This One Goes Out To All You Data Lovers

On Friday we went to Lahey in what has become our new weekly tradition. Derek got his blood drawn, we visited the nurses on the 6th floor and then we went down to the Transplantation clinic for his check-up. Derek’s surgeon looked at the numbers and said, “Sheesh. This is getting pretty boring.” We all agreed that boring was preferred. Then we talked numbers. The bilirubin number is, as of Friday, at 3.0. If you’ve been charting Bill & Rubin’s progress on your official Derek P. Janiak Bilirubin Scorecard™ you may notice that last week it was at 2.9. This is what bilirubin does in a person that has had elevated bilirubin for ten years. It has settled into the deep layers of Derek’s skin tissue, but will eventually work itself out. When we whine about a .1 increase, all of the doctors roll their eyes at us. We’re sticklers for perfection, and we both want that number to be teeny. They know that a .1 difference is irrelevant and assure us that his bilirubin number will fall into place in due time.

We also discussed medications for immunosuppression. Prior to Friday’s appointment Derek’s medication to prevent rejection included Prograf (Tacrolimus) and Prednisone. The rest of his medications are antiviral, antibiotics, Omeprazole (proton pump inhibiter), aspirin, and Ursodiol (this prevents gallstones from forming). But let’s just focus on the immunosuppression drugs for now. After a meeting with Derek’s team, the surgeon we met with decided that Derek should begin taking CellCept again, and if he tolerates it, then next week they will start weaning him off the Prednisone. We were initially told that low dose Prednisone would be a part of Derek’s regimen because of the autoimmune nature of PSC. However, over time, Prednisone is not a good drug even at low doses. Patients on a long term regimen of corticosteroids risk developing osteopenia, high blood sugar which could trigger diabetes, decreased adrenal function and an increased risk of infections. After the team discussed it the decision was made to put Derek back on CellCept (Mycophenolate) and gently get him off of Prednisone.

Immunosuppression is not an exact science partially because everyone’s immune system is a little different. Also interesting is that not much has changed in the world of immunosuppression drugs for transplant recipients in the past 20 or so years. The most recent development was the introduction of Prograf which was first approved by the FDA for liver transplant patients in 1994. Previously, doctors relied heavily on Ciclosporin as the immunosuppressant of choice. It works, and it is still prescribed to many patients, but typically only to patients who can’t tolerate Prograf because of a whole host of side effects. Both Prograf and Ciclosporin are processed through the body’s kidneys which can increase a transplant recipient’s chances of renal failure in the future. Both also increase a recipients chances of developing neurotoxicity. CellCept on the other hand is not processed through the kidneys, which makes it a nice replacement for Prednisone and could potentially allow for a lower dose of Prograf. It has its own dizzying list of side effects, but I think you’re getting the picture.* The doctor’s job, really the whole team’s job, is to monitor Derek as carefully as possible and adjust the doses and mix of drugs to make sure he is not susceptible to any new diseases and that his body does not reject the liver. Derek’s job is to take his meds, as prescribed, and always show up for his blood tests.

Now, for what you’ve all been waiting for: the data. This past Friday, Derek also picked up over 100 pages of his medical records from his hospital stay. Included were all of the blood test results from the entire 37 day stay. His blood was drawn daily, and sometimes more than once per day. Derek took that data and added it to the spreadsheet he started when he was diagnosed back in 2004. It provides an amazing picture of a degenerative disease. He then took the data from his liver enzyme profile and plotted it on a chart so you can see the dramatic change in his levels. In addition to the 37 days of blood tests, he’s included his most recent test results from his weekly check ups. In many cases, Derek is seeing numbers lower than they’ve been in the last 10 years.

Here’s a brief primer on what these tests are and what their normal range is for a person who doesn’t have liver disease.


Normal range is: .2 – 1.3 MG/DL

A high level of bilirubin is visible as jaundice, but healthy people might see bilirubin in the yellowish hue of a bruise. Bilirubin is the byproduct of red blood cell destruction. For healthy people this byproduct is broken down by the liver and then passed through stool and urine. For people with liver disease, high bilirubin indicates that the liver is not doing one of the many jobs it is responsible for.  Pre-transplant, Derek’s numbers were in the 3.0 to 6.0 range.

AST – serum glutamic oxaloacetic transaminase (SGOT)

Normal range is: 11 – 40 IU/L

AST is found in the liver, heart, skeletal muscle, kidneys, brain, and red blood cells, and it is commonly measured clinically as a marker for liver health. Pre-transplant, Derek’s numbers were in the 150-200 range.

ALT – serum glutamic-pyruvic transaminase (SGPT)

Normal range is: 7 – 40 IU/L

ALT is commonly measured clinically as a part of a diagnostic evaluation of hepatocellular injury, to determine liver health. ALT is found predominantly in the liver. Pre-transplant, Derek’s numbers were in the 100-300 range.

Alkaline Phosphatase

Normal range is: 30 – 95 IU/L

In humans, alkaline phosphatase is present in all tissues throughout the entire body, but is particularly concentrated in liver, bile duct, kidney, bone, and the placenta. High levels of alkaline phosphatase can indicate that the liver’s bile ducts are obstructed. When diagnosed with PSC, Derek’s numbers were 1500 IU/L – yes, that is 15x the normal level, a clear indicator that something wasn’t right! Pre-transplant, the numbers were in the 400 – 600 range.

MELD (Model for End Stage Liver Disease)

In interpreting the MELD Score in hospitalized patients, the 3 month mortality is: [6]

  • 40 or more — 71.3% mortality
  • 30–39 — 52.6% mortality
  • 20–29 — 19.6% mortality
  • 10–19 — 6.0% mortality
  • <9 — 1.9% mortality

MELD, is a scoring system for assessing the severity of chronic liver disease. It was initially developed to predict death within three months of surgery in patients who had undergone a transjugular intrahepatic portosystemic shunt (TIPS) procedure, and was subsequently found to be useful in determining prognosis and prioritizing for receipt of a liver transplant.

MELD uses the patient’s values for serum bilirubin, serum creatinine, and the international normalized ratio for prothrombin time (INR) to predict survival. The lowest value is 6.  Pre-transplant, Derek’s MELD score started around 10 in 2004, and was 15 immediately pre-transplant.

If you’d like to advance the slides of this chart at your own pace, click here or on the chart below. WordPress doesn’t allow me to embed the chart in its full glory, so I made this handy little GIF instead.

Mmmm. Colorful charts.
Mmmm. Colorful charts.


* The surgeon did tell us about a new form of immunosuppression that is in the works. It is a shot that patients receive once a month and is not processed through the kidneys, though neurotoxicity is still a concern. It has not gone through FDA approval, but if and when it does, there is a chance that Derek might one day get a shot in lieu of pills.

4 Replies to “This One Goes Out To All You Data Lovers”

  1. lOVE YOU GUYS…… the best nerds going……. as I said before you need to sell your story!!!! All your own personal research shows through in your posts and you two are mini lover specialists. You would be great advisers for others with problems and listed for liver transplants…….. the nurse here is thrilled for your continued progress and recovery!!!

  2. As a member of the support team, it’s great to look ‘back’ on the numbers and see just how far you guys have come. Well done!

    Stan (Dad)

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