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Understanding the Waitlist When an Organ Transplant is Necessary

Updated on May 7, 2012

The knowledge I have in the area of organ transplantation is real, but I feel it is my duty to preface that my experience is based on the perspective of my father as the patient. I am neither a trained physician nor schooled in the work done by the national organ sharing organization. I speak, however, as a passionate daughter who dedicated herself (along with the rest of my family) to saving my father's life when organ transplantation was the only answer.

"Are the helicopters flying today?," my Dad would ask daily as he awaited his organ donation at the Mayo Clinic in Jacksonville, FL.
"Are the helicopters flying today?," my Dad would ask daily as he awaited his organ donation at the Mayo Clinic in Jacksonville, FL. | Source

Accepting the Transplant Diagnosis

If you are, or someone you love is, facing a similar diagnosis, please start by believing that there is hope and that there is help. Receiving the news of transplantation is one of the most desperate, uncertain and uncontrollable challenges I can think of. It is also a reality charged with more questions than answers, more insecurities than guarantees. Perhaps most of all, it is a true test of one's patience, perseverance and determination. And, I suppose, a little dose of luck at your side.

It is important to remember that organ transplantation is unique to the individual patient. In my father's case, our journey began in late 2009 when his doctors informed us that he was in need of a liver transplant. At the time, he was just shy of 67 years of age and a resident of the state of California.

We had known for many years that this day was in our future, but now the future had caught up with us. Luckily for us, we had two things working in our favor: first, the mere fact that our hepatologist was still considering my father as a candidate for transplantation was a blessing; and second, my father was safely insured via Medicare as well as a secondary private insurance carrier. All this to say that the foundation for the work that laid ahead was well put in place for us.

Awaiting the Referral for the Transplant Waitlist

Organ transplant teams are home to many major hospitals around the country. In our experience, however, these hospitals only accepted my father's case after receiving a referral from his hepatologist. I remember this seemed like an immensely time-consuming formality during an already time-sensitive situation. But it was the first mandatory step in what turned out to be a very orderly, even if lengthy, process. And to the credit of the physicians and administrators in charge of my father, everyone is well versed in the urgency surrounding transplant patients. Ultimately, I must admit, the referral process was handled very efficiently and professionally. Within a few weeks of our initial calls, we were on our way to our first appointment.

We considered ourselves extremely lucky to have local access to two very prominent transplant centers in the US: one at UCSF Medical Center in San Francisco, and the other at Stanford Medical Center near Palo Alto, CA. How wonderfully comforting to know that we had some of the world's most respected transplant surgeons in our own backyard. And, we knew to relished the fact that we had choices, which in the medical world, speaks volumes.

But with choices also come decisions. Decisions which were expected to be made by us, rather than for us. Decisions in a world that was yet 100% foreign to us. We set out knowing that we were in need of a donor liver. And that is pretty much all we knew. What followed from here were endless question marks in our journey towards transplantation.

We began our search with the assumption that there is no true limit to the number of hospitals we could contact for placement on the transplant list. However, just because we were free to select our hospitals for inquiry about transplantation, did that also mean that our insurance would follow suit and pay for more than one initial screening? Would there in fact be a better chance of receiving an organ if my father would be evaluated by transplant teams at more than one hospital? Would we be better off going out of state? Which hospitals should be among our top choices? And which single hospital would be best suited for our needs and the quality of care provided? These were just a few of the questions which made us sleep a little more restlessly from that point forward.

When a loved one is ill, it seems you continuously strive for nothing but the best.

Familiarizing Yourself with the Transplant Process

I am the type of decision maker who conducts an extensive information search before taking the first steps towards a solution. As such, I spent countless hours online trying to familiarize myself with the topic of organ transplantation. A few such places which proved to be extremely useful were UNOS (the United Network for Organ Sharing), Transplant Living, and OPTN (the Organ Procurement and Transplantation Network).

I was also eager to make personal connections with people who had first hand knowledge. I have always believed in the power of information which comes from contacts within your own community. To that end, I will never forget the phone call I had with a woman (a friend of a friend) who was a ten year post liver transplant patient. Our conversation still stands out as one of these moments in time when the true human spirit is at work. I hung up filled with hope and optimism that all would be well.

From her, I learned about details surrounding the transplantation process that gave us all strength to face this most daunting of challenges with courage and grace. So, I encourage you to open yourself up to others regarding your personal struggle and I can almost guarantee that people near and far will build a community around you that will make all the difference during the most difficult times. Because the reality is that there will be moments that will seem dark and desperate and which will require a team of people to get you through. It's inherent in the process of transplantation.

