survival

I fully retired from Cargill on September 1, 2004 thus concluding more than 40 years of corporate work. 

Within a few short months I was admitted to St. John's Hospital in St. Louis for what turned out to be a Cardiac condition which was very serious and complicated.  I won't go into the details simply because I survived it and am currently focused on dealing with the realities with a strong motivation to extend my life. 

It is additionally important that we scientifically define the Genetic link for heart disease in the Eicher family.  My father died at 73 of congestive heart failure, My brother died at 74 from the same condition and my sister died at age 62.  Add to all this the reality of heart disease as the number one cause of death currently in the United States and you have sufficient calling to do what ever you can to make a positive contribution to research as well as the prospect that they can actually extend my life.

In 2005 and beyond my Doctors began to recommend that I begin to consider heart transplant as the only real known solution to my condition.  There are many reasons both positive and negative open for consideration.  First and most important to me was something that Paula had said to me during my hospital stay.

I had been reading the bible in earnest, taking notes, rereading and trying my best to understand Spiritualy what was happening and what to expect.  Somewhere along the line I reached the conclusion that it was okay to die.  Forgiveness of sins, eternal life, how bad could that be?  I told Paula that I felt at peace and that I understood my fate and could accept it without fear.  She felt as though I was giving up and she looked at me directly and with strong conviction and said it sounds to me like you are giving up!  I said no I'm not giving up but I am facing reality as I see it and I guess that takes away some of my will. She propmtly stated, You would try to live for me wouldn't you?  At that very moment I realized that I had been totally focused on myself and had put asside all of my responsibilities for my family.  I reached for her and begged foregivness for my selfishness and promised that I would most certainly Live!

Since then we moved to Hot Springs Village and have been in the process of simplifying life by eliminating stress and generally changing our lives by modifying my type A personality traits.  There have been a number of setbacks mostly related to adjusting to medication but there have been some minor heart attacks, and blockage issues along the way to complicate things, but as it stands fight now I am able to function quite well with an EF of 20/25%.

Early in November 2012 My sister Ruth Ann sent an email with an attached article on the use of adult stem cells from donor hearts for treatment of heart conditions similar to mine.  This article started me on the current course.  I had just talked with Dr. Jerry Dorman my old friend from Springdale who had been encouraging me to pursue the heart transplant.  I trust him very much but as I began reading various articles on the use of heart stem cells to actually regenerate heart tissue It became apparent to me that this may well be the cutting edge technology that might solve my heart problem, define the family issues and to make a small contribution to the population at large.  Nice legacy!

Here is what I have learned about stem cells.  First of all they are not currently approved by the FDA for treatment of heart disease.  There are however many clinical studies which have been approved and funded by the FDA. My opportunity in 2013 will be to volunteer and be accepted into one of these studies.  I contacted Johns Hopkins, Mayo Clinic, Cleveland Clinic, Texas Heart Institute, and Cedars-Sinai Clinic.  All have either completed studies, have current studies in progress or will seek approval and funding in 2013.  The two most promising are Cedars- Sinai and Texas Heart Institute.  This all has to be done by my own research and initiative as an unapproved treatment utilizing stem cells is not something that my cardiologist is willing to reccomend.  He is willing to assist me but will not take initiative.  That really motivates me and makes me ever more committed to following through on this important research.  If it were easy any one could do it.  Since it is somewhat difficult this gives me a greater chance of actually being accepted into one of the programs.

Cedars-Sinai has been  the most responsive and helpful clinic to date.  After contacting them in mid November I arranged to send my medical records to them for review and finally arranged a consultation appointment for Dec, 26, 2012 while in California over Christmas.  With this exciting possibility on the docket,  Paula and I embarked on our once in a lifetime 50th Anniversary trip to Kauai.  We, simply stated had the time of our lives, we felt invigorated and hopeful with more energy than at any time in the past 7 years.  We toured every inch of the island, we celebrated daily with plenty of breathtaking photos to suppliment our memories.  We probably drank a little to much and I know we ate to much, but it was a time to celebrate and we are not remorseful.  Our return from Hawaii afforded us the opportunity to spend the week of Christmas in Newport Coast.  When we arrived Christy, Lizzy and Brian were right there to great us.  Lizzy is so big and strong that I have to get down in a three-point stance when she comes running to hug and kiss How great is life!  Never doubt the sincereity of a loving child. Christy had opened our villa earlier in the day and it was fully stocked with a literal room full of roses, along with fresh fruit and loads of goodies, including some nice California wines and all topped off with a bottle of Dom Perignon.  Wow what a welcoming party.  We celebrated an Anniversary and Christmas.  Our thanks to Christy, D.J., Lizzy, Brian and Eric for the opportunity to celebrate together.

