New year brings new experiences…like plasma exchange

Happy 2012! And in a few days on January 23, I shall say, chuc mung nam moi! as it will be the Lunar New Year, the Year of the Dragon.

The year of 2012 was off to a rough start for me. In November, I had my usual Rituxan treatments, but for some reason unbeknownst to all, my vision worsened a little after the first round. The doctor wanted to wait to see if my vision improved after the second round of Rituxan, especially since I was also receiving IV steroids (to stave off any possible allergic reactions to the Rituxan) prior to each chemo. Alas, my vision wavered back and forth from its previous baseline to worse again. Eventually, I was ordered to take 160 mg of Dexamethasone. Swallowing 20 little blue pills twice a day for five consecutive days was not the hard part—it was all the side effects that came alongside it: insomnia, restlessness, bloatedness, intense voracity of the appetite, and last but not least, moodiness (my husband may want to argue that I should stop blaming the steroids for this). Needless to say, I am at the heaviest I’ve ever been in my life, and I am not the least bit un-moody about it. I guess God is giving me sympathy weight gain with Erin…

I am ever the optimist though, and I must say all the restlessness and insomnia and insanity paid off because my closet was on its way to becoming the cleanest closet of the century. Instead of going to bed at a decent hour, I would methodically go through all our shirts and pants and decide which should be donated and which should be hung up and where. I even went through all of John’s shirts and my cardigans and buttoned the top button so as to keep them neatly on the hanger. And so all my neuroses come out with the steroids…

Steroids also tend to make me nest. That is, not only do I organize the closet, I start organizing and reorganizing the house. I recall a previous year when the steroids made me take apart my entire bookshelf and re-stack the books according to genre and then alphabetical order by author’s last name, first name. This time, since my bookshelf has remained in order, I decided to go crazy and shop for cute butter dishes, fancy floor cushions, and fake plastic fruit to display on the buffet cabinet. Yes, that’s right, I spent John’s hard-earned money on Granny Smith apples that we can’t even eat.

But that’s what made me happy, and John so kindly let me slip on by with my artificial bushel of artificial apples just because he is a good husband and knew there are just some things in life not worth picking a bone with (like me on steroids).

After the steroids had all been swallowed, the doctor decided to order five rounds of plasmapheresis or plasma exchange (which we’ll call PLEX for short). I had never had PLEX before though I’d heard it’s been effective in treating acute Neuromyelitis Optica/NMO attacks. Most patients have to check into the hospital as an inpatient and get a central line inserted in order to get PLEX. Dr. Greenberg, however, knew to ask me the pertinent questions that would determine the PLEX route we’d take. He asked me: (1) how much worse did my vision get from baseline; and (2) has my vision change affected my daily activities, and if yes, how much? I said: (1) 10 to 15 percent, and (2) not much at all. Together, we decided the optic neuritis was not serious enough (I know what you may be thinking—that all NMO flare-ups are serious, but you must understand that my vision is so poor already that the minimal change I experienced wasn’t that cumbersome) to call for such an invasive and inconvenient procedure such as getting it done with a central line. And so Dr. Greenberg said we would only move forward with the PLEX if he could find a clinic in Houston that would do it peripherally as an outpatient procedure.

He made some calls, and the next thing I knew, I was sitting in the Blood Donor Center at Methodist Hospital in Houston’s Med Center getting both arms poked with needles. How ironic is it that my previous neurologist whom I was under the care of for years used to take forever to treat me, and I often complained about his lack of timeliness. And now that I’m Dr. Greenberg’s patient, he moves so quickly that I barely had time to mentally process the idea of PLEX and thus had a few mini-breakdowns because, frankly, I just didn’t feel ready to encounter a new procedure.

I was assured by both the medical professionals and friends that the PLEX would be beneficial with minimal risk so I should not worry. But having to go in every other day for 1.5 weeks to get two needles put in each arm and then sitting there not moving for 2 to 4 hours and having a pressure cuff tighten the hell out of my upper arm all the while having to squeeze a ball in the same hand even though my fingers were going numb were enough to drive a person to tears. And that’s exactly what happened during one of my PLEX rounds.

Regardless of the bumpy road, I’m glad to report my last PLEX (for now) was yesterday. I survived them though my arms are quite banged up. But that’s how life is—we get knocked around a lot, and what I learned from all this is it’s okay to cry and get angry and yell and feel sorry for ourselves if only for ten minutes a day. I learned that we need to honor our raw emotions, that we’re not loving or respecting ourselves if we are not honest with ourselves. And then once we let it out, we must pick ourselves up and move forward, even if it just means putting one foot in front of the other and taking it a step at a time, minute by minute, day by day.

So with the Year of the Dragon just around the corner, a new era is on the horizon. Let’s make the most of what we’re given, be thankful for what we have, and remember that we are still human: embrace the humility.

And with that, I leave you with some pretty photos of Christine’s PLEX 2012.

Getting my plasma on

4 Comments

  1. Leslie

    My daughter who is 6 was diagnosed with NMO. I don’t know anyone with the disease. She never complains of any pain or anything. Do you think she has just gotten used to it and not complaining in fear that I would start crying again?

    Comment by Leslie on February 6, 2012 at 6:27 pm

  2. Christine

    Hi Leslie, only your daughter (and to some extent, you) will know how your daughter is feeling. It’s important to relay to her that she should be honest with how she’s feeling no matter what. Perhaps it would not be a bad idea to look into finding her someone to talk to, e.g. counselor or child psychologist. That way, she could learn to process her own feelings and be truthful about them without having the anxiety of upsetting you. The diagnosis of a life-changing disease calls for support for everyone involved, including yourself.

    Comment by Christine on February 6, 2012 at 6:48 pm

  3. Robin

    Thanks for this post. Leslie the blessing is that NMO was diagnosed earlier and not later. Our daughter will be 31 and was diagnosed with MS at age 15 it wasn’t until she had an exasperation that caused her to go into the hospital with vision loss that thy didn’t know would return that her eye doctor got an idea to test for NMO. We said NM what? And we discovered during such a traumatic time when she was about 27 that it was NMO. It’s not something that is easy to accept at any age, however, you are empowered to support your daughter and empower her to move through this course of life with more to enlighten her journey. There is always new findings and I believe that one day they will have a cure a for this and other diseases such as Autism, Downs Syndrome etc. And Christine I like that “be honest about how she’s feeling no matter what” because our daughter is such a sweetie, humble and giving and at times even in her suffering cares so about others. We believing now as she’s receiving PLEX for improvement. She’s on a ventilator and we believe she will breathe on her own again “soon!”

    Comment by Robin on February 7, 2012 at 6:18 pm

  4. Leslie

    I just wanted to thank everyone for the information. My daughter sees Dr. Pittock at the Mayo Clinic. He seems very optimistic about a cure soon. I hope so. This is very difficult for me. My child is so young. The only real problem my daughter has is her WBC is low. She attends school, but if it doesn’t increase soon, I will have to stay home with her. She is such a sweet angel. Robin, I know exactly how you feel when you look at your child (adult or not, she is still your child). God is truly blessing us because we still have our children. How is she doing? is she still on a ventilator? I will pray for both of you.

    Comment by Leslie on March 5, 2012 at 3:38 pm

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