Tuesday, March 23, 2010

Dr. Kopel Rothberg (b. 1945 - d. 2010)

Early Saturday morning (3/20/10), Elana's father, Kopel Rothberg, passed away from complications related to Parkinsons.  About 10 years ago, Kopel started his fight against "Early Onset Parkinsons".  He never gave up in his determination to overcome the disorder.  He tried every medicine and treatment he could, even going as far to enroll in a study that included implementing electrodes in his brain to combat the debilitating effects of Parkinsons.  He had several mini-recoveries along the way where he would show drastic improvement in many areas.  Unfortunately, the Parkinsons proved to be relentless in the last few months and overwhelmed him despite his best efforts.

I do not believe it was coincidental that his eventual "descent" began shortly after he made a heroic effort to fly to Miami by himself to visit Elana a few days before she left for Monterrey, Mexico to begin her Ketamine Coma Trial.  I still have no idea how he made the trip because it was obvious that he was in very bad shape.  However, he was determined to make this trip no matter how difficult or dangerous it might be for him.  While he may not have known and certainly showed no signs of giving up, he probably had a sense either consciously or subconsciously that this was going to be his last opportunity to see Elana and wanted her to know he loved her and was supporting her fight against RSD.

As I write this, I am in a hotel room in Rhode Island about to wake Elana up so she can get ready for the funeral.  It is a miserable day outside, forty degrees and raining.  Clearly a day of mourning.  This week culminates the most incredible and trying two months of our lives.  Beginning with Elana's well chronicled Coma Trial in Mexico, then continuing with Elana's gall bladder surgery upon her return home from Mexico and resulting complications that forced to make two trips to the ICU for a total of seven days following the surgery and now finally the passing of her father; I would not believe that this all could happen in one continuous wave if I had not lived through it and seen it myself.  (forgive the run-on sentence).

I don't know where Elana gets the strength to endure, as she never feels sorry for herself or seeks pity.  She continues to forge on knowing with full certainty that better days are ahead.  Elana has shown some meaningful improvement and we are encouraged that there will be continued improvement as she continues her post-coma protocol.  Next week Elana is returning to Monterrey for 6 days for a ketamine infusion that we hope will springboard her to starting her water therapy sessions in mid-April.  There is some symmetry that Kopel passed away on March 20th.  The idea that "hope SPRINGS eternal" never seemed more appropriate.

Health and Happiness to you and yours.


Thursday, March 4, 2010

I Couldn't Make It Up If I Tried

At 3:00 p.m. today Elana was released from Mt. Sinai Hospital on Miami Beach after spending two and half days in the hospital for gall bladder surgery.  If you are saying to yourself, how much more misfortune can one person endure, you are probably not alone.  We have not even put away the suitcases from Mexico and she is already back in the hospital.  However, what you probably don't know is that this, we only learned recently, is actually an old problem that Elana was suffering from and we finally arrived at a solution.
If you recall from earlier posts, I explained that Elana had not eaten solid foods in almost a year.  I was actually trying to remember the last time we went out to a restaurant for dinner, and the only one I could come up was in Providence last summer.  There may have been something since, I just can't remember it.
We had explained away Elana's gastrointestinal issues as a symptom of RSD as RSD can cause the same pain that she was experiencing.  What is worse, is that Elana's job as a pharmaceutical sales rep was to call on GI doctors.  She is well versed in many matters related to the stomach.  As Elana would say her territiory was from the "gut to the butt".  Even though we could have gone to any one of several very well respected GI doctors who each would have been happy to do a full work-up for Elana, we just kept on assuming it was the RSD.
While we were in Mexico, Dr. Cantu suggested that we see a GI doctor anyway when we got home.  That led to the Ultra-Sound which led to the finding of several large gall stones.  We met with the Surgeon on Monday and Elana was had the surgery on Tuesday (3/2/10).  I am happy to report that the surgery was successful and Elana is now sleeping in her own bed as I write this.
Thanks are not enough for her wonderful team of doctors at Mt. Sinai who all banded together without regard to ego, turf, status or any other possible obstacle to high level patient care.  I feel compelled to mention them by name:

Dr. Stephen Unger, the surgeon who performed the surgery and now only needs to do a surgery on Jesse in order to complete the Hellring family surgery triple crown.  In 2006 Dr. Unger took out my appendix.

Dr. Brett Kandell, the Anesthesiologist, who I have known since high school and was willing to take the lead in coordinating all of Elana's pre-op and post-op care.  This is the second time Brett has made sure that Elana got the correct surgical protocol as it relates to her anesthesia before, during and after her surgery.  In January of 2009 Elana had a cysectomy and Brett, even though he was less than a month on the job stepped in to save the day.  It's too long a story and way too medically dense to describe what Elana needs, as RSD patient in order to have a safe and successful surgery.  What I can say is that, for Elana, the surgery is the easy part.  The Anesthesiologist, in my mind is the key player to make sure Elana is safe before, during and especially after the surgery.

Dr. Arin Newman, the GI doctor, who is also a good friend of the family along with his wife, Dr. Rachel Newman and their daughter Madison , who Jesse was putting the moves on in the picture I posted of the two of them in Jesse's jeep. Arin, cleared the path for Elana to get into his office right away once we got home and then made sure Dr. Unger got the full briefing before we saw him.  We would probably still be waiting to get scheduled for surgery if it were not for Arin.

Dr. Susana Gonzalez, Elana's internist, who has been tireless for two years in not only doing anything we have asked, but in coming up with idea's to make Elana comfortable.  Anytime there is an issue, she makes time for Elana, no matter how busy she might be.  While we were at the hospital she made sure that Elana was receiving timely and attentive care from the nurses and made sure the boat never veered off track no matter how high the waves got.  I know that sounds like a trite metaphor, but if you have ever had to spend a night in ICU, you know that it can be very intense and having a strong advocate, like Dr. Gonzalez helps immeasurably.

In addition, Dr. Farcy, the head of the ICU, and his staff did a solid job in managing Elana's case.  They were not very familiar with RSD and were willing to listen to me and Elana's other doctor's as they set out her post surgical protocol.

Of course,  I must thank Dr. Cantu for advising the entire medical team on how to manage an RSD surgical case.  There is no way the surgery and Elana's post op care would have happened the way it needed to if it were not for Dr. Cantu's unmatched ability to communicate in a way that automatically breeds trust and friendship.  In my opinion, Dr Cantu could stop practicing medicine and make a fortune training doctors and health care providers on how to treat patients and colleagues.

Also a special thanks to Dr. Ken Ratzan, Dr. Alex Ferro and Dr. Greg Michael for taking the time in the middle of the day to come by and say hello to Elana while she was recovering in the ICU.  I hope the smile on Elana's face when she saw all of you walk in the room was worth the effort you made to make the out of the way visit.

Many of you have asked how is Elana post-coma.  The answer is: It is too early to say how beneficial the coma trial was for Elana.  Although she still has severe pain in her foot, there has been a legitimate reduction in the pain.  If it was usually an 8 or 9 it is now a 6 or 7.  We believe that with the continued infusions and water therapy, that Elana will continue to see a reduction in the pain.  I don't know if this effort will yield a single, a double or a home run but I do believe we are going to get on base and more importantly stay on base.

I have no idea how many of you will read this, as I had told you that I was likely to retire my blogging hat in Mexico.  However, Elana asked me to provide a follow-up once the gall bladder issue came up.  Now that we are back home from the hospital and it appears the worst of the recovery is over, I felt I was in the clear to give a report on the recent events.

I hope all is well with you and yours