A little health update: Dealing with mysterious low white blood cell counts

Having a chronic illness can be complicated and full of surprises. After being diagnosed with CVID, I thought that was it – I do my plasma infusions and go about my life.

Unfortunately, like many other patients with primary immunodeficiency, I have faced some other health complications. After discovering swollen lymph nodes all over my body a couple of years ago, I was also diagnosed with a lung disease called GLILD. Luckily, the treatment for GLILD worked! I got Truxima and took Mycophenolate for about a year and a half.

I thought that my GLILD diagnosis meant that I was in the clear for a while, but unfortunately I was wrong.

Facing a new issue

A few years ago, my white blood cell counts were lower than they should have been. I talked to a hematologist regularly and went through some tests, but the only reason found was that my spleen was enlarged. I was somewhat relieved because an enlarged spleen is way more ideal than other reasons for low white blood cells.

At that time, my doctor ordered a bone marrow biopsy to rule out cancer and certain blood disorders. I was sedated for this short procedure, but it was still extremely uncomfortable and I felt a lot of pain. I wasn’t prepared for how excruciating it was.

After the biopsy, I anxiously awaited results, but it showed nothing. I let out a sigh of relief knowing that I didn’t have cancer.

For a while, my white blood cells went up. They were at fairly normal levels for a couple of years.

Last summer I started talking to a new hematologist at University of California San Diego, who said that my low white blood cells may be due to a medication that suppressed my immune system. This medication – Mycophenolate – was prescribed to me for my lung disease, GLILD. It is known to lower white blood cells.

However, I stopped taking Mycophenolate in November of 2023 because my lung disease had improved so greatly. After I stopped taking the medicine, I thought my white blood cells would increase.

Unfortunately, that was not the case. I went in for labs a few weeks ago and the results were not good. My white blood cells were still dangerously low and we needed to figure out what was causing it.

Re-living a traumatic experience

My doctor gave me news that I was absolutely dreading – I would have to do the bone marrow biopsy, again.

I wanted to say no. I wanted to just ignore it and hope it would all go away. But I can’t do that. I have to prioritize my health and try to figure out what is going on in my body.

My biopsy is scheduled for the end of March. That is the soonest I could get it done.

Of course, there are so many thoughts swirling around in my head. What if it hurts again? What if the results are bad? What if I have cancer?

Last time I got the biopsy, I fully believed that the news would be terrible. I was so ridden with anxiety and fear that I basically prepared for it. But in the end, worrying got me nowhere. It did nothing but put more stress on my body.

Awaiting answers

For now, I find myself in yet another waiting period. I am trying to fight the feeling that my life is on pause until I get these results back. I know that I need to try to live to fullest, no matter what the circumstances are.

Luckily, my doctor prescribed a daily antibiotic and couple of medications to help me fight off illnesses in the meantime, since my immune system is so low.

Until I know the results, there is nothing I can do – it is out of my hands! I will wake up every day and remind myself that I am doing everything I can to find answers. I can’t control what is happening with my body, but I can control my stress and anxiety levels.

I hope to journal, hang out with friends, stay active, and keep working towards my goals. I also just had my first meeting with a therapist from Talkspace. I truly believe in the power of therapy, it helps to be able to talk to someone about my feelings during this time.

Accepting the reality of lifelong illness

If I think about my disease for too long, it makes my head spin. It is so overwhelming to think that I will be dealing with this for “forever.” I want to be a normal 24 year old. I don’t want to take three medications a day and infuse plasma into my body every other week. But this is it. This is my life. And I can either accept it and find joy in every day, or I can let it ruin me.

I will not stop fighting to be happy. I will not be taken down by this.

Thank you to everyone who has supported me along my journey so far. I have been met with so much love and support. I have gotten to connect with so many other PI patients who experiencing the exact same thoughts and feelings that I am. For that, I am so so grateful.

Remember to take care of yourself and listen to your body. It’s okay to be scared, but don’t stop moving forward.