Fight Song

During the summer of 2016, I found myself at a new level of low. I was struggling to get out of bed every morning, found myself moving slower than usual, and noticed my body breaking down in a way I hadn’t witnessed before. I constantly had a viral infection of some sort, cough/cold, chronic congestion, terrible fevers and giant ulcers on my tonsils. I had been previously diagnosed with PFAPA, which is an autoimmune disorder that causes periodic fevers, aphthous stomatitis, pharyngitis and adenitis. Whenever I would feel a flare up coming on, I would immediately take 60mg of Prednisone, cross my fingers and hope it would work. The majority of the time, I would just have to wait out the flare up period, but every once in a great while the prednisone would kick in and get to fighting. Anyway, back to my story…

After some research with my Dad, who is by far my best doctor, I decided to see what tests we could run to get to the bottom of my feeling terrible. I found an article on NCBI which indicated a T-Cell count should be done on a patient with recurrent Epstein Barr Virus. I brought this to my dad’s attention and he agreed and ordered the T-Cell count. I went to the lab the next day and had my blood drawn, we couldn’t have imagined what would the results would show. All of my T-Cells and B-Cells are perfect, they’re within range and as far as we know, they work great! As we continued down the page, we noticed a strange cell number that was severely deficient and not just slightly low, but half of the lowest in range number. I looked up the cell and found that those specific class of cells are called NK Cells, or Natural Killer Cells.

Natural Killer Cells are in charge of attacking and killing virus’ and cancer cells. In essence, T-Cells and B-Cells are the soldiers and NK Cells are the military police. They find the intruder and destroy it, that’s what they’re ‘trained’ to do. With NKD, I am at a much higher risk for breast cancer and Leukemia, as well as a number of other malignancies.

I immediately scheduled an appointment with a Hematologist/Oncologist and prepared my journal of medical records and medical history, this was September 2016.  I had two visits with the Dr. H who informed me that NK Cell Deficiency is extremely rare and that we would have to have three consecutive deficient tests to actually diagnose me with NKD. During my second visit about a month after my first, Dr. H confirmed that my second test was once again severely deficient and we would need another test after 6 weeks. I asked about the dangers of NKD and what I should expect since my number were leading me to that specific diagnosis. “if it’s a true NKD, you have about 5-7 years.” I left my appointment feeling devastated and decided in that moment I would just live my life, put everything but the wedding, on the back burner and deal with it at a later time.

Fast forward seven months and the infections have been constant, I mean, like no days of relief. I decided to have another T-Cell count done which showed my numbers had steadily decreased once again. I immediately started the referral process to Stanford and UCSF and within two days heard from UCSF. They scheduled me within two days and I spent over two hours with my new immunologist and found that she was very knowledgeable in NKD. She answered all of our questions, of course I dragged my mom with me to my appointment, as she has been my biggest advocate. We concluded the appointment with hope and a ton of blood work.IMG_2005

A week later my number were in and had once again decreased, but this time to a scary number I didn’t know was possible. I went from a forty-nine, to a twenty-two; my body was terminating my NK cells faster than we had expected. Two weeks later, we got in another result that was equally as devastating. Any and all NK cells I do have left, don’t work, at all. In that moment I realized my time was precious and I would try and make the most of my life.

This past Thursday (6/22) I had a follow up with Dr. A, who informed my mom and I, that there is currently no treatment option for Classic Natural Killer Cell Deficiency. Dr. A informed me that she was not giving up on me though, she was going to continue to follow me in hopes that there will be a clinical trial or study available aimed at patients with CNKD.

Thanks for reading!

Xoxo, Julie

2 thoughts on “Fight Song

  1. Thank u so much for sharing! I have to say I can’t express to u how much this has made me devastated! I know this might be a surprise because I’ve only known u for a few years But I really love u and your family! I drive from clovis to your dr office because I trust you guys with my children! since u started working for your dad I love that u r just so good reambering my children’s names! And u r just so amazing at your job! U put a lot of your time into caring for your patients. When u told me you were dieing the first thing I thought was no this can’t be!?! I’ve been so emotional over this! I really look up to u!!! U r so amazing ! Still going to work!! Your smile makes my family so happy! My children cried today while I was watching your videos. I’m sorry I’m not trying to make u feel bad 😔 My family and I will put u in our prayers!!!! I’m praying that u can find a way out of this !!! For u and your husband and your parents!!!!! I believe that god can take away this terrible thing that is taking over your body!! Keep posting videos I think this will help not only u but others that r going through this!! My kids wrote u get well cards ♥️ we will bring them to office next Friday! by the way your husband is soo lucky to have a wife like u I’m so happy he still married u!! True love si amazing. Sorry for all the errors in this lol I write long essay with no punctuation half the time lol
    P.s u r like the only one I know that can sport that face mask and still look amazing 😊

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