Monday, January 16, 2012

A Fallen RSD Angel

I would like to preface this post by saying that I have the permission of the mother (Leslie) of this fallen RSD Angel (Andrea) to talk about her daughter as at this point, it is still too painful for her to sit down and write her story.

This weekend, I was reading posts in the Ketamine Klub on Facebook (which I am a co-administrator); which is part of my morning routine. I came across a one line post in the middle of a thread.  It read "My daughter died from the Ketamine coma treatment".  Other than one of my  newest administrators, who had only been appointed the day before, no one seemed to have noticed this post.  I immediately responded to the post on the thread and sent this mom a person message with my condolences and to let her know that if it wasn't too painful, I would love to hear her daughter's story.

As you know by know, I consider myself one of the "pioneers" in receiving Ketamine  (someone else called me that because it sounded better than guinea pig).  Well Andrea was also one of the pioneers of Ketamine.  She went to Germany in 2002 for a Ketamine coma and was pain free for 19 weeks.  Unfortunately, her insurance would not cover the outpatient infusions so she wasn't able to receive follow up Ketamine.  Her pain returned and she got sicker.

At some point after her RSD returned, she needed a heart valve replaced which requires that you be on Coumadin for life.  Her RSD continued to ravage her body and in 2008 arrangements were made for her to return to Germany for a second coma treatment.  It was at that time that the program in Germany was closed and Andrea's dream to return to Germany slipped away.

Andrea always fought for others with RSD.  She started an organization called fighting4us.  She was always trying to help others. She got RSD from a chipped bone in her foot at age 13 and lived with it for 13 years.  Andrea was a fighter herself.  Although I never met her, through messaging with her mother, Leslie, I feel as though I knew her. I know that I would have liked her because I admire her already.  

In 2009, arrangements were made for Andrea to go to Mexico in February for a second Ketamine coma.  The medical staff there knew that she had the valve replacement.  Andrea's cardiologist and her Philadelphia neurologist both gave the clearance for the coma treatment.  The staff in Mexico knew that Andrea was on Coumadin and that they would need to put her into the Ketamine induced coma and bring her out of the Ketamine induced coma more slowly.  While Andrea was in the hospital, she was switched to Heparin (which is normal protocol).

Leslie describes Andrea's coma as being more restless in Mexico than in Germany.  She said that she slept peacefully in Germany but appeared frightened in Mexico and had to be restrained because she was thrashing about.  As they were about to bring her out of the coma, Leslie states that the family was sent home to rest being assured that Andrea would be brought out of the coma slowly and that the full staff would attend to her.  When they arrived in the morning, Andrea was wide awake.

A day and a half after she woke up, Andrea's heart gave out.  Andrea passed at 26 years of age on February 11, 2009; far too young.  Andrea's cause of death was heart failure.  No parent should have to burry their child.  No parent should have to watch their child suffer with something as hideous as RSD. Unfortunately, as we all know too well, many children do suffer with RSD.  My heart goes out to Andrea's parents for having to do both; watch their beloved Andrea suffer with RSD and having to burry her!

For those of us who have RSD, we know the pain that Andrea suffered in her short life.  For those of us who are caregivers: mothers, fathers, spouses of RSDers, we can identify with Leslie and Gus in their intense pursuit to find any relief for their beloved daughter and can't even imagine the pain that her loss must feel like.

I like to think that we go into these extreme treatments, like coma Ketamine, with informed consent, knowing the risks; but do we all really know the ultimate risk of the treatment.  Everyone who goes into a treatment is someone's son or daughter, could be someone's mother or father, sister or brother.  I am not saying that you should not have these treatments.  What I am saying is that you need to be sure that you know what all of the risks are and that you are willing to take the ultimate risk and put your family through the ultimate outcome before you decide to go through this treatment.

Since I am a nurse, I knew what the risks were going into a Ketamine induced coma.  I weighed those risks against what the quality of life that I had at the time.  When I had the Ketamine coma; there were no other Ketamine options like there are now.  There was no inpatient awake.  There was no outpatient infusions. I also had faith in the German health care system.  My father and uncle were born in Germany and I had distant relatives that still lived there.

Andrea's story has touched my heart for a whole host of reasons.  Andrea is one year younger than my oldest daughter.  I can't imagine not having been able to spend the past three years with Laura in my life.  Andrea spent half of her life fighting RSD and yet helping others fight RSD.  From that standpoint, I want to be just like Andrea.  Although I never met her, I have thought  about her and her family a lot over the weekend.  

After my coma in Germany, I spoke to many patients and their families who were considering going to Germany about my experience.  I gave them suggestions about what to bring with them, what to expect during the coma treatment in German, etc.  It is very possible that I spoke to Andrea or Leslie prior to their trip to Germany.  I hope that if I did, I made a positive impact.

Andrea, I hope that your story will cause people to stop and think about all of the risks before they make the decision to go to a foreign country with a less sophisticated health care system than that of the US.  Again, I'm not saying that we shouldn't go.  I'm saying that we all need to do our homework and know everything that we can about the treatment, the facility, the doctor, the risks, etc. before going to have the treatment. You need to weigh the quality of life that you currently have against the potential risks of the treatments.  Ultimately it is your decision and it should be an informed decision.

Perhaps when Leslie and Gus are feeling stronger, they can join us in our fight to get all insurance companies (see the link on the Ketamine Klub to Erin Brockavitz's web page to tell your story) to cover Ketamine here in the US.  Had Andrea's insurance company covered her outpatient follow up Ketamine after her trip to Germany PERHAPS (of course there is no way to be sure) it could have held her coma treatment. If, like Jon Haag, coma treatment were available here in the US PERHAPS (again there is no way to know because people die here in the US too) coma Ketamine would be safer.  At least, we wouldn't have the expense of paying out of pocket, travel and treatment would be available to more people.  The more a procedure is done, the safer it becomes.

Leslie and Gus, thank you for letting me share this little part of Andrea's story.  She must have been a remarkable woman.  When you have her foundation set up, I would love to share information about that with my readers as well.  No parent should have to burry their child and no child should have to endure the horrors of RSD.


  1. Andrew was an incredible good-hearted person. She helped alot of fellow RSD warriors in her for too short life. Leslie and Gus are very proud and dedicated to their family and the organization Andrea started.
    That is why I am so honored to have been one of finalists "The Fighter of the Year Awards" for 2010. I have so much admiration for Andrea, I strive every day to help other RSD warriors and disabled persons.
    Peace, pain free and blessings,

  2. Thank you Stephanie Maberry. Congratulations on being a finalist of "The Fighter of the Year Award" for 2010. Keep up the fight!

  3. I'm sorry about the painful outcome of Andrea and her family's story though grateful that it was shared so that others (like me) will know the full range of possible outcomes from such treatments.

    My deep condolances to Andrea's family. Hugs.

    Gutsy Girl