Key Steps Required to Get on the Transplant Waitlist

In broad terms, at the end of my research I had learned that in order for a patient to get on the national transplant waiting list, the to-dos unfold roughly in the following sequence:

  1. obtain a referral from your physician
  2. select a transplant hospital of your choice for an initial appointment (consider your needs pertaining to insurance, location, finances and support group availability)
  3. schedule an appointment for an evaluation to find out if you are a good candidate for transplant surgery
  4. during your evaluation, the hospital transplant team evaluates if you are a good transplant patient (this team is comprised of a coordinator, a surgeon, a physician, a financial coordinator, an insurance case manager, a social worker, and a dietician)
  5. within ten days of your appointment, your transplant hospital will notify you of your date of listing as well as your MELD score

What is This Thing Called a MELD Score?

If you are waiting for a liver transplant, your transplant team will assign you a status code. This code indicates your degree of medical urgency, referred to as your MELD score (the Model for End-Stage Liver Disease). Because the number of people awaiting a liver is much greater than the number of available livers, transplantation is reserved for the critical ill. The system offers livers to candidates with the highest MELD scores first.

Time spent waiting used to be the key factor for moving up on the waitlist, but it was later recognized that the process is more equitable if based on the severity of the patient's health. Today, waiting time is only used to break ties between patients who are similar in all other respects. Patients who have waited longer at their current medical status receive priority over those who have waited less time.

A patient can be re-evaluated to warrant changes in his/her MELD score. We never did entirely figure out the timing behind this process, but trusted that the doctors would keep my father's overall state of health in mind and do what they could to move him up on the list. The process entails a requests by the liver transplant team at the hospital to a board at UNOS which reviews the medical records and unanimously must decide whether or not a revision of the MELD score is justifiable.

One additional means of requesting an increase of a MELD score is at the discretion of the liver transplant team in situations when the patient is actually fairing worse than his or her medical tests indicate. This addresses the reality that the MELD score does not always accurately reflect how sick the patient actually is. My father was one of these cases and we were thankful for this 'loophole'. Words cannot describe how difficult it is to manage the proper balance between hoping he would deteriorate to a point that would move him closer towards the top of the waitlist, yet not so sick that he would run out of time before a donor match would be found.

At the beginning of every shift, my father's ICU nurse would spend roughly 30-45 minutes just untangling cables and resetting machines.
At the beginning of every shift, my father's ICU nurse would spend roughly 30-45 minutes just untangling cables and resetting machines. | Source

Key Steps Towards Waitlisting No One Tells You About

The reality of evaluating someone for transplantation candidacy is a bit more complicated than appears on paper. Transplant surgery is one of these magic moments where a multitude of factors need to align perfectly before it turns into a reality. Carrying our every step of the process leading up to this moment is a challenge that should not be underestimated.

In my father's case it became clear that, given his overall state of health, we would need to limit ourselves to just one local hospital for evaluation. It came down to a classic risk versus benefit analysis for us. He was too sick and too frail to warrant multiple days of testing which were not only physically exhausting but also presented the possibility of further medical complications.

And while we inquired with at least three hospitals, the work behind the scenes ultimately determined our fate. Once my father's referral papers were received, each team carefully reviewed our collection of medical records to assess the urgency of my father's case. This is done because appointments are in fact doled out by hospitals with preference given to the most urgent cases at hand relative to their overall pool of applicants.

The exams performed to evaluate my father's candidacy were completed within one day, but it was a most rigorous and exhausting schedule. Keep in mind that the patient is in relatively poor health if he or she is being referred for transplant surgery. He was literally examined from head to toe as we shuttled him from blood tests to EKGs to x-rays, mixed with consultations to assess his mental state, discussions of our financial responsibilities and inquiries about his support network to brave the wait.

Obstacles in Waitlisting for Organ Transplantation

Compounding our situation was the reality that in the state of California, the waitlist for liver transplant patients was (and I believe still is) so long that the odds of being called for surgery after being waitlisted are extremely low. Basically there are too many people with high enough MELD scores that would warrant immediate surgery, yet not enough livers to save them all. Priorities can change rapidly depending who is sick, but with too many sick people awaiting an organ donation, the situation near home for us began to look very dismal at best.

UNOS has divided the United States into 11 regions for administrative purposes. Organs are offered first to patients locally, then to a larger region, then nationally. A patient's turn for surgery is affected by the region they are waitlisted in, and MELD scores will reflect this accordingly. Also, hospitals in the same region are able to help one another in 'trading' turns for an organ request or donation, which will come into play if a patient is so ill that his or her life is in imminent danger.

