while they’re trying to save their own lives. It is time to change the healthcare system like other countries have implemented. There is not a single incidence of any nation that has a single payer system change their mind.
It’s like it works or something….