Rituxi-who and Loko-what?
I have been hesitant to write this post concerning the recommendations from Dr. Fedorenko. Much like an ostrich sticking it’s head in the sand, if I don’t write about the issues they will go away. But they are constant thoughts taking up space and rolling around in my head. Time to get them out of my head and onto paper.
After three days of non stop testing, the doctor came to the conclusion that I do still have bacteria in my system, and it is most likely remnants of the sepsis. Insert bad curse word here – you choose. Dr. F ran a twice daily, four day infusion of three different types of antibiotics. One was for the kidneys, one for the gut, and the last for the brain. How the drugs knew their intended destination, I have no clue-he’s the expert. His strong recommendation was to stay in Moscow for two more weeks and undergo two strong infusions of Rituximab to destroy the B cells. The destruction of the B cells would bring about a better ability to put a halt to the severe infections, and restore the improvements first brought about by the stem cell transplant. In his beautiful accent, Dr. F said I am only a few harsh infections away from a take down. Rituximab is a form of chemotherapy, it destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders.
In order to facilitate an even even speedier recovery, Dr. F also intended to use the Lokomat one to two times daily for physical therapy. Loko-what? An amazing, almost NASA type therapy machine that retrains the brain and muscles on how to walk.
Q: What is Lokomat?
A: Lokomat, is a robotic gait orthosis and an advanced body weight support system that assists ambulatory movements of gait-impaired patients. Its unique treadmill design combines intensive functional locomotion therapy with patient assessment and simultaneous feedback.
Q: What types of patients is Lokomat indicated for?
A: Stroke patients with hemiparesis or hemiplegia;Patients suffering from an acute spinal cord injury or traumatic brain injury; Patients diagnosed with late stage multiple sclerosis, cerebral palsy, muscle spasticity, or other neurological disorders; Patients with strength, endurance, range of motion, and gait abnormalities; and Patients regaining control over motor functions.
After struggling to walk the past year and leaning on a cane or walker, my spine and body lean to the right. (Perfect words for the political season?) I also stand like a baby. You know the look…butt out and body leaning forward to keep balanced! Adorable at 12 months, Not as attractive at…..708 months.
The Lokomat would straighten the body, giving me proper alignment and gait. This provides better balance and fewer falls. Two weeks isn’t much time, but by doubling up on the therapy, the great doc felt it was enough time for the brain to grasp the concept and then continue the practice at home. Not on a Lokomat however, but by intentional and focused practice walking on my part, with the aid of a physical therapist.
So now that I am home, it is time to contemplate the next step. I have avoided the topic, tossed in my sleep, and am now working towards a decision. I know that Dr. Fedorenko is correct. My game plan is to work towards the goal, and perhaps in the beauty of a Moscow summer and the endless White Nights I originally fell in love with, return to Moscow for treatment. Hopefully the summer of 2016, if not then at some point.
Why do I have to go to Moscow for treatment? Rituximab is an off label drug for the treatment of Progressive MS, so it is not
covered by Insurance. The cost of off label Rituximab in the U.S is $16,000 – $18,000 per infusion, depending on the infusion center. In Moscow, the cost is $4,000 per infusion. Same drug, same manufacturer, just a different set of rules for what a client may be charged. There are two Lokomat machines in Oklahoma City, but they too are considered “off label” for PPMS. And at $850+ an hour, to quote Top Gun. “…the pattern is full.”
I guess this was a pretty techno heavy post. I am grateful there is so much technology in the world to provide assistance to those who truly cannot walk. What a blessing the Lokomat is to them. It is being used at almost all Army medical centers to rehab wounded vets. Amen!
So to end, thank you God for my great kids and family who stick by me, offering to help in any way they can; for friends who are never far away, for Johnnies Burgers and onion rings, fish tacos, for a little piece of heaven in south Texas, and for my three special and different Grandkids –
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- Zoey
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- Sweet 16 year old Mattie
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- Ethan – showing his true manly displeasure at shopping with his mom
All is good,
Goodnight Moon!
From Russia with Lisa... 
4 Responses to “Rituxi-who and Loko-what?”
I thank you so much for your detailed post. I have been waiting for this eversince you came home but did not want to appear like Horshack on Welcome Back Kotter. No easy decision but I would make the same one if I were in your shoes. Much love to you, if there is anything I can do let me know.
You can be Horshack any time! Now all I need to do is raise the $16,000 to get back on track. The HSCT was not a failure, it’s just that since the Sepsis, my body cannot rid itself of the bacteria. I will be seeing and infectious disease specialist here to see if that can be accomplished with a 30 dose of IV antibiotics. Much like an infusion clinic, you go in every day for an antibiotic IV. Mexico offers Rituximab in Puebla, but Dr. F was concerned that I need to be inpatient with my history of kidney infections. Rituximab can trigger that very infection and he wants me in a hospital setting so he can move me to ICU for intense antibiotics if that should occur. Therefore I am hesitant to take George up on his offer to get me in to see Dr. Ruiz. He would do it in one day and send me back home. That makes me nervous. Thanks for your note, it uplifts me. There are days I am pretty down about all of this..walking is horrid and I really need a scooter. Everything else has catapulted downhill as well. Was going to blog about it, but concerned it would look like a pity party. Your thoughts?
Lisa – We didn’t know you were home already, but I’m sure Stuart is very happy. I really hope and pray you get to go back to Russia next year when you need to. We’re going to be asking God to work this out!! I wish you could come by the club house sometime and let us see you and give you a hug!
I pass by often. We are still house sitting in Jones, so rent free is pretty nice! What days and times are you guys there? I will aka e point of coming in when you are there!!!
Much love,
Lisa