Not all Transplant Centers Are Created Equal

kjackkc
Jun 12
7 min read

Updated: Jun 13

One of the most important decisions a person can make when an organ transplant is inevitable is which Transplant Center(s) to register with. Your doctor may recommend one in particular based on their own opinions or experiences; however, and I cannot say this enough, you are your own best advocate. They may, or may not, tell you that you can register at more than one Transplant Center.

When I was originally advised that I needed a transplant, I was sent to KU Medical Center for evaluation at my doctor's recommendation, only to find out that my insurance would not cover me having a transplant at that hospital. I was extremely ill at the time (end-stage liver disease will do that), so saying that was not a good experience is putting it mildly. I later terminated my relationship with that doctor and found one whom I will love and respect for eternity. One of the best pieces of advice that I ever received in a support group was that if you don't like your doctor, change doctors. You are not married to that doctor and you are not going to hurt their feelings. To be honest, that guy was such an egotistical jerk I wouldn't have cared if it did. Under the care of my most excellent new doctor, I ended up at Nebraska Medical Center, which I will also love for eternity.

There is much more information readily available today to assist you and your family in evaluating whether or not a Transplant Center is right for you than there was when I had my transplant back in 2007. Be your own advocate, do your own research and don't be afraid to ask hard questions. Take a pen and paper with a list of questions and write down the answers. I always carried a note pad and had a list of questions prepared before my visit. I remember meeting with one doctor that threw a bunch of technical mumbo jumbo at me. He was literally half way out the door before I could ask a single question (that's the guy I fired). I spoke up and said, "Wait just a minute! I'm going to need you to dumb that down so that I understand what you just said and I have a list of questions". The doctor sighed, and reluctantly came back into the room and begrudgingly answered my questions. In all fairness, that kind of behavior is the exception and not the rule. The vast majority of doctors are much more professional and compassionate than that. I would also strongly recommend taking a trusted friend or family member with you. It took me awhile to realize that I was not at my best, and that I needed the support of someone who cared about me throughout this process. Turns out that when your liver is failing, it no longer filters toxins in your blood resulting in confusion, memory issues, etc. (encephalopathy).

Transplant candidates do have the ability to get on the lists of more than one Transplant Center and “multi-listing” can help your odds of getting transplanted sooner. However, to get multi-listed, you still need to contact each center individually to discuss the options. Centers have different criteria for adding patients to lists and may have different tests needed to determine acceptability of a candidate. So, you may already be a candidate at one center and have gone through multiple tests, but another center may accept the results of those tests, or they may need additional testing. The only way to know for sure is to contact the center directly to find out more.

To be totally transparent, I started researching current resources because my friend Josie's death totally pissed me off. It really makes me angry that so many people are still dying while they wait on that freaking list! I really wanted to see how the Transplant Center that Josie was registered with (KU) compared to the Intermountain Health Transplant Clinic where my surgeon (Dr. Jean Botha) practices today. I did a comparison using the Liver Waitlist Outcomes Calculator found at www.srtr.org, and the results for KU seemed significantly off. Me being me, I reached out to both SRTR and KU to ask about the results. The results and responses to my inquiries are as follow:

Comparison Results

The following table compares the transplant outcomes between the University of Kansas Medical Center and Intermountain Medical Center over a two-year period

Note: The higher the Meld Score the sicker the patient

Comparison over 2 year period	University of Kansas Medical Center	Intermountain Medical Center, UT
Deceased Donor Transplant	Meld Score 6-14 = .3% Meld Score 15-24 = 4.2% Meld Score 25-29 = 30.3% Meld Score 30-34 = N/A Meld Score 35-40 = N/A	Meld Score 6-14 = .5% Meld Score 15-24 = 8.5% Meld Score 25-29 = 43.8% Meld Score 30-34 = 83.3% Meld Score 35-40 = 62.5%
Died or Too Sick to Transplant	Meld Score 6-14 = .4% Meld Score 15-24 = .6% Meld Score 25-29 = 0 Meld Score 30-34 = N/A Meld Score 35-40 = N/A	Meld Score 6-14 - .2% Meld Score 15-24 = 1% Meld Score 25-29 = 1.4% Meld Score 30-34 = 16.7 Meld Score 35-40 = 37.5%
Still waiting	Meld Score 6-14 = 97.9% Meld Score 15-24 = 94.5% Meld Score 25-29 = 66.7% Meld Score 30-34 = N/A Meld Score 35-40= N/A	Meld Score 6-14 = 97.4% Meld Score 15-24 = 89.3% Meld Score 25-29 = 54.8% Meld Score 30-34 = 0% Meld Score 35-40= 0%
Living donor transplant	Meld Score 6-14 = 0% Meld Score 15-24 = 0% Meld Score 25-29 = 0% Meld Score 30-34 = N/A Meld Score 35-40 = N/A	Meld Score 6-14 = .9% Meld Score 15-24 = .5% Meld Score 25-29 = 0% Meld Score 30-34 = 0% Meld Score 35-40 = 0%
Removed: Condition improved - or Other	Meld Score 6-14 = 1.5% Meld Score 15-24 = .7% Meld Score 25-29 = 3% Meld Score 30-34 = N/A Meld Score 35-40 = N/A	Meld Score 6-14 = 1% Meld Score 15-24 = .7% Meld Score 25-29 = 0% Meld Score 30-34 = 0% Meld Score 35-40 = 0%

