08-08-09 – A Day on The Wait List

| December 26, 2010 | 1 Comments

I had seven heart attacks on September 9, 2000.  On September 10th, 2000, I successfully underwent six-way open-heart bypass surgery.  My friend and Albany cardiologist, Dr. John Bennett and Dr. Larry Safi of Prime Care Cardiology saved my life.  Thank you gentlemen!

At first, I thought it was a shoulder injury suffered the night before when Suzanne tripped and I reached to try to break the fall.  Once Dr. Bennett identified the heart attack, I realized this was not the first time. Earlier attacks passed in a relatively short time causing me to attribute them to indigestion.  John seemed pretty certain that I had probably been having heart attacks for ten years or so.

My open-heart surgery was a great success.  The recovery went smoothly.  All seemed right with the world.

On the bitter cold morning of February 6th, 2007, I collapsed with congestive heart failure.  10 days later I weighed 149 pounds a loss of 36 pounds.  My weight has remained an issue even today and at times when I have been most ill, I have fallen to that 149 level again.

If you are suffering from congestive heart failure, your weight is an important signal. Prior to transplantation, I tried to sustain a weight of 165.  If my weight was higher, my breathing was more difficult.  I was prescribed Lasix to reduce the fluid accumulation.  At one point I was taking up to 200 mgs. of Lasix per day.  Once in Tampa, Dr. Hoffman held me to a firm 120 mgs. per day.    

I was told that patients should always know their weight.  Through a process of observation, the patient will learn their optimal breathing weight.  When identified, try to maintain that weight.  You must eat, but now you should eat salt-free goods only.  You should not exceed the amount of liquid your doctor prescribes.  For me, it was less than 2 liters per day.  Liquids are considered foods that melt as well as typical liquids.  Most likely your doctor will prescribe Lasix in efforts to reduce your fluid build up and to stabilize your weight.

Your ability to breathe will improve or become more difficult depending on the amount of fluids you retain.

August 8th, 2009 is my 668th day on a heart transplant list.  Today is the first day of my 668th new mindset about transplantation.  Today’s plan is far superior to its 667 mental, emotional, physical, financial, spiritual, cultural and social predecessors. 

Today’s plan is the plan, my new and revised plan; the result of 667 failed plans that have included 5 left heart cauterizations, six right heart cauterizations, countless visits to four esteemed cardiologists in three different cities and hospitals, eight emergency room visits, eight trips to hospital sponsored transplant awareness programs, one five night hospital stay, one four night stay, one three night stay, five overnighters, approximately 200 blood draws and an absolutely mind boggling number of consumed prescription pills.

At the bottom of all the numbers, is the loneliest number of all; number one.  That is the number of organs I need to run again.  I need one more call for one healthy heart that will restore my life.

At best, the wait list for heart transplantation is the ultimate, consuming, nonsensical, deviously erratic Catch 22 that tests the will and survivability of all comers.

Trust me.  As quantitative and discouraging as the transplant stats are, they do not hold a candle to the mental, emotional, physical, financial, spiritual, cultural or social damage endured by your friends and loved ones, some of whom have fallen by the wayside, while others teeter on the brink of extinction.  Remarkably, still others seem poised to enter the fray along with you. Those friends are your foxhole friends.  Those are the friends you need to see, to spend time with and to truly appreciate.  Let go of the rest.  They will never understand the height of the mountain you are climbing.  To be honest, they neither have the time nor the energy to make that climb.

At best, the wait list for heart transplantation is the ultimate, consuming, nonsensical, deviously erratic Catch 22 that tests the will and survivability of all comers.  As some of my children say over and over again, “that sucks.”  While not my chosen vernacular, it has come to strike a chord.

On October 27th, 2007, Columbia Presbyterian called for a possible transplant.  I had been on the list for less than three weeks.  A perfectly matched heart was en route to the hospital and there was a good chance I would receive the organ, but there were no guarantees and I was the backup.  However, the hospital felt that the primary candidate was too sick to receive the organ. 

