Sometimes we get discouraged, and maybe we even give up on ourselves. Everyone has his or her battles to fight every day. Besides being your advice columnist, Annette Gustafsson suffers from a rare form of autoimmune hemolytic anemia, a type of blood disorder. Basically, her immune system identifies her red blood cells, which deliver oxygen to cells throughout the body, as foreign substances and destroys them. She’s fighting this every day of her life. Read her story.
Before my 14th birthday in April of 2015, I developed a cough and then became very pale and jaundiced. A few weeks later, we decided to go to the doctor for a blood test. When we got the results back, she called and said that my parents should take me straight to ER: my hemoglobin (a red protein responsible for transporting oxygen) was dangerously low, 6.9 (should be at least 12.0), and she didn’t know why. That night I spent at the hospital receiving two units of RBC.
I went home thinking that it was all over, but a follow-up blood test the next week revealed a low hemoglobin of 6 again and I had to go back to the ER. It turns out my immune system was “eating up” my red blood cells for some reason. I was having to get weekly or twice a week blood transfusion because of how fast my body would destroy the transfused blood. During the months of March and June, I underwent many scans, tests, and thousands of blood tests. Finally, I was diagnosed with an extremely rare form of autoimmune hemolytic anemia. No one else in the UK or US has my condition.
Neither steroids, infusions, or immunosuppressives worked and we traveled in hopes of finding an answer. We went to Nevada (our neighboring state) and Stanford University to find a doctor who knew why my body was killing its blood. We also traveled local to naturopaths who tried cleanses, functional medicine doctors with different treatments, and other second opinions. We even went down the loop of Lyme which led nowhere.
We couldn’t find anything and I was getting worse… my medications weren’t holding up my levels anymore and I needed blood transfusions again.
So in 2017, we decided to go with the next line of treatment that we had been dreading: removing my spleen, the organ that was filtering and destroying my RBC.
After a stressful four months, I finally had my spleen removed at the end of June. Over the following five weeks I was able to taper fully off my steroid and start tapering MMF, an immunosuppressive, which could take six months. As of today, I’ve been off of steroids for nine months and I’m at half the dose of MMF that I once was.
I constantly remember that I’m better because of my faith and trust in God. My hemoglobin levels do waver and I do get discouraged, but God has me in His hand and I simply have to trust. Isaiah 41:10 says, “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” This verse helped me through the up and downs and has remained as a comforting verse in all aspects of my life.
Through ups and downs, God has walked through this frightening, long experience with her. We’re praying for you, Annette, that you would stay strong and keep moving forward! As for the rest of us, maybe we can remember to be thankful for hardships, knowing that they strengthen our faith by helping us to rely on God.
Here’s the link to Annette’s blog where you can read more about her condition: