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.


Thursday, July 1, 2010

Hurricanes & Ketamine

Elana and I have returned to Monterrey for another four day ketamine infusion with Dr. Cantu.  However, as any well mannered guest would know, it is impolite not to bring a gift when someone invites you to their home.  To that end, Elana and I decided to bring Hurricane Alex with us to Monterrey.  It has poured here non-stop for two days (we arrived yesterday afternoon (6/30/10).  The city of Monterrey is completely flooded and the dry river bed that bisects the city (Imagine if Dixie Highway was a dry river bed; I apologize for the Miami reference) is almost half way filled and is roaring like the Mississippi River.  Fortunately, all we are going to have to deal with is rain and a little wind.  We are not going to get it bad like those who were on the coast where the Hurricane hit.

As I write this, Elana is in the middle of her first infusion.  Obviously it is too early to tell how effective today's infusion will be and we really won't have a good gauge until we get back home to Miami next week.  I am confident that this will help her as the last two weeks have not been so great back at the ranch. Yet, Elana was able to power up and come to Jesse's 3rd birthday party.  I am still smiling from seeing her there watching her son enjoy his big day.  Elana has missed nearly every party, every school event and play date the last two years.  She is now just starting to attend some of these sort of functions, which most of us (including myself) take for granted.

I hesitate to say we have turned a corner.  I think the more appropriate metaphor is that we can see a corner up ahead but we are not sure exactly how far ahead the corner is.

Wednesday, April 28, 2010

Live from the ICU (again)

Never a good sign when the nurses from the ICU remember your name when they see you.  As some of you know, Elana had to have another procedure this week that also required a 48 hour stay in the ICU.  Because, it is almost impossible to find a vein to start IV's, Elana had to have a MediPort installed on Monday.  A MediPort is a permanent IV that is inserted just below the skin.  Elana's MediPort is just below her right shoulder.  The other reason she needed the MediPort is that the RSD has spread to her right hand as a result of all the IV needles that were required there during her last stay in the ICU following her gall bladder surgery in early March.

Although the procedure is relatively straightforward and is usually done outpatient, for Elana there is no such thing as a simple procedure.  Because there is an incision and a trauma to the skin, in order to prevent the RSD from spreading to the MediPort area, Elana requires a 48 hour ketamine infusion.  While it is not necessary to have an infusion in an ICU setting, Mt. Sinai Hospital requires that Elana have the infusion in the ICU because it does not have any experience with ketamine infusions (except for Elana).  As a result they want to have maximum control and support during the infusion.  Therefore the safest place for her to be is the ICU.  I don't have a problem with it and I am just happy that they are providing the infusion in the first place.  Although, it adds a sense of unneeded alarm when I tell someone that Elana is in the ICU.

Like, everyone of Elana's medical treatment and procedure's this one required enormous amounts of coordination between several doctors.  At the head of the coordination effort was one of my closest friends, Dr. Michael Rogoff.  As the doctor who performed the procedure he had to coordinate the anesthesia and ICU in addition to managing the various hospital administrative obstacles.  From the very beginning, Michael took control and never showed anything but optimism and resolve as the different hurdles were placed in his path.  Thanks are not enough for his work to make sure this procedure happened in the short window of time that we had to perform the procedure.  As I have played golf with Michael nearly every week for the past 10 years, I am sure that he knows I am still going to try to kick his ass the next time we play.  I am also certain that he would not want it any other way.

As always, Dr. Brett Kandell provided the anesthesiology support and has become an integral part of Elana's permanent medical team.  For sure, this procedure and every other procedure that Elana has had at Sinai since the onset of the RSD could not have happened without Brett's consistent support and continuous effort.

Lastly, Dr. Farcy of the ICU once again offered his support to this procedure by permitting the ICU to open its doors to Elana after the surgery.  That would seem like a given, but I can assure you that there are no givens when it comes to treating RSD and only with Dr. Farcy's active support could we have provided Elana the essential post surgical care.

