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Tracking The Statistics

Posted by cthodges on March 4, 2010

It is only natural to wonder where you stand on the wait list at your transplant center.  Sometimes this information will put you at the ready and sometimes it will frustrate you.  No problem.  Whether the information is to your liking or not, its mere publication underscores OPTN’s commitment to as transparent a process as is reasonably possible.  Remember, these are only statistics and heart transplantation is a very real, very human experience.

While these statistics may give you a hint of your standing at the transplant center, they in no way tell the whole story.  There are more factors  than time on the wait list, status and blood type.   Geographic location, overall health and body size are just three of the plug-in components.  There are others.

At first, I was enthralled with the tracking capabilities of OPTN.  I have attached a link on the home page of this web log.  Viewers can filter statistics about the national, state, or even specific transplant center.  There are also numbers available for post transplant information and year-to-date activity.  If you want to have a very general overview of your standing, take a look, but don’t become enamored with the stats.  A call to the transplant coordinator’s office may provide the most valuable insight.

I can remember having a discussion with a terrific nurse practitioner about the number of patients in my blood type (A positive) on the center’s wait list.  I was surprised when she told the cardiologist that I knew more about the Columbia Pres transplant wait list than did she.

Anyway, here are some statistics that may be interesting. 

  • 2,028 hear transplants were performed in the U.S. in 2009. 2.109 in 2008 and 2210 in 2007.
  • Worldwide approximately 3,500 transplants were performed worldwide in 2009.
  • Worldwide, there are 800,000 people with a Class IV heart defect and need a new organ.
  • 72.4 percent of heart transplant patients are male.  65.5 percent are Caucasian.  54.2 percent are age 50 or older.

Quite simply, there are not enough heart organs to go around.  This dilemma pressures the system and makes it imperative that organs go to compliant patients who are in the physical and mental condition to accept the precious heart.

This chart from OPTN denotes the historical survival rates of men and women for 1, 3 and 5 years: 

Region Recipient
Gender
Years
Post Transplant
Number Functioning /
Alive
Survival
Rate
95% Confidence
Interval
U.S. Male 1 Year 3931 87.5 (86.5, 88.4)
U.S. Female 1 Year 1433 85.6 (83.8, 87.3)
U.S. Male 3 Year 4856 78.9 (77.8, 79.9)
U.S. Female 3 Year 1726 76.0 (74.2, 77.7)
U.S. Male 5 Year 4514 72.4 (71.3, 73.5)
U.S. Female 5 Year 1488 67.4 (65.4, 69.3

 

This chart denotes the survival rate of recipients as classified by status at the time of transplantation. 

Region Recipient UNOS Status at Trans Years
Post Transplant
Number Functioning /
Alive
Survival
Rate
95% Confidence
Interval
U.S. Heart Status 1A 1 Year 2098 85.4 (84.0, 86.8)
U.S. Heart Status 1B 1 Year 1839 86.6 (85.1, 88.1)
U.S. Heart Status 2 1 Year 1425 89.9 (88.4, 91.5)
U.S. Heart Status 1A 3 Year 2365 74.6 (73.1, 76.2)
U.S. Heart Status 1B 3 Year 2402 79.7 (78.2, 81.1)
U.S. Heart Status 1 3 Year 50 77.1 (65.6, 88.6)
U.S. Heart Status 2 3 Year 1761 81.0 (79.3, 82.7)
U.S. Heart Status 1A 5 Year 999 67.4 (65.1, 69.8)
U.S. Heart Status 1B 5 Year 1046 72.1 (69.8, 74.4)
U.S. Heart Status 1 5 Year 2273 71.1 (69.6, 72.7)
U.S. Heart Status 2 5 Year 1681 72.8 (71.0, 74.6)

 

I regularly visited the OPTN site and filtered information about the number of patients on the waiting list at Columbian Presbyterian and later at Tampa General.  That way, I could measure the number of patients waiting and the number of transplants that had actually been performed at the center.

At one point, the number of patients waiting at Columbia exceeded the number of annual transplants by more than 2-1 and at one point almost a 3-1 ratio existed.  That is one reason why, after 18 months and one false alarm, I decided it was time to look into other centers, a practice actually recommended by Dr. Oz, one of Columbia Presbyterian’s foremost surgeons.  Dual listing is permitted by UNOS and most transplant centers, but not by all insurance carriers.

After being diagnosed with heart failure, one of my very good friends, a non-practicing physician, advised me that, “In the business of medicine, when you are a patient in need and standing in line, you are in a bad place in a terribly flawed system.”

I took those knowledgeable, experienced words to heart and made it my cause to never be standing in line waiting for help that may not arrive.  I must confess frustration that at times there seemed no way around certain aspects of a stressful system.

It did seem that the donor award system was flawed, sometimes unjust and contrary to the donor’s wishes.  I do not presume to have a solution to a system that many of the physicians at the core of the transplant profession agree is tainted.  But, I am working on an opinion and welcome all suggestions.

Please feel free to post a comment or e-mail me directly at HilandsHeart@aol.com.

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