Transplanted

INTRODUCTION

I survived liver cancer. This blog is about my journey.

Thirty years ago, I was diagnosed with a poorly understood condition called NASH for Non-alcoholic Stearic Hepatitis. For all but this last year, I had been symptom-free. NASH is sometimes known as fatty liver disease. For some unknown reason, fat accumulates in the liver, inflames it, and causes cirrhosis. My liver looked like that of an alcoholic, but I never drank excessively. In fact my doctor recommended that I stop drinking altogether since he did not want to have to make the case that I am not an alcoholic.

DISEASE

This past year, I did begin to display symptoms. I felt weak. I developed a persistent cough that interfered with my sleep and my speech. My work performance was being affected. I lost my appetite. In fact the smell of food, I found nauseating. I lost weight including muscle mass which made me weaker. I developed ascites (i.e. fluid accumulation in the abdomen).

During this period, the doctors from interventional radiology kept my liver cancer at bay by using chemoembolization and radiation. Chemoembolization is a procedure whereby little poison pellets are injected into the blood vessels feeding the liver tumors not only to poison the tumor but also to disrupt its blood flow.

LISTED

Now here is where things began to get weird. In order to get a liver transplant, which undoubtedly would result in the best outcome, my hepatologist, or liver doctor, would have to present my case to the the transplant board representing the institution that would perform the procedure. If the board accepts you, then you become listed as a candidate for liver transplant. If not, then you must become sicker. It is kind of crazy: one must be sick enough to merit a transplant, but not so sick where a transplant would be ineffective.

This perverse process came about because of the so called JR rule. The JR rule is named for JR Ewing on TV's Dallas played by Larry Hagman, tragically an alcoholic. Because of Hagman's celebrity status, he was given a transplant ahead of other candidates. It was deemed that this unfairness should not be repeated.

Consequently, the country has been divided into transplant regions.

Some regions have lower demand for livers than do others. As a result, a given institution in a given area may have a much shorter wait time than do other institution in other areas.

So how sick does a liver have to be in order for it to be sick enough for transplant? Severity of liver disease is determined by the MELD score. "MELD" stands for Model for End-Stage Liver Disease. It is a calculation based upon lab tests of a patient's blood such as serum sodium, serum creatinine, bilirubin, and INR (International Ratio of prothrombin time). MELD scores below 15 are considered normal or at least not a sign of liver disease. MELDs in the 20s are a sign of significant liver disease. MELDs in the 40s or 50s indicate liver failure. These high MELDs become almost pointless since patients in liver failure likely will be jaundiced (i.e. turn yellow).

One disqualifying factor for liver transplant is metastasis. When the cancer has spread from the liver proper, transplants obviously would be ineffective because one cannot replace a bad liver with a good liver and expect to cure the disease. Doctors look for metastasis mainly with CT scans. For patients whose cancers have metastasized, traditional therapies such as chemo and radiation are applied.

OPTIONS

There are a variety of options for getting a liver transplant. One is the live donor option. It is possible for someone to donate a part of their healthy liver to replace one's diseased liver. The partial, donated liver grows into a healthy, fully functioning liver.

Another option is to get listed at multiple institutions thereby enhancing one's probability of being offered a liver at one of them. The main difficulty with this approach is that the institutions may be thousands of miles apart. When a liver is offered, it must be accepted within only a few hours of the offer.

Not only getting listed is important, but also where one is listed is quite significant. If one is listed as #1, then that individual is considered first for every liver that becomes available. With lower list positions, other patients have priority.

WAITING

From where do most livers come? Cadaveric livers come from brain-dead individuals whose families are willing to donate the organs of that family member.

Not any liver is transplantible. First, the liver must be healthy. The donor may have been a homosexual, a drug user, or a convict. In these cases, the risk is higher that the liver is unhealthy. One may reject an offered liver, however.

Another consideration is liver size. Some livers may be too large to be transplanted for some people. Children and small adults may be subject to this restriction.

The final factor determining liver acceptability is blood type. In my case, I am type B which means only about 10% to 15% of offered livers I could accept. I got my transplant from Ochsner Hosiptal in New Orleans after 2 weeks.

TRANSPLANT

The transplant operation is major surgery. My surgery lasted 6 hours. After the surgery, I was admitted into the ICU followed by some time in the hospital for observation. I recall being somewhat disoriented. At times, I could not remember what had happened and why I was in the hospital. This confusion gradually disappeared; I now have a clear memory of the experience.

I did not expect to have to coax the new liver into functioning properly. There were issues with ascites due to a failed suture. Also, I ran a temperature and I had signs of kidney involvement caused by the medications I was on.

RECOVERY

During the entire time I was in New Orleans (2 months altogether), I needed to be accompanied by a care giver. The care giver only needs to show up otherwise I would not be treated. I relied on friends and family to serve as care givers. Towards the end of my stay when I had run out of friends and family members, I had to hire professional care givers.

The recovery mainly involves performing fasting blood draws. The resulting test results were generally available in the afternoon. These tests indicate how well the new liver is performing as well as the kidneys.

Since the transplanted liver is foreign tissue, it would be rejected if I did not take immunosuppressant drugs. I must take these medications for the rest of my life. I have not noticed any side-effects. However, I am susceptible to infection. Also, my risk of contracting skin cancer is increased somewhat.

There is one other side-effect of the immunosuppressant drug that I was not expecting: it raises blood glucose levels. I had been pre-diabetic (Type2), but now I am in the diabetic range. As a result, I do have to take insulin to control my blood glucose.

STATUS

Currently I feel quite normal. I have some weakness in my legs, but even that is improving. I feel well enough to start work. I plan to work with a personal trainer and to resume my tennis lessons. I have no regrets about receiving a liver transplant.