Today (Wednesday 4/28/10), Elana's infusion will finish at 10:00 am and she will transferred to a regular hospital room the rest of the day.  Elana will sleep at the hospital tonight as a precaution, and if all goes well, will come home tomorrow morning.  Next Thursday, Elana will return to Monterrey, Mexico for a another series of ketamine infusions with Dr. Cantu.  After a very stressful last three months following the Coma, the hope is that this infusion will help Elana get back on track with her recovery and will lead to significant improvements going forward.

One final comment.  As anyone who has dealt with an ongoing medical issue, there is no auto-pilot or cruise control when it comes to managing care.  I am personal friends with nearly everyone of Elana's doctors.  We are fortunate to have access to major supporters of both Mt. Sinai and University of Miami who can provide access otherwise not usually available.  I have the personal cell phone of everyone of Elana's doctors and can call them 7 days a week without issue.  However, even with all that, every single  procedure and treatment requires enormous amounts of coordination and follow up.  Without fail there are miscommunications and inadvertent mistakes made by administrators and sometimes even doctors too.  You can never take anything for granted and every commitment needs to confirmed and reconfirmed several times.  I mention all this because I know there are times when I am not myself when I am talking with friends or family.  Sometimes, I may appear to be aloof or not concentrating on the conversation I am having at the moment.  I ask for your patience and understanding because I assure you the only thing I am thinking about at those particular times is what do I have to do next for Elana's care and treatment.  It is very hard for someone like me, who always wants to be in control of a situation, to have to cede control to others when it comes to such a critical issue like my wife's treatment.

Thank you all for your continued love and support.  It is always welcome and appreciated at all times.

Friday, April 2, 2010

Mexico Round 2

Tonight I am writing this post from home while Elana and Abby (My Mom) are spending their first of four nights at Hospital San Jose in Monterrey, Mexico.  Yesterday morning (Thursday 4/1), Elana and Abby flew to Monterrey and after a delayed departure from Miami, a missed connection in Dallas and a suitcase mishap in Monterrey they eventually arrived around 9:00 pm last night.  By the way, if you are wondering, I don't call my mother Abby when I am speaking to her but it is just easier to write Abby than my Mom every time I refer to her.

After staying at a hotel last night, they checked into the hospital this morning and were quickly brought to their hospital room where they will be living for four days.  They are actually right next door to Jessica Stevens.  I am happy to report that according to Jessica's mother, Sarah, there has been some improvement but unfortunately they are still at the hospital going on eight months.

Dr. Cantu came by around mid-day to get the ball rolling but unfortunately they were unable to start the IV in Elana's arm.  Because of all the IV's that Elana has had in the last few months in addition to the fact that it has always been very difficult to find a good vein in Elana's arms, Dr. Cantu had no choice but to start a central line in her upper chest area.  A central line is not as simple as an IV and must be done in a procedure room with the patient knocked out.  Elana will probably have to have a Medi-Port inserted in her chest when she comes home so that she can receive future infusions without the problems of starting an IV.  One of the other problems that all the IV's in her right arm has caused is RSD like pain and redness in her hand.  We are hopeful that the ketamine infusions will beat down any onset of RSD in that part of her body before it gets a chance to settle in permanently.

Dr. Cantu decided rather than do a standard infusion tonight, that Elana would be served best with a continuous, low-dose infusion of ketamine during the night (15 mg/ hour).  Tomorrow he will administer the first of three 2 hour infusions where Elana will receive approximately 750-1000 mg of ketamine.

While things have not gone exactly as planned, Elana is in good hands with Abby and Dr. Cantu.  I spoke with her earlier this evening and she was in good spirits.  Obviously, I miss her terribly and don't like the fact that I am not there taking care of her and controlling the situation.  However, Elana and I decided that it was best for me to stay home to be with Jesse as he has been without both of us for a good part of the last two months when you combine the first stay in Mexico, the 10 days Elana spent in the hospital after her gall bladder surgery and the near week spent in Rhode Island after Elana's father passed away.  We have been very fortunate that Jesse has continued to thrive and remain a happy little boy the whole time. We know we HAVE to do everything that we are doing, but it does not alleviate our concern about how this whole ordeal has and / or will affect Jesse.  Jesse knows mommy has a boo-boo in her foot and that she has to go to "sleep" in Mexico.  We look forward to the day when this is all in the past and maybe he does not even remember that mommy ever had a problem to begin with.

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