My Journey With Plasmapheresis For NMOSD: What To Expect

Plasmapheresis is a complex therapy that I’ve undergone four times in my journey with neuromyelitis optica spectrum disorder (NMOSD). Every time I’ve completed a treatment, my results are phenomenal.

But what is plasmapheresis?

Plasmaphereisis is defined as "the process healthcare providers use to obtain plasma from blood. Plasma exchange is when providers use plasmapheresis to replace plasma. The process involves using a machine to separate plasma from blood and then returning the blood to the person receiving treatment.”¹ 

This definition explains what, but what is getting plasmapheresis really like?

Is getting plasmapheresis scary?

In my opinion, the scariest part of the whole treatment is the initial part of the process, getting a catheter placement. For me, the catheter line placement on my right neckline/chest area was always a scary experience during all four plasmapheresis treatments.

I always thought, "What if they don’t place the tubing in the correct place, or worse, let me bleed to death?!" I watch too many scary movies.

The catheter placement process

The team brought me to the operating room and placed the line after giving me a local injection of lidocaine. It took about 45 minutes in total (not counting the cleaning prep work). It was uncomfortable because of the position I was in, but I also felt the itchy, stinging injection of lidocaine. Funny how I get itchy in the wrong spots at the wrong time.

Once the team of doctors found the correct size catheter for the area, then continued some pulling and tugging of the line to put it in place. It’s very uncomfortable.

After the catheter placement, I started my first treatment of plasmapheresis. The hematology department performed this. Before starting the plasmapheresis treatment, I signed a series of paperwork, and the team completed blood work, specifically checking for hematocrit levels.

Because the line placement was done in one of the major veins, it was very important to take things very slowly. This was to prevent falls or anything that could cause bleeding. Infection and death were major risks in this treatment due to the nature of the incision, line placement, and treatment.

The plasmapheresis treatment session

When the plasmapheresis treatment started, the doctor, nurse, and I needed to do a lot of verification of identification. After all, we were replacing the plasma in my blood so mistakes can not be happening. Albumin was going to be used for my replacement because my bloodwork was good at the moment. If there was a time during my treatment when my hematocrit was not at a good level, then they would have used donated plasma.

They placed a big machine next to my bed, equipped with a digital screen, a twirl line warmer, and many buttons and hanging hooks. Before hooking me up, the team thoroughly cleaned the line and the site. Blood goes down one line, into to the machine which then separates the blood and plasma, discarding my plasma into a hanging bag, then return my blood through the spinning warmer with albumin.

They constantly asked how I was feeling and gave me Tums for calcium. The treatments lasted about 3 hours with an additional 2 hours of prep and post.

Feeling the difference: Measuring strength & recovery

In my experience, I’ve found that my body reacts better to albumin replacement rather than donated plasma. Very few times, my low hematocrit levels required the team to give me donated plasma while my body needed more time to produce

In total, I had 5 sessions of plasmapheresis on every occasion. Treatment was done every other day. By the third cycle of treatment, I could start feeling the difference. Of course, I was tired from what my body was enduring, but I could feel the change in me. I was going from weak to strong. I measured this through my strength when getting up from a chair and the strength in my legs.

Goodbye old antibodies

At the end of every treatment, I always take a picture of my old plasma as a reminder of my fight with NMOSD and then throw it away in the trash. It feels good to throw away those old, bad antibodies and know I’m on the road to recovery.

I understand that plasmapheresis is a temporary fix to this incurable disease, and I’m reminded every time I do this treatment. My response is always along the lines of, until there is a cure for NMOSD, I will always fight for quality of life.