Wait List – A Dose of Reality

| December 23, 2010 | 2 Comments

If you do not fully understand the waiting list for heart transplantation or what to expect from a heart transplant, you are not alone.  If you are on the wait list, you know that you are sick, enduring heart failure and unable to function as in the past.  You and those close to you are concerned.  Waiting for the heart transplant will certainly test everyone’s resolve.

At the same time, your cardiologist is probably telling you that you want your existing heart as long as it is functional.  That mixed message was conveyed to me by three different cardiologists at different facilities on numerous occasions.  The idea of keeping a heart that was sub-par seemed ambiguous.  It appeared a prefabricated response designed to ease the anxiety that goes along with the wait list.

In a frank conversation with Dr. Hoffman, a straight talker for sure, she chastised me for my anxiousness.  Her message was clear.  Get on with living your life because on the other side of the transplant, there are no guarantees.  Her frankness disturbed me, but in retrospect, she had it right. Neither the heart transplant process, nor the wait list carry any guarantees.

Everyone’s wait list experience and recovery from heart transplantation is a unique experience marked by a strong commitment to compliance.  Hopefully, this information from UNOS will answer a few questions:   

When does a person need a heart transplant?

“A heart may be irreversibly damaged by long-lasting heart disease or viral infection. People with long-term heart failure, heart muscle disease, or other irreversible heart injury from coronary artery disease and multiple heart attacks that cannot be treated by any other medical or surgical means may be candidates for heart transplants.

When the heart no longer can adequately work and a person is at risk of dying, a heart transplant may be indicated. It involves removing a diseased heart and replacing it with a healthy human heart.”

This explanation provides a clear description of who qualifies for a transplant.  The key phrase is “at risk of dying.”  That does not mean feeling poorly.  

The patient’s degree of illness is explained by their status. Status 1A patients are at risk of dying.  Unfortunately, these patients are walking a fine line between being healthy enough to undergo the transplant and being too sick to accept the organ.  1A patients are hospitalized and are usually on life support systems such as the left ventricular assist device (LVAD).

Status 1B patients can be in the hospital or at home and usually have a port, which serves as a pimorcor, or similar medication, feed.  Status 1B patients have an excellent chance for transplantation.

Status 2 patients have the heart failure symptoms but are not hospitalized and do not have a feed.  The chance for transplantation for Status 2 patients is a long shot, but does happen.

A common condition shared by these three groups is that the heart will not repair itself.  The heart can become more functional through the use of medications but the damage has been done.

How many people need and receive heart transplants?

  • There were 2,163 heart transplants performed in the United States in 2008, 2,210 in 2007, 2,211 in 2009.  As of 12-23-10, only 1,759 heart transplants have been performed this year.  At this moment, there are 3,247 person on the wait list in the U.S.

 

  • Each year thousands more adults would benefit from a heart transplant if more donated hearts were available.

 

  • In the United States, 72.4 percent of heart transplant patients are male; 65.5 percent are white; 19.4 percent are ages 35–49 and 54.2 percent are age 50 or older.

 

  • As of June 5, 2009, the one-year survival rate was 88.0 percent for males and 77.2 percent for females; the three-year survival rate was about 79.3 percent for males and 77.2 percent for females. The five-year survival rate was 73.1 percent for males and 67.4 percent for females. 

Worldwide there are 3,500 heart transplants performed every year; about 800,000 people have a Class IV heart defect and need a new organ.

Post-operation survival periods now average 15 years.

In a November 2008 study conducted on behalf of the U.S. federal government, it was discovered that heart transplants — all other factors being accounted for — work better in same-sex transplants (male to male, female to female). However, due to the present acute shortage in donor hearts, this may not always be feasible.

Please consider this information as you wait.  The lean organ donor program has created a significant backup with more than 3,200 people waiting in the U. S. alone. Wait list patients should live life in the fullest and maintain the most healthy lifestyle possible. As Dr. Hoffman said, there are no guarantees on the other side.  Live now!

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2 Comments on "Wait List – A Dose of Reality"

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  1. Susie77 says:

    The problem with this whole issue, is that the more organ and heart donations there are, the more people who have died. More people can live if there are more organ donations and heart donations, but there will be a one in a million chance that the operation will work and even if it does, it won’t last forever. Peace, Love, Helping the World.

  2. Sam57 says:

    Susie is wrong! I waited 20 months for my heart including 16 months with an LVAD. It has now been almost 9 years and I’ve loved every minute of those years. Do exactly what your team tells you to do, stay off the computer, don’t play doctor, don’t drink or smoke, be compliant be compliant be compliant, and your team will do the rest.

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