Thursday, May 15, 2014

Plasmaexchange 3.0


Aka as that time you lose all your blood.

Or rather, all your plasma in your blood.

Back in December 2013 I started to experience severe pain and lack of use in my arm.  I went to my neurologist thinking it was MS.  It was a slipped disc.

After a cervical spine surgery in January and a few weeks of healing, I was doing pretty well.

Until one day the pain and lack of use came back.  I went to my orthopedic surgeon thinking it was another slipped disc.  It was MS.

This back and forth way of living makes me feel like a tennis ball.

On top of all this fun Im experiencing vision issues (blurred vision), which is very common with multiple sclerosis yet something I had not experienced as of yet.  Optic Neuritis is the name.  It was only a matter of time before this symptom jumped up.  

(PS: looking at a computer screen is extremely difficult so please excuse any misspellings and such.  Im writing blind ladies and gents.)

After a meeting with my MS specialist on Monday, we decided to take the route of Plasma-exchange, or in fancy words, plasmapheresis

What is common with multiple sclerosis is that when a patient is struggling with a relapse, they will do a round of high dose steroids.  

But we all know I'm not common. (:

Steroids have never helped (or very little) with my MS.  They do a great job at making me irritated and gain weight and have insomnia though.

Because of this, we have sought out Plasma-exchange in the past to help me when my symptoms are high.  This session is 3.0 because I've had it twice before, June 2012, May 2013, and now.  

(We might as well schedule it for next year this time too.  PS researchers...I think this is a sign that the cyclical year has something to do with MS).

What is plasma-exchange?

Well, in my uneducated, non-medical words, you have a needle in both arms, with your arms laid out at your sides.  One of the arm needles pulls out blood (in this arm you wear a pressure cup as well as squeeze a ball for the full time to get your blood pumping), puts it in this big, sometime noisy machine, cleans out your blood's plasma, puts in a mix of synthetic and donor's plasma, passes through a warmer, goes in all this tubing across your body, and in through your other arm.

(the Team Edward shirt was a must...we have to add the humor to life)

It lasts anywhere from an hour and 45 minutes to two hours and 45 minutes.  I do 5 sessions, every other day.

The most difficult part of the process is finding strong enough veins for the needles.  Yesterday's procedure was very successful, with both veins remaining tight the whole session.  Often times my veins collapse but we're remaining positive this round.

So what are the benefits?

According to wikipedia, plasmapheresis is an important use in the therapy of autoimmune disorders, due to the rapid removal of disease-causing autoantibodies from the body's circulation.

In my again, non-medical terms, it gives your body a fresh detox in order for it to heal.  With MS (and lots of other autoimmune disorders), our bodies find themselves under so much stress during a relapse, not providing it an opportunity to heal.  Plasma-exchange gets rid of any bad things in your blood so that your body can focus on what is important at that time: healing.

 It is not a very common procedure in the US (very common in Europe and Japan).  I'm fortunate because UPMC (my hospital network) has a plasma-exchange unit. And even more fortunate, I adore the ladies and the dr that work in this unit.  They are so nice and calming.  I'd do plasma-exchange just to come visit them! (ok maybe I'd rather just bring in coffee...but that shows my appreciation).

Really the hardest thing about this whole story is that the plasma-exchange unit is in the hospital where I've spent the past two Junes in rehab.  I get sick to my stomach just thinking about it.  Granted, my weeks in rehab were very productive and I am entirely grateful for the experience and the hard work accomplished.  And yes, as I walked (WALKED) into the hospital I felt a sense of "hell yeah" as I realized how far I have come.

But what is truly terrible about MS is no matter how far you come, something else will happen.  Yes, I'm walking but I cant see.  Yes, I'm talking but I cant use my right arm.  It makes me want to cry because I just want a period of time where everything is just flat, normal.  

So I find myself with two options: sitting around waiting for MS to give me a break, or work like hell to live life fully, with MS in tow.  

I think I'm choosing the second one.


Ps: have you tried plasma-exchange?  Send me an email or leave a comment with your story!

 This wikipedia page does a great job at providing more information on the process and the  benefits:

If you have a difficult time with-standing steroids or have not been able to find any relief, I highly suggest asking your doctor about plasma-exchange.