I Know Remission Isn’t a Guarantee

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Having been previously diagnosed with an immune deficiency disorder, Denée was no stranger to fatigue and stomach issues when she started feeling sick in December 2020. But after her symptoms worsened, and she noticed she looked jaundiced, she went to the doctor, and was soon admitted to the ER. There, she was diagnosed with warm autoimmune hemolytic anemia (wAIHA), which prematurely destroys healthy red blood cells, resulting in fatigue, muscle weakness, dizziness, palpitations and shortness of breath. Fortunately, after treatment with steroids, Denée entered remission in March of 2021. She spoke with AllStripes about missing her kids while in the hospital, her gratitude for being in remission and what makes her so eager to contribute to research.

In December of last year, I was getting ready to take one of my boys to the dentist to get a tooth pulled. I looked in the mirror while I was getting ready, and I was like, “Man, my hair looks really white.” I highlight my hair, but I thought, Do I look jaundiced? I called my husband in the bathroom. I was like, "Hey, is it just me? Am I crazy, or do I look a little bit jaundiced?" And he's like, "No, you kind of do." That's when the biggest red flag went up, because that's never happened in my whole life. I went about my business and took my son to the dentist, and as soon as I got home, I called my doctor's office. 

I was seen that afternoon. My doctor did a urine culture, a physical exam and then had labs drawn. Initially she didn’t see anything. She knew I was trying to avoid going to the ER because of the pandemic and my immune deficiency. She said she’d call once she had the results. Well, sure enough, I got my boys to bed, and she called me. She was like, "You've got to go to the ER. You have a number of labs that are out of range, and it's concerning." My hemoglobin was low. My liver enzymes were elevated. She didn't know exactly what was going on, but it was very concerning. My background is in the medical field. I, of course, was alarmed too, because I knew at the very least that a low hemoglobin meant something was definitely wrong.

I packed up my stuff, went to the ER. I had a pretty good feeling I was going to be admitted, and I was. They admitted me that night. 

My hemoglobin dropped another point in less than 24 hours, because they checked it again at the ER — it went from nine to eight. They thought it was my gallbladder. I did have gallstones, but my hemoglobin continued to drop. They watched me closely for two days, and I became very, very jaundiced. I felt terrible. They did a Coombs test, and that’s when they diagnosed me with wAIHA. My attending doctor was wonderful. She knew what she was doing. I was just really, really fortunate. It was so scary.

They started me right away on high dose steroids. I had a total of seven blood transfusions while I was in the hospital — I was there for a week. I had headaches, I could barely get out of bed. They had to put me on a heart monitor because my heart rate would skyrocket, because my blood volume was so low. It was the scariest thing I've ever been through in my life. I didn't know if I was going to make it home.

Because it was a pandemic, nobody could come see me. My husband had my boys. We have twin boys that are seven, and happily, he was working from home. My mom and stepdad live in the same city as us, and they were able to take turns with the boys. 

There were so many things that were hard about it: not getting to see kids, worrying about how they were going to react to it. 

But they handled it all really very well. And I give my husband and my mom credit for that, because they kept them going and kept them busy. FaceTime was a life saver.

I’m in remission now, but there is a risk of it returning. I’ve been in remission since the end of March last year, so I’m coming up on a year. I’m not on steroids anymore, but I still take the vitamin B12 shots once a month. My understanding is I'll always take that to help boost my hemoglobin. 

The only thing I have to do now is just have my labs checked. I think it'll be either every six months or every other year, depending on how long I've been in remission. I know I've been very fortunate, because I know a lot of people with wAIHA are not in remission, or struggle to stay in remission. It's staying in the back of my mind, because I wonder if at some point it will come back. I pray that it doesn't.

I trust my doctor. I have faith in what she has told me, because I'm in remission. Even if I wasn't, I don't want to stray from what she's telling me. I think it's well-intentioned, but I find that sometimes people want to provide homeopathic suggestions, or say, "Oh, try this supplement, or this vitamin." For me, it's not helpful. It's appreciated because they care. But most of us already are doing everything in our power to take care of ourselves to the best of our abilities.

For any rare disease, the more information that any doctor has available to them to research and study, the better. To be able to provide my information like that makes me very happy. 

If I can do anything in any way to help further the research for this disease, by all means, I’ll do it. I'm happy to contribute my records for research, because if it helps somebody not go through this someday, then that's wonderful. I wouldn't wish this on anybody.

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