Pancytopenia: My Near Death Experience

by | May 31, 2019 | Lupus Blog | 0 comments

Many of you know I’ve been sick with a Lupus flare for the last few weeks.

It got a bit more serious when despite the medical intervention for the Lupus flare, I was spiking fevers on a random basis.  

I was fatigued, sick, and in pain.  I can’t explain it, but I didn’t feel like myself.

With my past Lupus flares, once we began to manage the Lupus, my body would bounce back in a day or two. Then I would focus on getting my body healthy again.

This time, the fever persisted and I became progressively sick in ways that affected my ability to perform my normal duties.

I went to see my Rheumatologist and verified that my blood count was trending downward.

The antibody activity really didn’t show disease activity, but he assumed it was a minor Lupus flare.

I was sent home with 10 days worth of prednisone treatment.

I began to feel better but still felt something wasn’t quite right.  

So on May 22nd, I went to the ER.

I had excruciating headache, belly ache, fever, and general malaise.

The initial labs showed dangerously low white blood cell and neutrophil count.

They tested my blood for cultures. They performed CT scans, more blood tests, and bone marrow biopsy.

Finally, the doctors verified that I had a staph infection in my blood and I started IV antibiotics. But because I had no immune system, response to the antibiotics took some time.

I was considered septic.  

It took 6 different antibiotics before my fever broke and I began to feel better.

When your body has no white blood cells and neutrophils to help you fight the bacteria, the only defense it has is the fever.

My platelets, red blood cells, hemoglobins, and hematocrit dropped significantly everyday I was in the hospital.

I was so sick that I had peace about death.

My Rheumatologist verified that it wasn’t the Lupus causing this, it was the infection.  But they still needed answers about my pancytopenia.  

What is Pancytopenia?

Pancytopenia occurs when the bone marrow stops producing red blood cells, white blood cells and platelets.  The cause of this was what the doctors needed to find out.

Was it leukemia, lymphoma, or aplastic anemia?

I was in the hospital for 9 days total. On the 8th day, the day I was supposed to be discharged, my platelets dropped to dangerously low.

I needed a blood transfusion.

They monitored me for another day and when the platelets, red blood cells, and neutrophil counts were trending up, they discharged me.

I’ve been nursing myself back to heath at home.  But with such a low immune system, I am to control my environment and avoid sick people or crowded public places.

Sick Care vs Health Care

Many of you know that I see a deep problem in our so called healthcare system.

Conventional medicine is essentially sick care. They are extremely good at saving lives but not so good at maintaining or optimizing health.

My doctors in the hospital saved my life. 

From the ER doctor, Internal Medicine doctor, Hematologist, Oncologist, and Rheumatologist, I could not ask for a more qualified group of professionals to get me from dangerously sick to stable.

I am eternally grateful.

However, the antibiotics, various meds, and infection to my body have consequences.

So this is where I am passionate about Functional Medicine and taking responsibility for your own health.

The doctors’ role ends with infection control, cancer treatment, symptoms management, etc.

Health is something we’ve got to create on our own, and our programs serve as the bridge to fill the gap between sickness and health.

The Effect of Plaquenil

My amazing Rheumatologist was puzzled with my presentation and told me that there’s been various cases with Plaquenil toxicity causing pancytopenia.

We don’t absolutely know if it’s the Plaquenil, but we do know my blood is trending up after stopping this “harmless” medication that is prescribed to so many Lupus patients.

It’s the one medication that I took regularly to prevent Lupus flares.

If it is this that suppressed my bone marrow, then problem is solved with discontinuation of this medication.

We ruled out leukemia, lymphoma, or any other types of serious conditions.

I have lots of follow up doctor’s visits to monitor my progression and to decide on the next plan of action.

But I did want to share my experiences with you as I go through them.

I have not fully processed my experience in the last 14 days, so as I gain more insights that may be of benefit to you, you bet I’ll be sharing more.

This week, I’m back at work.

My doctors advised me to “pace myself” so my hours are shorter to accommodate all the doctor’s visits.

So this is why you haven’t seen me in a while for Yoga and Q&A.

But I’m back and will share the good and the bad of this.

The Necessity of a Rebel Mindset

I truly believe your prognosis is largely dependent on your mindset. 

If you are sulking in negativity and have a victim mindset, you risk losing the battle even before you start. 

I encourage you to read my blog on mindset here.

Despite what I am currently going through, I am extremely thankful for the opportunity to be back, serving you and my patients.  

I am thankful for my kids, my family, friends, and my team.

I’m also thankful for all of you who read our blog and the opportunity to share experiences to help you to shift your mindset from victim to rebel.

I want to be the example of what is possible despite all the challenges I face as I go through them.

I truly believe what doesn’t kill you makes you stronger and that we always have a choice to make lemonade out of the lemons that life throws at us.

So I hope this blog encourages and uplifts you. I hope you find courage to choose to create health for yourself.

Thank you so much for listening, I’ll share more insights with you as they reveal themselves to me.

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See you next week and have a wonderful weekend!

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