Today, there are 3,342 patients awaiting heart transplantation.
Through October 5th, only 1,417 patients have received a heart transplant in 2012.
On November 1, 2009, I was in my apartment. I had been in the hospital for the week preceding the transplant, but I had two years invested in this pursuit and when that call came, it would have taken a tank to keep me away.
My travel bag had been packed for two years. I will never forget the coordinator calling and saying, “Mr. Doolittle, this is Anne, your transplant coordinator. We have your new heart.”
Those words still send a chill through every pore of my being.
The time was 11:36 pm, The date was November 1, 2009. Every emotional sense rose surged with excitement. I cannot imagine what my heart rate spiked to, but the fated ticker was pumping hard. “Can you be at the hospital in two hours?” she asked. “Anne, I can be there in twenty minutes.” This was a scenario for which I had planned for two plus years. Fifteen hours later, the rest of my life began. During my 8-day recovery at the hospital, my daughter, Abbi, repeated a number of times what I was thinking. “It’s a miracle!”
The Role of UNOS – OPTN
UNOS works in conjunction with the Organ Procurement and Transplantation Network (OPTN) to oversee the transplant process. The managing boards of the two entities are identical and consist of political appointees, physicians and business persons.
In terms of transplants and persons on the wait list, UNOS coordinates the matching and distribution of donated organs. The national organ transplant lists are maintained through its subsidiary OPTN. UNOS also publishes regular brochures and pamphlets that are free to the public and can be procured through the website.
So, what does all this mean? Well, understanding UNOS and its organ award process can influence where you are listed and if you desire to multiple list at more than one transplant center. If you intend to pursue heart transplantation, it’s a good idea to understand the rules.
According to a UNOS brochure, these are the filters that drive the organ award and heart transplant program. It is noteworthy that persons on the wait-list should understand this filtering process was developed to ensure a structured and fair distribution system.
In the eyes of UNOS, there is no preferential treatment. However, it took me quite a while to figure out how UNOS kept score and I am still not sure I fully understand the system. I have listed the stated criteria and offered a few observations about each one.
Donor’s blood type – The recipient and donor bold type must be a match. I was told that blood type O, the universal blood type, is the most difficult type to receive a heart.
Body weight – Recipient and donor should be close in body weight. UNOS does not identify cavity size as a consideration but I have been told that it is. It only make sense that the heart in a cavity of a 6’5” male may not fit in the cavity of a 5’ 2” female. When I was called to Columbia Presbyterian, one of the first things they did was send me for a cavity size x-ray.
Degree of illness – This is a tough one but patients are all assigned a status, or degree of illness. There are four categories. Status 7 applies to an individual who is too sick or has willingly asked for temporary removal from the active list. Status 1A describes a patient who is hospitalized and receiving Primacor or a similar medication intravenously through a port, usually in the neck. Many Status 1A patients are not well enough to receive the new heart. Status 1B applies to patients who are on an LVAD or have a portable Primacor feed that they carry or wheel around with them. Status 1B patients are usually not in the hospital. Status 2 patients are not hospitalized or on a support system. In my case, I was a status 1B while in the hospital and was released without a support system. I was technically a Status 2 when I received the organ. I am so blessed!
Geographical location – If you cannot get there, you cannot receive the organ. To me, this is the most confusing element. I came to realize that there seemed a link between the donor’s location and the recipient’s address but that was never explained to me.
In thinking about it, it does make sense. For example, if the organ is procured an hour and a half away, and then the recipient is notified that there is a heart available but he or she is two hours away, it is high risk. It makes sense that that heart would go to someone who is close enough to respond quickly.
Because Tampa General is a trauma center, I moved nearby to Davis Island on the oft chance that being available would be in my favor. I was in a good place and it was sunny every day! It does help one’s outlook. I had finally arrived at the right place, mentally and physically.
According to OPTN, today 115, 075 men, women and children Americans are on wait lists for numerous organs.
The number of active waiting list candidates at 1:00 p.m. is 74,014. The balance are candidates across all organs who are Status 7.
According to OPTN, 16,585 men, women and children received transplants from January 1 through July 31, 2012. 8,277 persons donated organs during the same period.
The United Network for Organ Sharing (UNOS) describes itself as a private, nonprofit scientific and educational organization. UNOS receives about 7 percent of its operating budget from the federal government. The balance of the budget is obtained through comp0uter registration pad by members, charitable contributions and project grans from foundations and corporations.
In 2011, UNOS published a brochure stating that in the US:
- An average, 77 all-organ transplants take place every day.
- In 2011, 28,000 lives were extended and preserved through the national transplant program.
- Living donors can offer their liver, lung, kidney, pancreas or intestine for donation.
- The number of living donor contributions increases every year and now totals about 7,500 per year.
- More than 33 percent of deceased donors are 50 years of age or older.
- One in 10 donors is 65 or more.
I believe the cutoff age for heart donors is 45 years. The cutoff age for recipients varies from center to center but is either 65 or 70. UNOS reports that 18 patients die every day while waiting for an organ.
If You Are Standing In Line….
What intrigues, frustrates and pains persons on the wait list for heart transplantation is what appears to be an unclear policy for awards for donated hearts. In my case, I moved from a position of confidence about the process to an uneasy feeling and finally a desperate level of confidence. Something a friend of mine, who works in the insurance side of the industry, gave me his analysis of the award system.
“You are waiting in line for an organ and in my experience, when you are waiting in line for medical care, it does not happen.” That pretty creditable advice made an impression on me. It is that advice along with Dr. Oz’s recommendation to multiple list that prompted me to change from Columbia Presbyterian to Tampa, despite the obvious geographical change. I believe that had I remained at Columbia I would not have a heart today.
There are 58 Organ Procurement Centers (OPO) across the nation. When a donor is deceased, the OPO collects the heart and delivers it to a center determined by UNOS who immediately identifies likely beneficiaries and their location. It is my understanding that the heart should be transplanted within five hours.
When that phone rings, the patient must be ready to move quickly to the center by deploying a pre-planned strategy and pre-packed suitcase. Pack light!