I was discharged from Stanford after the liver and kidney transplant with a new Drug Regimen that had no overlap with my treatment regimen for liver and kidney failure. The new regimen included more drugs, that were tuned more often, and were taken at more times of the day. There were now more than a dozen drugs with five potential times they needed to be taken.
Fortunately these drugs were somewhat familiar to me from other people's descriptions and were thoroughly described by Stanford's Pharmacist both verbally and in literature. They were described to both me and my family in case I needed help maintaining the regimen.
Overall the drugs in the regimen falls into several categories:
This regimen was conveniently itemized as four pages worth of drugs: with dosage, regimen, constraints, and picture-augmented pill descriptions. The descriptions are very important: you need to take the right pill every time, and because there are more than a dozen scripts many of the pills look similar and the count of them can be overwhelming.
The following sections work through the categories
First there are the anti-rejection drugs. For me these are primarily Prograf® and CellCept® (or tacrolimus and mycophenolate mofetil by their generic names). It is common to use the brand name of drugs even when you are prescribed the generic. The brand name tends to be catchier, more familiar, and easier to say. But the pharmacist has an even catchier name for Prograf® and CellCept®: Batman and Robin. Tacrolimus is like Batman. It will get rid of those nasty foreign-organ attacking cells with the latest in technology and as expediently as possible. But Batman is bit abusive when dealing with your organs, so you don’t want him around too much. Especially new kidneys can be overwhelmed by Batman. So you balance Batman with a bit more sensitive of a superhero, mycophenolate mofetil. Robin is not as effective but has fewer side effects. It is likely I will be on the Batman and Robin duo of drugs for the rest of my life.
I have a bonus anti-rejection drug called Prednisone that is a corticosteroid (or just ‘steroid’) but I am only on it for two days. Maybe that makes it The Flash?
The next set of drugs are anti-infection drugs to help my body make up for the havoc Batman and Robin are doing to my innate immune system. There are three types of infections that need to be prevented or controlled by the post-transplant drugs: viruses, bacteria, and fungi. Many of the controlled pathogens are present within your body in trace amounts, which causes no harm to you. But when your immune system is suppressed the pathogens can dramatically multiply and that causes your body harm. Some of the anti-infection drugs were developed to treat AIDS symptoms, where HIV similarly weakens your immune system.
Following the anti-infection drugs are miscellaneous drugs that prevent heartburn, reduce the chance of blood clots, thin the bilirubin coming from the liver to the stomach, reduce my potassium, and supplement my magnesium levels. These miscellaneous drugs potentially vary significantly between patients. One commonality is the bilirubin thinner. All liver transplants have their gallbladder removed as part of the process, so the bilirubin thinner helps the initial connection between the liver and the stomach. Apparently the gallbladder is not very useful so you can just do without it. Another reason my surgeon gave for removing the gallbladder was reconnecting it could complicate future surgery in unexpected ways: the gallbladder may be in a new location or have new connections that were not expected by the surgical team.
The next set of drugs are on-demand pain medications. This includes Acetaminophen (Tylenol®) and Oxycodone. Tylenol is actually a pretty dangerous drug for livers, so it has to be used sparingly. Oxycodone is not as dangerous to organs, but it is potentially very addictive. So I avoid taking Oxy unless in a controlled setting like a hospital. I would prefer not to have it even available to me, but a feature of the discharge process was that all the drugs prescribed were also provided. So I now have, but don’t plan to ever use, the oxycodone at hand. The whole set of on-demand medications sits unused on the far right of my drug disbursement table.
The final drug is insulin, which requires a device to prick my finger, another device to measure my blood sugar, a table that translates my blood sugar to my needed insulin injection, and a third device to dole out the right amount of insulin into me. I was not diabetic before the surgery, but some of the medications I take can cause blood sugar spikes and having high blood sugar levels increases the chance of infections. Infections which Batman and Robin make more virulent. Eureka’s explanation for blood sugar testing and insulin injection are fairly interesting but pricking my finger four times a day does not sound enticing. At least the needles are tiny compared to dialysis needles. I never did learn to cannulate myself with 15-gauge dialysis needles.
Initially I used two major techniques to keep track of compliance with the regimen. A spreadsheet to sort pills on, check of consumption, and record metrics as needed. The printed version of the spreadsheet for a single day (June 1st) looked like the following:
In addition to this, I sorted the drugs in the same order as the spreadsheet and Stanford-provided listing sheet, across a desk. This was my mini-pharmacy:
An example of the Stanford drug listing (for the immunosuppressants) is:
Over time some of the drugs are removed (e.g. I was on PredniSONE for just two days and a couple of the anti-infections for three months) and others are tuned based on your body's reaction to the drugs. Especially Tacrolimus/Prograf is very tuned to have the desired 'Trough' value in your blood stream. Familiarity with the drugs and their dosage made the spreadsheet not necessary after a few weeks, and now (nine months post transplant) my main concern is just to remember if I took the morning and evening dosages at all: the quantities are all easy to remember.
After getting a liver and kidney transplant, most of my prior bloodwork continued. These tested creatinine, organ enzymes, and other aspects that showed how happy my body and the new organs were.
New bloodwork was added to verify how much immunosuppression drugs were in my system. Without sufficient suppression, my body would reject the new organs as alien (not-my-dna) invaders. With too much suppression, it would increase my chance of infections, damage the new organs (e.g. nephrotoxicity), and cause other unpleasant symptoms.
Further new bloodwork was added to check for active infections that immune suppression could make more likely.
The whole system is complicated by the patient-specific efficacy of the drugs. So the doctors use try, discern, adjust, and repeat…
One of the main goals of the frequent blood work was to tailor the amount of immunosuppressant I needed to be dosed with. After discharge I was on Tacrolimus (Prograph) and Mycophenolate Mofetil (CellCept) to prevent rejection of the new liver and kidney. There is no goal for how much of an immunosuppressant a patient consumes, there is a goal for how much of the immunosuppressant is present in the patient's blood stream. Different patients process the drugs differently, so the bloodwork measures the results. Fiddling with the dosage will change how much of the drug is in the bloodstream.
For consistency and accuracy of the bloodstream value, bloodwork should be done about twelve hours after the last dosing of the every-twelve-hour immunosuppressant. This is called the ‹Trough› value. Since bloodwork is done in the mornings, you delay the morning dosing until after the bloodwork. Based on this trough value, the dosage may be increased or decreased later in the day.
The pattern of my Prograph dosage (in milligrams) and Tacrolimus levels (in nanograms per milliliter of blood) looked like the following in the first few months. Ultimately it reached a stable amount of a dosage of 2.5mg and a trough level of about 7 ng/ml. This lasted for several months after before being adjusted again.
The pattern of my CellCept dosage was quite different and based on a different issue. It was never tailored based on my body's efficacy toward the drug, but instead was based on my body's reaction to an infection. Ignoring the infection, the graph looks like the doctors randomly wanted to have the Mycophenalate go to zero for a while before returning to 1ug/mL
A few weeks after the transplant, I had no evidence of the BK Virus. Two weeks later, it was present. And two weeks after that it was signifcant. This is what drove halfing and ultimately pausing the CellCept dosage. Eventually the level of BK Virus was relatively stable and at an acceptable level, and I was returned to the half-dosage.
At the same time my Tacrolimus levels were getting in better control too, as the initial graph showed.
During the summer and autumn after transplant I seemed to get a number of colds (which was unusual for me) and they lasted for much longer than they normally last for me. This may be a side effect of the suppression or just coincidence.
