Plasmaexchange 3.0

Plasma-exchange. 

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 wasnt...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 wasnt...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.

Love,

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: http://en.wikipedia.org/wiki/Plasmapheresis. 

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. 

Familiar

It's like it was just a year ago I was here.  

Hospital bed, typing on my iPad, rehab schedule. 

(Love my gma blanket? Perfect accessory I know)

Oh wait, I was. (:

Yes, I'm back at Mercy Rehab for hopefully a short while. They were very excellent last time with helping me "get back on my feet" and were hopeful for the same this time around. Just a shorter visit. 

I'm not entirely enthused to be back.  But it feels very familiar as everyone seems to remember me (a good or bad thing verdict still out) and I annoy the food crew with my very specific meal arrangements. I'm sharing a room this time and am facing the front side so get to do a lot of people watching instead of water gazing. Should be fun. 

Mercy has this great program where you can send little love notes to patients and it greatly made my days last time. If you'd like to send a little note of encouragement, visit https://ecards.upmc.com/getwell.asp Room 7005-2. 

Much love! Eliz

The Severity of my MS is Helping the Economy.

My mom homeschools the three youngest brothers who are at home (although they particpate in a lot of public school activities...they have the best of both worlds...said from the girl who went to public high school).

Each day one of the brothers picks a "word of the day" from a SAT Word Book and it is then written on a board on the wall.  Each time a person uses the new word in a sentence gets to put a nickle in the "Chick-fi-la" bucket, which will eventually be used for a dinner out on the town.  #wesofancy

Severity is one of the first words I saw when I got home from the hospital today.  Nickel for me!

Yes, the severity of my Multiple Sclerosis case is keeping the Multiple Sclerosis Department at UPMC, my Doctors, health insurance and many drug companies in business.  While I'd much rather be keeping businesses like Massage Envy, Clinique, Michael Kors, Ralph Lauren (to name a few) in business, I am helping the economy.  #silverlining

As most of you know if you've followed the past couple of posts from The Sparkled Life, the past few weeks have been not fun, at all.  I've been very sick.

What thought was a pseudo-relapse due to stress actually turned into a blood result that came back with anti-bodies showing that my body was rejecting Tysabri.  Tysabri was the infusion that we had so much hope in, especially since it helped with lesions in the brain, my curse.  But, my body decided no.

The problem with this story is the blood result came back just hours after I had my April infusion.  So I've suffered the past however long with a drug in my body I'm allergic to.  No wonder its been ugly.

Interruption:

Remember when I mentioned that one Thursday when I went to the hospital and it was a day that made it on to the Top 5 worst in my MS career?  Well, what made it qualify was an "administrative" problem that occurred between my health insurance and switching to COBRA.  

I was assured that there would be no lapse however, once arriving at the hospital, we quickly discovered this was not the case.  And it was due to an "administrative" problem.  Please excuse me while I have trust issues with insurance companies, brokers and the like.  

This rant comes full circle.  For this "administrative problem" caused a 24 hour delay in all blood-work and testing.  A precious 24 hours that cost me being infused with a drug that I'm allergic to but didnt know because of the hour lapse in the blood-work results.  

Thank you insurance company and brokers, kindly.  

So today.  I first must say, I really appreciate my MS specialist doctor.  He is very smart and he really cares about me.  Before, yes, I might have been just an "interesting" case but now, after all our meetings, I've become a patient he just wants to be "boring" as he puts it.  He wants me to get better.  

And today, as he started his notes, he said "Let's talk MS long-term..." and trailed off in thought.  Coming back, he said in an under the breath kind of a way, "usually we dont have this talk until much later".  Usually, Tysabri is the right answer.  Usually, its a good right answer.  But my body, strongly, said no.

So here's the summary:

My body didnt take to Rebif (thus the entire class of interferons); my body is allergic to Tysabri.  Not many options left.

However, a new and positive drug has JUST come out on the market and is an oral tablet and has promising results.  Further encouragement to share my story, to create MS awareness.  This tablet was only approved a few weeks ago.  And here I am, in need of a new medicine, a stepping stone before I turn to the high risks of such medicines as chemo.  

I dont like that I have MS.  But I can see that God is using the awareness, The Sparkled Life, for good.  Let this be the proof.

