Sunday, May 15, 2011

Getting Ready to Get Ready

Imagine if you wanted to run a marathon so before you started your marathon training you decided to run a marathon thinking it would help your training for the marathon that you were training for in the first place.  Sound confusing?  Well this is what Elana is doing as I write this post.

We are back in Monterrey, Mexico for a three day ketamine infusion with Dr. Cantu.  She just completed the second day infusion a few minutes ago and to give an accurate description of how she is doing at this second is a bit difficult.  Think how your friend might be mumbling gibberish to you after they have gotten stupid drunk but before they have passed out for the night.  That is about as well as I can describe Elana as she is coming down from a Ketamine infusion.  And like your drunk friend, she will have absolutely zero recollection of anything that happened from when the infusion started.  In fact, Elana's first question to me yesterday after she came down from the Day 1 infusion was "Did Dr. Cantu come to give me the infusion?".

I shared the marathon analogy earlier because Elana is having this infusion for a very specific reason.  On Monday May 23rd, she will begin IN-patient comprehensive rehabilitation program at the Rosomoff Pain Clinic in Miami.  The hope is that this infusion will give her some needed strength to handle the rigors of this upcoming rehab program.  The Rosomoff clinic is a well respected pain clinic that focuses on physical, occupational & psycho therapy while at the same time works to eliminate as many medications as possible from the patients every day life.  It sounds easy, but I can assure you that this will probably be the most difficult thing Elana has tried in the nearly 3 1/2 years she has been dealing with RSD.  One of Elana's friends has dubbed it "Camp Pain".

The folks at the Rosomoff clinic have not guaranteed Elana anything in terms of outcomes, in fact they really don't know what to expect because, although they have dealt with RSD patients in the past, they understand that Elana has a very difficult and complex case and has tried nearly everything else under the sun to combat it but with little success to date.  We are actually going on a week to week basis with them because they did not want to obligate us or the clinic to more than one week if in fact we do not see any meaningful progress after week one.

While I understand their thinking, it brings to light another less talked about issue that RSD patients deal with.  When most any of us go to a doctor for a specific issue, we are really only thinking about one thing, "will this doctor help me solve my problem".  I don't imagine most of us walk into the office wondering, "will this doctor even see me or be willing to treat me even after the problem has been diagnosed".  I can tell you story after story of doctors who have directly or indirectly told us that they can not and will not treat Elana for any issue regardless if it is a direct RSD issue or not.   So when I get a new doctor involved in Elana's care, even if it is not an RSD problem, my first concern is always will this doctor even treat my wife let alone solve the problem.

Originally we had planned four days of infusions.  We arrived into Monterrey around noon on Friday and we were in the hospital room ready for Dr. Cantu by 1:30.  Unfortunately, Dr. Cantu was not able to come to the room until after 8:00 pm which was too late to begin an infusion.  However, Dr. Cantu decided, rather than force us to stay here an extra day he would increase the daily infusion amount to make up for the lost fourth day.  So Elana will get the volume of Ketamine she would have received   over four days but compressed into three infusions. This is one of the reasons she is having a harder time than in the past coming down from the infusions.

One last thing.  For those of you who know Elana well, you can understand this.  It never ceases to amaze me how people respond to Elana's never ending warmth and kindness.  At least 6 different nurses have stopped into her room to say hello.  Only Elana can make a connection with nurses who she can barely communicate with who she has met only a few times in her life.  This is someone who has every reason and excuse to hate everyone and everything in the world yet still looks for ways to make others happy.  We have had many "so called" friends fall by the wayside because they felt dealing with a sick person was too much of a burden on them.  In they end it was and will continue to be their loss because Elana is able to provide the type of friendship that is fully stripped of the superficial and unimportant.  You probably hear all the time from others who have had to deal with very difficult issues, " I now know who my real friends are".  What they are really saying is that " I know now know what a real friend is supposed to be".


Wednesday, February 9, 2011

Happy Anniversary

Today is our 9th Anniversary.  Exactly one year ago today, Elana was three days removed from waking up from her Coma in Monterrey, Mexico.  I am writing this post from a hospital room in Philadelphia where Elana is three days into a five day treatment.  She is trying something new this time.  She is being infused with Intravenous GammaGlobulin (sp?).  IViG as it is called has had some success with RSD patients in helping reverse some of the immune system problems that are inherent to the disorder.  We are not going into this with the same hope and optimism that we did for the Coma.  If we can get any tangible improvement in anyway shape or form, we will be very happy.

As many of you know, we have been in many hospitals in many places over the last three years.  Unfortunately, the hospital we are at this week (Drexel / Hahnemann University Hospital) in Philadelphia is far and away the worst facility we have ever been at.  The service, the cleanliness, the overall attitude of the place is miserable.  It is gut wrenching when I have to leave each night and go back to the hotel down the street, knowing Elana has to suffer there by herself. There are so many examples of how disgraceful the situation is but the one story I will share is that after waiting nearly two hours to get admitted, we finally get put in a room with another patient who is on the phone screaming to someone about smoking crack and getting out of jail.  Unfortunately, its been downhill from there.

Fortunately, Elana is leaving the hospital on Friday and we go home this weekend (weather permitting).  Oh I forgot to mention, hanging in Philadelphia in the middle of February, NOT SO GREAT.

Since this is our anniversary it is most appropriate to appreciate how great a wife I have.  As I said to her last night before I went to sleep, I would rather be with her, in some crappy hospital in Philadelphia, during the middle of winter, dealing with all of this then be anywhere else with anyone else.  I am still in awe of her strength and courage to keep fighting and battling not only for herself but for Jesse and me as well.  I don't think I could still smile and laugh and keep a positive outlook for the future if I had dealt with a fraction of what she has gone through.

Many thanks to all of you who have continued to stand by and support Elana and our family.  Every act of support, whether it is a phone call, text, email or invitation to do something is meaningful and makes a difference for Elana's spirit and her eventual recovery.

Its time for me to go and see my beautiful bride at the hospital.