Days from death and fighting for his life, 5-month-old Smith Webster received an liver transplant from an organ donation after being diagnosed with a rare liver disorder.
“Flooding into my thoughts came the hopes and dreams my husband and I had for Smith. The holidays we envisioned sharing with him and all the ‘firsts,’” said Smith’s mother Holly. “We were so close to not having any of those memories.”
Smith is just one of many lives that have been saved as a result of organ donations by Kentuckians. Last year, 324 lives were saved through Kentucky organ donations, according to a recent news release. That includes organs from 110 people. Another 327 tissue donors helped over 1,000 patients to heal.
“Stories about patients, like Smith, drive us to do this important work,” Christian Circuit Clerk Gary Haddock said in the release. “Your Circuit Clerk’s office educates all Kentuckians about the lifesaving mission of organ donation. We ask every person getting a license or ID if they would like to join the Kentucky Organ Donor Registry. No child, or spouse or grandparent or friend, should die waiting for a transplant. All of us can do something to give hope. We can register as a donor.”
The top place Kentuckians are registering as organ donors? Circuit Clerk’s offices in the state.
Nearly 24,000 Christian County residents are registered as organ donors. Statewide, 1.7 million people are registered, 53 percent of Kentuckians, the release said. Christian County also collected $3,331 for Trust for Life, a nonprofit dedicated to educating people about organ donations and helping patients in need.
Because of those donations, Smith is a happy and healthy two-year-old who had an opportunity to experience those ‘firsts’ with his family, according to his mother.
Hero Tiffany Pierce is lucky to be alive and her experience is providing other Coloradans with hope.
“Sometimes, I think it just helps the patient to hear that someone else has gone through the very road they’re going through,” said Pierce.
Pierce is a liver transplant recipient herself. In 2013, she was very sick, and running low on hope and time.
“I was given a 90 days to live,” said Pierce.
Which meant getting her affairs in order.
“I did some things with my kids, filled them in that I may not be around much longer,” explained Pierce.
But a liver transplant match was located and her surgery was a success.
“Life did a 180, which was fantastic. I got my life back,” said Pierce.
So, Pierce started volunteering at the very place that changed her life — The University of Colorado Hospital Transplant Center. She gives her time once a week, answering questions, providing hope and offering encouragement.
“Tiffany is amazing. She is able to connect with people, really, that no one else can,” said Jenny Ricklefs, Volunteer Manager, University of Colorado Hospital.
“The patients just need to get some things off their chest and that’s what I’m there for,” said Pierce.
Tiffany Pierce’s life was saved by an organ transplant and then enriched by giving back.
“Volunteering is the light of my week. This is the day I look forward to every week,” said Pierce.
Model for end-stage liver disease, also known as the MELD score, is the most commonly discussed topic when meeting with our liver transplant waiting list patients. Discussing the MELD score is the most anxiety provoking part of any conversation that we have with our patients. The reason it raises such anxiety is because the decision on who is allocated a donor organ is based on an individual’s MELD score. Those with high scores receive a new liver, while those with lower scores continue to sit and wait on this guidelines. While no system is perfect on how to allocated donor livers, the MELD score works out for the majority of patients. What I’d like to discuss here is what happens to patients that have a low MELD score, and how they deal with the waiting time, as well as the emotions associated with it.
