As of August 31st, 2011, there are 121,264 patients on wait lists at U.S. Transplant Centers. Of those 121,264 patients, 3,202 persons are awaiting heart transplants while an additional 69 patients are awaiting a heart/lung transplant.
The majority of wait listed patients (95,531) patients are awaiting a kidney transplant and another 16.952 patients are awaiting a liver transplant.
UNOS – OPTN is the governing central body for all transplants performed in the U.S. UNOS is charged with administering the organs by a set of complex factors, including blood type, time of the wait list and severity of the recipient’s condition.
Heart transplant candidates are divided into four basic categories.
- Status 1A – reflects the most serious degree of illness. These patients are characteristically reliant upon a device to continue the heart functions. Class 1A patients are usually hospitalized.
- Status 1B – are patients who are either in the hospital or at home but who are dependent on some form of intravenous feed of Primacor or Milrinone. The medication is fed from a pouch into the body through a swan usually located in the chest. If the patient is hospitalized, the swan may be in the neck.
- Status 2 – patients are not on an intravenous feed and are not hospitalized. All classes of heart transplant patients are suffering congestive heart failure and are in stage heart disease.
- Status 7 – are patients who for one reason or another are on a wait list and accruing time but have removed their name from consideration of transplant. When these patients are ready, they can convert to a different status that reflects their degree of illness.
I do not have exact data but I have been told that some patients decide at the last moment they do not want the new organ. For this reason and because the cavity size must be a good fit, many transplant centers call a second possible recipient when an organ is available.
The number of candidates for heart transplantation is very similar to the number of patients waiting at this time last year. However, the number of actual heart transplants is considerably lower than at this time last year.
UNOS has divided the country into 11 geographic areas. The map below indicates the geographical boundaries of each area. Every transplant center is located in one of these areas. Use thism link t0 see the UNOS map of regions. http://optn.transplant.hrsa.gov/latestData/stateData.asp?type=region
Below are some figures reflecting the number of patients on the wait list and the number of transplants performed to date compared to the number of transplants performed in the full calendar year 2010.
In Region 1, there are 181 wait list patients. In 2011 only 34 heart transplants have been performed. In 2010, 87 transplants were completed.
Region 2 – 325 patients are on the heart transplant wait list. 122 transplants have taken place in 2011. In 2010, 322 transplants were performed.
Region 3 – 345 people are waiting and 122 heart transplants have been completed. In 2010, 325 heart transplants were completed.
Region 4 – 468 patients are waiting and 102 hearts have been transplanted. 325 transplants took place in 2010.
Region 5 – 310 candidates are wait listed. 131 transplants have been performed in 2011 and 327 were completed last year.
Region 6 – 87 candidates are waiting. 22 heart transplants have been performed and 76 were completed in 2010.
Region 7 – 371 patients are waiting. 96 heart transplants have been performed this year and 227 were completed last year.
Region 8 – 165 patients are on the wait list. In 2011, 58 transplants are complete. In 2010, 160 hearts were transplanted.
Region 9 – there are 285 patients on the wait list. 77 heart transplants have been performed in 2011 compared to 162 in 2010.
Region 10 – 281 persons are waiting. 83 have been completed this year and 175 were performed in 2010.
Region 11 – 393 patients are on the heart transplant wait list. 109 transplants have been completed this year opposed to 253 last year.
Obviously the reason heart transplants seem to be trailing the 2010 pace is that there are not enough donors. Donor awareness programs are critical to the transplantation process. Many recovered transplant patients enlist to help grow the number of willing donors.
By visiting http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp, a patient or caregiver can access national, regional, state or specific wait list and transplant information. To track the wait list progress at a specific center, choose “Center Data” from the main menu.
You can then track how many patients in your status are waiting. You may also check how many patients with your blood type are waiting at that center and how long patients have been waiting for the heart transplant.
When I was first listed, I began to track this information. As Dr. Mehmet Oz recommends in his book You, the ideal scenario is to be listed at two centers. When I transferred from Columbia Presbyterian to Tampa General Hospital, it was at the encouragement of my health insurance provider. Based on tracking the numbers, I could see that the wait list was growing and that the number of actual heart transplants was decreasing.
This trend is what guided me to request relocation to a more balanced program. Fortunately, Florida has a very aggressive donor program. TGH also has more liberal recipient criteria than Columbia, where the cutoff entry age for wait list patients was 65. At TGH, the age limit is 70.
At Columbia Pres, there are 167 patients on the heart transplant wait list. 13 are status 1A, 52 are status 1B, 89 are status 2 and 13 are status 7. Thus far, only 34 heart transplants have been performed in 2011.
102 wait list patients are blood type O. 51 are blood type A, 14 are blood type B and none are blood type AB.
102 patients have been on the wait list for more than one year.
For comparison’s sake, lets see what is happening at TGH.
There are 26 patients of the wait list at Tampa General Hospital. Of the 26 patients, 14 are status 7, meaning voluntarily inactive. 1 patient is status 1A. 7 patients are status 1B. 4 are status 2. Personally, I like those numbers.
Let’s take a closer look. 16 patients waiting are blood type O. 8 patients are blood type A. 1 wait list patient is blood type AB and another is blood type B. I like those numbers too!
19 patients have not been on the wait list for more than one year. Remember this includes status 7 patients. Sounds encouraging doesn’t it?
Tampa General has performed 20 transplants this year and 53 in 2010. Earlier this year, I met a young man who was their 1,000th heart transplant recipient.
This information is not intended to dissuade anyone from enrollment in their current heart transplant center. This info is intended to show wait list patients or patients considering wait listing where they can go to gather information about the activity at certain centers.
Of course, the patient may not have the flexibility that I was afforded. I had a son living in Florida and reside in an area where heart transplantation was an out of network benefit. I was lucky and my health insurance provider, Capital District Physicians Plan (CDPHP), worked closely with me to provide me this second chance.
It is my belief that if I remained on Columbia’s wait list, I would still be waiting. The formula that UNOS uses to determine recipients is more complex than I could ever hope to explain. To be frank, I have not met anyone who could give me an explanation of how the selection system works.
The primary factors are:
- Blood Type
- Degree of illness
- Days on Wait List
These are what I call secondary factors.
- Cavity size
- Geographic location
- History of compliance
I am sure there are other factors. Once I was accepted at TGH, I stopped checking the center’s heart transplant trends. I had confidence in Dr. Hoffman to keep me upright and functional. I had great respect for the surgical staff and especially Dr. Sheffield. And, I became fanatical about fitness and compliance. I made being healthy enough to receive the gift of the organ my number one priority. When I was removed from my area of residency to Florida, it was easier to comply and stay fit. I did not feel pressure to perform more than reasonably possible and athletic endeavors became meditating, praying, stretching and walking. There was a fair amount of reconciliation in that process.
Sometimes that caused me a high degree of anxiety, but I came to realize that a successful transplantation would permit me to make up for lost time. Honestly, my eye never left the goal line. I recommend this type of approach.
I should also add that my beautiful bride is a person of great faith. She has friends who are of great faith. Between them, they spanned the globe and never did a day go by that someone did not contact me about their prayers for my transplantation.
I will recover and have survived so far because of the faith of these supporters in God and in me. I pledged early to do fight the fight and make the first milestone a foundation for the rest of a great life. I hope you all are as fortunate as I have been.
Between this and other life-experiences, I have used up more than my nine lives. I remain blessed for that.