So, we will wait the weeks it takes to get a high cost drug approved my health insurances (blah) and then we will have hope that I will eventually go into remission.

In the meantime........

My "I hate steroids and life right now face".  And yes, I wear that sweater a lot.  Its the perfect go-to from Ralph Lauren.

I'm still suffering from pain, tremors, the usual.  Even though I swore of steriods forever, we are giving it "one more shot".  But a short one.  3 days of steroid infusions and then no taper.  After that, depending on how I'm doing, we will discuss Plasma Exchange.  

I have a feeling this route also has to do something to do with health insurances and drug companies.  I wont digress on that.  That and the fact there arent really any other options for relief.

So...beware world.  Steroids make me very.....emotional.  And you gain weight no matter what you try or not try.

My steroid photo-shoot...1, how I really feel face, 2, Mom forcing me to smile, 3, Laughing because we're having a photo shoot in an infusion center, 4, the ugly steroids.

They've already kicked in.  Coming home from the hospital Mom had the pleasure to hear my piece on Pittsburgh drivers.  When stopping at Trader Joe's (for my favorites and roses...gotta love Mom), I even let a person who was staring at me in the old person motor cart, arm bandage and overall "I'm sick" appearance know "its so cool to stare".  I'm pretty sure I saw a smile.  Or at least that's how I'm telling the story.

The many faces of steroids.  Am I being dramatic?  No, they really do make me cray.

The next two days of steriods will actually be done in house (#princesstreatment).  They'll set up an IV infusion center and I'll just chill with the traveling nurse for an hour or so.  And we checked ahead of time, insurance covers this.

Ending words:

• There is always a silver lining.  You just have to look for it.
• I havent had steroids since having the disability of dysarthria (my speech disability).  So this should be interesting...how the words come out.
• Pray for my family...they will need it.
• Help create MS Awareness and do not give up hope.  
• Hope.  I believe in such a little word SO hard and only can remain optimistic that it believes in me as well.  I need it to.  

You all are wonderful.  Fellow MS Sparklers, MS Sparkler Supporters, random readers who stumble across....thank you.  Be thankful for your health.  Hope daily for continued sparkle. 

Love always, Eliz

PS: I woke up to bed head silly puppy this morning.  I love him.

Man down!

Sunday was an eventful day, to say the least. 

To begin, I actually had an outing....I made it to church.  Wheelchair, myself, MK shoes and all...we did it.  It was a beautiful day.

 

A few hours later, we had a man down incendent.  My mom had a little fall and twisted both her legs/ankles/feet.  Poor lady...at least she had good shoes on!  Though we procrastinated our Saturday pedicure and are now really regretting it.

When a man goes down, especially when this "man" is the mom, it can be very difficult for the household.  We (the kids and dad) are learning quickly all that she does for us.  Mom is learning quickly how hard it can be to just chill.  

Mom needed a break.  I just wish is was more at a tropical location instead of in our "sick chair" in our living room with her legs up.  At least we have a nice tv.

But she is healing.  And we have a GREAT community who has stepped up and arranged for dinners for us for the next week or so.  (I wont lie...when this first happened, my brain starting running a list of all the dinners I could pull from a crock-pot, frozen trader joes and how many times we could order pizza without seeming ridiculous.  So when my mom said "Elizabeth, you dont have to worry about cooking....everyone has it taken care of", I sighed the biggest (silent hah) sigh of relief.  THANK YOU...really!)  

We all hope Mommy starts feeling better soon!

I had my infusion on Monday.  My friend drove me in and the infusion center was extremely quiet, which made for a relaxing few hours.  

 The intersection I know too well.  UPMC central. 

 Infusion center time...with my drugs, sperry shoes and sparklies.  (Blog update later on where the rings are from...received a lot of compliments with regards to those)

I started this blog with the hope of ending it with the message I received this morning:

That this incident was a pseudoexacerbation due to stress.  With a combination of drugs, stress relief techniques, stretching and PT/OT practices, I will be back on my feet in no time.

However, I just received a phone call from the doctors.  Let's just say....I cant catch a break.  

I am extremely tired and wont go in to much detail now.  For those close and personal, know its not too serious.  Just another extreme stepping stone.  

Prayers and love, Eliz