Source SRTR: Waiting List Outcomes Calculator

Inquiry Responses

Response from KU Medical Center on 6/6/25:

In 2024, our average Meld was 28. 3

2% of cases were a score of 30 or higher.

14% were 40 or higher

5% were 1A (or particularly urgent)

We accept all types of donors. This includes brain dead and DCD (Donation after Circulatory Death) and rarely are we ever first on a match run, meaning we are accepting organs that were turned down by other transplant programs.

We have an active Living Liver Donor and living kidney program Living Kidney Donor | Live Kidney Donations | University of Kansas Health System. We work with UNOS/MTN and try and not waste any usable organs.

We currently have 141 patients waiting for a liver transplant. 23 patients are waiting for a heart. 361 people are waiting for either a kidney or a simultaneous kidney pancreas transplant.

Response from SRTR on 6/6/25:

The number of is below 5. We don’t show data below that, Because rates and percentages based on small numbers (e.g., fewer than 16 observations) may fluctuate significantly over time or across different geographic areas, making them unreliable for making inferences or drawing conclusions.

Updated response from SRTR on 6/12/25:

"I was understanding this data to be updated regularly, but it appears it may have been awhile, if the notation is accurate. I’ve sent a request to our biostats team to look into this. I have also asked them to add a date range on the chart, which may be helpful for users to understand what they are looking at.

SRTR is the gold standard for reported transplant data. We get our data from OPTN’s data collection system and supplement it with Medicare/Medicaid and Social Security data. SRTR is an HHS contract and is closely monitored by the Health Resources and Services Administration. The data are accurate, as long as they’re up-to-date. If compared to raw data directly from programs, there may be some differences depending on the time- range and exclusions methods for the cohort.

Thank you for doing the comparison and bringing this to our attention. I’m not certain when we may see an update, since our biostats team’s time has been dedicated to contractual obligations, but feel free to check back and reach out to me regularly to keep tabs on this. I will be monitoring it as well. And hopefully we’ll get this resolved quickly."

My Interpretation of Responses

KU Medical Center = A+

SRTR = BS

I did respond back to SRTR providing them with the information provided by KU asking them to review it again. If I should find that the grade I gave them is erroneous, I will update this post accordingly.

Update 6/13/25: I am of the opinion that the data made available by SRTR is a valuable resource for comparing Transplant Centers. I am pleased that they responded to my inquiry and are taking the appropriate action to address my concerns.

Lesson Learned

Don't rely solely on data taken from any database, news article, or blog. Gather as much information as you can that is pertinent to your situation, and then ask the questions and consider the feedback.

Important things to consider when selecting a Transplant Center

Does the hospital accept your insurance? If needed, do they offer any kind of financial assistance?
Are you within close enough range to the facility to be considered for an available organ
How many transplants has that hospital done for the particular organ you need
If pediatric, how many pediatric transplants have they preformed.
If diabetic, what is their experience with diabetic patients?
What is the average MELD Score for transplants at that facility (or other rating system)
Do they have a living donor program?
Does the Transplant Center accept "less than perfect" organs? If not, what is their criteria for rejection and how many have they rejected in the past two years? This may vary as some programs may have stricter policies than another because they are concerned that a transplant may fail and negatively affect their "rating".
What Organ Procurement Organization / region are they in? There are currently 56 OPO's.
What are their Wait List outcomes?
Is race or ethnicity a factor?

Resources