[family photo of Laura Beckett and daughter]
Roughly two years ago, I was ready to fight.
I was looking into going to Germany for the ketamine coma treatment that has had such great -- but poorly understood -- results in people with refractory CRPS. I have CRPS/RSD in all of my limbs and now, in my face. Blah blah and yadda yadda!
At the same time, recognizing some tough financial realities and the not-so-minor detail that I have a lot of what is charmingly designated by the medicos as "co-morbidities," my neurologist was urging me to look into getting a pain pump. I had wanted a spinal cord stimulator earlier on but the spread of the disease made that a not so effective option and he was having a hard time handling my pain.
Isn't that a riot?
My doctors have a hard time handling my pain. There are days, though this is not one of them, that I resent that. With my neurologist, I try to walk a fine line. There is significant dissonance in his urgings that I get one implant or the other -- because he would always preface this desire with this slightly jarring statement: "Of course, with you? If you got an infection, you would be dead before you could get to the Emergency Room." [Given what ER-based blogs reveal, I think the ER/ED might be a waste of time, anyway.]
When I first investigated the ketamine coma protocol, it cost around $20,000. The cost has at least tripled -- probably due to inflation and the increased complexity of the care as the program has evolved. But, in my opinion (and I very much respect those on the other side of the argument), the ketamine coma is the best thing, indeed, the only thing, out there that comes close to a cure. It is not permitted in the states, not because of the drug but because of the length of time patients spend in coma. Indeed, "awake" ketamine infusion therapy is gaining in popularity as a treatment.
So why are my hopes in the past tense? I began to feel ill in ways that did not make sense -- although I did, for the longest time, attribute every symptom to CRPS and just thought that this freakishly weird disease was just getting weirder. Anyway -- eventually, we discovered that I have infected joint prostheses, as well as osteomyelitis. I have had three major surgeries since August 2008, and am facing another in the coming weeks. I have had my artificial shoulders removed and am not promised new ones. My left hip and my lower spine are suspicious for infection, too. The pathogen(s) involved have not grown in the lab -- although there is no doubt that there is massive infection (According to my surgeon, when he bored into the left humerus, it suddenly "exploded," spewing pus all over the place, even sending some up into my neck. Yummy details!).
All of my plans and hopes for either the ketamine coma (I thought my investment portfolio was sitting pretty!) or the pain pump are over. No one is going to put me under for any period of time (Did I not mention ending up on a ventilator for 5 days after one of the recent surgeries?) or put another foreign body into this body.
Oh, and I have MRSA.
Today I have a major appointment with the doctor I respect the most, whose opinion I highly value. In essence, when I am unsure but he is not? I will substitute his assurance for my waffling will. He has somehow pretty much predicted the outcome of each leg of the journey thus far. "I don't think we are looking at a positive outcome."
When I face a week like this one -- The Boutiqueur today, Infectious Disease tomorrow and Wednesday, Dr. PainDude Thursday -- I get fairly antsy. I know it will be physically hard and very painful but more than that, I have to prepare for getting emotionally jerked around.
So I clean my house like a rabid woman, I cook at 4 am, I attend to a myriad of details because, all of a sudden, details alone matter.
This morning -- after finally getting my Baked Cayenne Cheese Grits to set -- I log on to find that the most recent visitor to elle est belle la seine la seine elle est belle arrived via a search for "karl beckett crps." It is not surprising that this happened -- I mean, I may mention Karl Marx from time to time, Samuel Beckett is one of my literary heroes, and CRPS? Well, I might speak of it occasionally!
My heart sank when I followed this person's lead and read
the story about the very real Karl Beckett, the ketamine coma, and CRPS.
His wife went to Germany for the treatment, but on the second day of the coma, developed a terrible staph infection -- MRSA -- and is now on a vent and has lost the use of her legs and arms. Their money has run out and he has lost his job.
Just to get her home via air ambulance, he needs at least $71,000.
Please read their story and, if you are so led, a trust fund has been set up:
c/o TD Bank NS, 129 S.Blackhorse Pike Runnemede, NJ 08078
Here's another article about the situation:
N.J. woman trapped in German hospital.
Reading the sometimes
ridiculous comments that follow the articles can be upsetting to those of us with CRPS. Dr. Schwartzman is wrongly being smeared -- everything I know of the man tells me that
he is a selfless, tireless worker on behalf of those with this stupid disease. Laura Beckett's family is, of course, upset and highly emotional but it is unfortunate that Dr. S has become the sacrificial lamb to their tragedy.
As for the ketamine coma therapy itself? The main reason it is not approved for use in the United States is the *length* of the coma, not the use of ketamine. I believe that the FDA will not approve coma treatments that last more than two days. Ketamine is being used as an accepted treatment in the U.S. for CRPS, but only as a short "infusion" while the patient is awake.
About the fur flying over the issue of ketamine being a "street drug," well, get a grip, people! Ketamine is used as anesthesia for humans in ERs and ORs every day just as, yes, it is used illicitly as
Special K [on scuzzy street corners and in dank, dark, evil bars] every day, too. It often happens that there is a lag time in the general understanding of how a drug that is abused on the street can have an extant legitimate medical use -- I encountered this when I began using methadone as my long-acting pain reliever. Folks who weren't aware of its profile as a cheap and effective pain reliever preferred to conclude that I was a heroin addict. Luckily, I have long experience in, as put by my darling brother, the Grader Boob, "making like a duck, and letting it roll off my back."
In their present circumstances, the Becketts can hardly be as forgiving. The overarching issue of whether the German doctors screened Laura for MRSA is something of a non-issue. She may have acquired it there; She may have been a carrier -- whatever, MRSA, like "stuff," HAPPENS. There is no relief to be had by playing the blame game.
This poor family is surely at wits' end. If you can, consider donating or bringing heat to their legislators, or publicizing Laura's plight. Word is spreading and I am optimistic that help is on the way -- but from Laura's vantage point, it must feel like forever.
Oh, the statement by the German doctors that this is the first complication in the ketamine coma treatments? Ridiculous. It is well known that pneumonia is not at all uncommon in the course of the week spent on a ventilator -- in fact, it happens fairly frequently, but my understanding is that the ICU nurses are good at respiratory hygiene, keep the patients turned and well-suctioned, etc. The most frequent consistent negative that I've read about is the one anticipated -- the difficult transition from ketamine coma to a normal awakened state (generalized weakness, hallucinations, trouble eating, etc.). All in all, considering the extreme nature of the treatment, I think things have gone remarkably well. Do I think it is risky? Of course, it is risky. Who has ever said otherwise?
Considering how few treatments there are for CRPS, I hope that the community of "sufferers" can refrain from being inflammatory while working to help the Becketts. Let's keep them the focus and not make this specific set of circumstances (which we really do not know, anyway) a referendum on the coma protocol.
Hooray! There is a new T. C. Boyle out and it is featured on the cover of this weekend's N.Y. Times Sunday Book Review. The Women, writes reviewer Joanna Scott, "is a mesmerizing story of women who invest everything, at great risk, in that mysterious 'bank of feeling' named Frank Lloyd Wright."