Sadly, there are also circumstances that prevent patients from receiving an organ even if their MELD score ranks them at the top of the list in their region. These factors include:

  • patient cannot be located or cannot reach the hospital in time for a transplant
  • patient is temporarily too sick to receive a transplant
  • the medical team decides the organ is not beneficial to the patient due to the donor's age
  • pre-surgery tests indicate that the patient's immune system would likely reject the organ

Yes, my mother slept with the phone on her pillow for months so as to not miss THE phone call from the transplant team. Yes, my father was temporarily removed from the waitlist due to a bacterial blood borne infection that prevented him from going into surgery. Yes, at one point my father was waiting for a liver from a donor who was less than 50 years of age in order to qualify for surgery. Luckily, we did not have to worry about his immune system rejecting the organ. But I think we already had enough on our plate.

UNOS Regional Map

Source

Increasing the Odds of Transplantation By Waitlisting in Another State

With California out of the question for our family, we began to look outside of our region for alternatives. The equation we had to solve now was to find the best possible hospital with the shortest waitlist for my father. We briefly looked at places as far away as Germany, but ultimately our answer was the Mayo Clinic in Jacksonville, Florida.

Yes, we considered ourselves extremely lucky to have the option to also be waitlisted in another state. We were now seasoned with knowledge about the process, so making our initial request for an appointment seemed very routine already. Our phone call to the Mayo Clinic set the rest of our to-dos into motion: transferring medical records, finding temporary housing, booking flights and ensuring my father would be well enough to travel, forwarding mail to the new address, shipping a car from coast to coast, gearing up for two weeks of doctor's appointments to begin the waitlisting process out of state. I am sure there was more, but we did it all very gladly. Indeed, a small price to pay for the chance to save my father's life.

We became well aware of the fact that geographical proximity to a transplant program does influence the odds of being called for surgery. Although we were never told word for word, it is only logical that travel time to the transplant center is important when you are waiting for an organ and is ultimately a key factor for organ distribution. On average, patients are encouraged to live within a 4 hour radius of the hospital while they are waiting for a transplant. The ultimate choice, however, is yours.

We figured the closer, the better. When a loved one is ill, it seems you continuously strive for nothing but the best. My father was called for surgery in April 2010, roughly 5 months after we made our first phone call. The transplant team asked that he be at the hospital within the hour.

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      Dr. Suzi Campanaro 5 years ago

      I am 18onths post liver -kidney transplant. When 'they' told my husband and I to make 'proper arrangements' for my death in our home state, my husband and family found hope in a simple suggestion : GO TO MAYO in Florida! It was a long journey but worth every single second of struggle to have a healthy and long future ahead if me. I could have written your article myself. THANK YOU for all you have done to give people hope!

    • clmama profile image
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      clmama 5 years ago from Burlingame, CA

      Your comments, Praying and Bobbi, moved me to respond. My hope, since the day I wrote this hub, was to share what we learned, and even more importantly, to be a source of understanding and strength. Organ transplantation is one of the most difficult experiences I can think of, both physically and emotionally. If I can be of further support, I would feel honored to help.

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      Bobbi 5 years ago

      COngrats on making it in 5 months! I went on the list in 2006 and finally received my transplant in 2010 when it was almost too late. I too was on the list (actually #1) and was taken off it for 3 months because of an infection. However when the infection cleared up I went back on the list as #1. then 2 months later was called to the hospital for transplant. Unfortunately it was not a good match so we went home. Then 2 months later I was admitted for failing kidneys was in the hospital for 3 weeks then they could do nothing more for me and were about to send me home. As we were getting me ready to go home for the last time (we thought) The doctor called and said they had a liver for me. 14 hours later I was inrecovery from the transplant surgery. The process is as confusing as it seems and yes, I did sleep with my phone, even went to the bathroom with it. I am a single woman and if it wasn't for my 2 fantastic daughters I know I would not have been able to make it through the process.

      But now I am 2 years post and doing well. Living life!

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      Praying 5 years ago

      I thought that your article was encouraging. We are now trying desperately to get my husband on a list in multiple regions. Even though is MELD is not as high as others he has been so devistated physically by this disease. It is hopeful to see your dad made it through! Thanks!

    • Robin profile image

      Robin Edmondson 5 years ago from San Francisco

      Wow. This is an amazing resource for anyone who is or has a family member in need of a transplant. I would imagine that it is a whirlwind of emotions and this guide on understanding all of the nuances of being on an organ donor list would be incredibly valuable.