That call came at 10:23 p.m.  We jumped out of bed, into a car and my heroic wife navigated the NYS Thruway onto the Palisades Parkway, over the GW and pulled up at the front door of the hospital at 12:09 a.m.  Along the way, we called our six children and some friends.  We also stayed in touch with the NYS police, the NJ police and the GW patrol.

Suzanne proved to be the trooper of the night.  Those who know Suzanne, were not surprised because the little lady is a one-person militia.

It was an exciting, nerve-wracking and frightening experience.  The call made me aware that I was completely unprepared for transplantation.  My mental and spiritual mindsets were not ready.  My business needed a more solid management plan.  We needed to make living accommodations.  Ever since that false alarm, I was prepared, fit and ready to take good care of the unbelievable gift of life. 

After waiting four hours, I was informed that the heart was being given to the other patient, a 37-year old man, who was on an LVAD, and had his first heart transplant at age 21.  The lucky couple had three children.  Suzanne and I were happy for them.

Despite not getting the heart, that false alarm was a terrific learning experience

Firstly, we learned that the State Police would keep an eye on us as we sped to the hospital.  Secondly, I immediately put things in motion to be ready for another call. I dedicated a certain amount of time for stretching, meditating and walking.  I just about stopped going out to dinner because all I could taste was salt.  My goal was determined to have as close to a zero salt intake as possible. Shortly afterwards, I decided to suspend my business activity.

However, I did not expect to go 18 months with out another call. 

For a while, I was assured by the Columbia Pres transplant coordinator’s office that “my name still comes up.”  It seemed their stock, empty answer.  After a year, I stopped asking.    

I came in second place on October 27th, but the young man’s transplant went well.  We saw him again a few weeks later at an educational class at the hospital. 

My newest attempt at accepting the impossible conditions imposed upon my family and myself by the enticing hope of the transplant system and my choice to pursue this option, has not changed. 

I have taken to writing at night because breathing is tough in the prone position.  I have never been a good upright sleeper so my sleep routine has become a series of naps.

In 15 days, I will relocate once again.  This time, I am excited about it.  The quarters are sparse, but the location is great.  I shall be alone for the first time in many moons.  It is a condition that has evolved gradually, but perhaps it has been my destiny for a while.

My commitment to the transplant program at Tampa led me to miss my daughter’s wedding this summer and to miss the birth of a new grandson in May.  I have seen Suzanne just five days in the past five months. 

A close friend has patiently reminded me that isolationism is one of the traits of denial.  I thanked her.  She is right of course.  Isolationism has been consuming me of late.  We shall add isolationism as a modification to the existing transplant plan.  It sounds better.

Today, my transplant coordinator called.  She usually sounds haggard.  I think she is under tremendous pressure and perhaps a bit overworked.  Like everyone dealing with too many sick people and not enough organs, it wears on you.  It is not a weakness, it is just the way it is.  Heck, it wears on me!

Today, Mary reported that my new International Normalization Ratio (INR) blood test was good.  I am to continue with 7.5 mg of a Kumadin (Jantoven) each day Monday through Friday and take 5 mg on Saturday and Sunday.

Last week my INR was low.  If you take Kumadin, you know it is the drug we like to hate.

With me, my skin tells me my INR.  My psoriasis inflames when my level gets above 2.5.  I know that is where it is today.  It is a good excuse to put that Florida sun to work.  Natural sunlight is the best therapy for my psoriasis.  However, people in the hospital look at someone tan and wonder how sick can that guy be!

My son suggested that I get my tan but affix a sign around my neck that declares “I am sick. Are you a donor?” 

I am tired of hearing how well I look because I do no feel as well as I look.

Filed in: My Journal, Waiting

1 Comment on "08-08-09 – A Day on The Wait List"

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  1. ralph slater says:

    I wear an LVAD and I too tire of hearing how great I look when I can sometimes barely cope. I am blessed to be able to do something and I spend hours in my barn/workshop. What people don’t realize is that in an hours time I can usually only accomplish 10 minutes of work or less but even that is satisfying. I wish all listed folks luck and advise you to keep as active as you can and do not fall to despair. Be strong and God Bless.

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