The day after Christmas we drove to LA to Cedars-Sinai clinic.  Since it is located in Beverly Hills we began to look around for Lindsey Lohans, as we were not in the area for rehab there was no sighting.  Due to the Holiday season the clinic was well staffed but with few patients, affording us the opportunity to get right to our appointment right on time and with no delays or waiting.  We received more than 2 hours of undivided time from the staff.  We did extensive Q and A along with basic EKG, BP procedures etc. for the records.  It was quickly determined that I would not be a candidate for the current study as I had not suffered a serious heart attack within the past 12 months.  They must stick to the strict protocols written for each clinical study.  I was assured that the next study in 2013 would incorporate my conditions and that there would be a good chance that I would be approved.  

One of my primary purposes had been answered and I share that with all for our sakes.  Dr. Hamilton told me without reservation that my condition had nothing to do with genetics!  What about my father, brother and sister who died of congestive heart failure?  We all were smokers during our early years and Smoking was the cause of heart disease.  Emphatically she stated primary or secondary smoke is a killer and apparently our genectic defect is an inability to cope with this.  If you smoke, QUIT!  If you do not smoke, DO NOT START!  If you begin to notice signs of irregular heart, shortness of breath or other symptoms of heart disorders, do not procrastinate or deny seek a cardiologist and start taking care of your heart.  Brain tissue and Heart tissue will not regenerate itself at this time.  We all should pray that stem cell research will in fact resolve this as actual treatment is relatively simple.

Actions which are currently under way are heart healthy lifestyle changes both dietary and physical excercise.  Dr. Hamilton also reccommended minor changes to my medication and that I get an implanted defibralator.  My local Cardiologist is in the process of reviewing and will schedule necessary appointments within the coming days.

Regarding the actual clinical study, I expect that Cedars-Sinai is my best option some time within the next 6 months, Texas Heart Institute is scheduled for the third quarter of 2013 and I am on their list.  Additionally I am attempting to get on the list at the University of Louisville.  They have been very active in these studies and have approved studies on going.

D. J. asked me if I had any New years resolutions!  I told him that for the first time in my life I had just one and that the entire year of 2013 will be focused on admission and completion of a clinical study with stem cells.  One interesting note is that all studies such as this must have a control that is selected randomly, therefore it is always possible that I might be the placebo for the test but they assured me that if I were the one that I would be treated after the study was successfully completed.  Now you know why the Defibrolator is such an important insurance policy.

 

On Thursday I met with Dr. Heineman to discuss and schedule my ICD which has been set for February 6th.  He made the necessary changes to my medication as recommended by C-S as well as a complete discussion of the history , success and risks associated with the Defibrolator.  I was unfazed by any of this as I am fully aware and simply want to get it done.  With respect to Dr. Heineman, he is fully competitent and in fact preformed an Angioplasty in February of 2010, removing 90% blockage.  I am confident that he will do an excellent job on this as well.

 

Meanwhile Dr. Roberto Bolli's assistant from the University of Louisville called to advise that she had added me to the list for future studies which she expects to start within 12 to 18 months.  Although I am happy to be on the list, I was disappointed to learn the timetable.  No reason for me to believe it would be sooner, just hopeful.  Looks like C-S and Texas remain as my best shot.

Blessings to all!

 

RSL #1: Jeannie
Mary Ann Gibson Caffall born 21 June 1821 England
 

Comments 3

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Dick Pellek (website) on Tuesday, 15 January 2013 00:07

Good luck on your quest. I'd like to read about your progress.

Good luck on your quest. I'd like to read about your progress.
Patricia White (website) on Thursday, 17 January 2013 05:23

Best wishes on your quest. Please write again to let us know how it goes.

what a lovely way to celebrate your 50th!

Best wishes on your quest. Please write again to let us know how it goes. what a lovely way to celebrate your 50th!
Janet Holt (website) on Thursday, 17 January 2013 16:53

How wonderful to have such a supportive and loving family behind you as you face uncharted waters. Your stories may help more people than you'll ever know

How wonderful to have such a supportive and loving family behind you as you face uncharted waters. Your stories may help more people than you'll ever know