Without going into the complex calculations in determining how the MELD score is calculated, simply realize that sicker patients, for most part, have a higher score. As we have discussed in other entries, the MELD score is calculated the patient’s creatinine, bilirubin, INR. These are all laboratory tests that are routinely obtained in our patients with cirrhosis. It has been previously determined that the higher the MELD score, the lower the survival is. Based on this fact, it has been agreed that those patients with the lowest survival rates receive donor livers first. Generally speaking, the MELD score will range between values of 5 through 40. Based on prior research, a MELD score of 40 or greater is associated with a 71% 3 month mortality. In simple terms, this means that there is a 71% chance that an individual will not survive the next 3 months. Similarly, a MELD score between 30-39 as a mortality of 53%, and scores between 20 and 29 have a 20% three-month mortality. Of interest, MELD scores of 15 or less have improved survival and only a 2-6% chance of dying. Many liver transplant programs, based on these survival statistics, preferred not to place patients on the active liver waiting list until there MELD score is 15 or greater. There is some research that suggests transplanting patients with very low MELD score is is associated with a worse outcome, and survival. As we say many times with our patients, being a little sick with cirrhosis and liver disease may not be enough to get you a transplant, but being too sick, with MELD scores greater than 40, may put you in the position where you are too sick to survive with good outcomes.
There is no doubt that we take care of many patients that have a low MELD score, associated with a statistically ok survival, yet they are plagued by numerous incapacitating symptoms. Many of these patients are unable to work, participate in usual family activities, and are constantly visiting their are numerous physicians, having frequent hospital admissions. There is a subset of patients that fall into this category, creating a very frustrating situation for both the patient and their family, as well as for the the physicians, nurses, and surgeons. As I mentioned at the beginning of this entry, this is a great source of anxiety, and regular topic of conversation. Patient’s have a difficult time understanding how they can be so sick, yet they are low on the organ allocations list. Despite their disabilities and frequent hospitalizations, they are very far from receiving a liver transplant. So, what are they to do?
The discussion I have with patients regarding this is usually well received. Unfortunately, there are patients that are frustrated with the system and feel as if they are somehow being discriminated against because of their low MELD score. Time and time again, we explain to the patient and their family how the scoring system works, and the rationale behind. Nobody ever wants to here that there is someone worse off then them, but that this is the very nature the system.
Patients that have a low MELD score need to remain fully engaged with the their health care. They need to remain as physically active as possible, so that they’re able to maintain their strength and physical conditioning. Walking, light exercises with weights, swimming, and general physical activity around their house is key. The important point is that this is done on a regular basis, which ideally would be at least 5 days per week. Excessive sleeping, sitting, and general lack of activity will ultimately have a negative impact on both their current status, as well as how they bounced back after successful liver transplant surgery.
In addition to physical activity, maintaining a healthy diet is equally important. For most of our patients with cirrhosis, portal hypertension, and chronic liver disease, they need to maintain a low salt diet. We generally recommend a diet that contains less than 2000 mg of sodium per day. In some cases, we would like this to be 1500 mg of sodium per day. To maintain such a strict diet, you need to consume fresh fruits and vegetables, and fresh lean meat or fish. I tell all my patients that they need to avoid any foods that come from a box, can, or bag. Eating out, even in what appears to be a high-quality restaurant, we’ll only serve you food that is overly salted, high in fat, and high in calories. There is almost no way that you can maintain a low salt diet to this degree by eating out. Excessive salt in the diet will lead to fluid retention which is a major reason for both physician visits, as well as repeat hospitalizations.
In addition to physical activity and nutrition, patients with a low MELD score need to remain compliance with all of there medications. If you were having any side effects from the medicine, speak with your physician and liver transplant team. Likewise, discontinue medications on your own will lead to problems. Resuming the medications that previously were discontinued, can also lead to problems.
Patients that have a low MELD score need to remain optimistic and not lose hope. This system is not perfect, but generally works in most situations. The reality is that we do not have enough donated organs to share, and this is what leads to problems. Nationally, 30% of patients waiting for a liver transplant do not survive. Patient’s come to our liver transplant programs very late in their disease, when we have very little opportunity to change their course. Patient’s that are referred early, generally will have better outcomes, but at the same time, we will be caring for a lot of low MELD score patients. MELD scores are recalculated every time blood work is obtained, updating their status within the UNOS database. Based on the 3 parameters that are entered into the computer, complications such as infections or bleeding will results in the increase of the MELD score. While no one like to see these complications, which can be life-threatening, they do results higher MELD scores.