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

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.

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.

its okay to be scared It's okay to be scared, but don't stop moving forward.

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


One Comment

  • Roo

    Sending you lots of positive healing energy, I too have endured the bone marrow biopsy and results wait once, I can only imagine what it’s like to have to go through it again x

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