Real Life Impacts: The Story of Michael
In 2003, 44-year-old “Michael” was living with his fiancée, “Kim”, in Aliquippa, Pennsylvania. About five years prior, Michael was discovered to have adult-onset, Type-2 insulin-dependent diabetes mellitus, and a condition that caused one of Michael’s kidneys to fail. As a result, in early November 2002, Michael began a seven-month course of daily dialysis. And on May 17, 2003, less than five months before contracting hepatitis A at Chi Chi’s, he underwent a kidney transplant.
Michael’s recovery from the transplant went well over the next several months. A dramatic shift in diet resulted in weight loss, and he experienced no nausea or vomiting. He was able to take full dosages of his anti-rejection medications. “By July,” he recalls, “I was feeling better than I ever had. I was able to resume my normal activities without having to be hooked up to a dialysis machine 3 days a week for 4 hours a day.” Michael and Kim had dinner at the Chi Chi’s restaurant in the Beaver Valley Mall on Monday, October 6, 2003.
Kim became ill with a hepatitis A infection on October 27. She was miserable for weeks and, in the midst of her acute infection, tested positive for hepatitis A. Fearing that he too would become sick, and well aware of the effects an acute hepatitis infection could have on his newly transplanted kidney, Michael contacted his transplant coordinator and began a course of daily blood tests so that any illness could be addressed in its infancy.
Michael’s acute illness began in early November, when he began experiencing nausea, fatigue, and abdominal cramps. On November 6, the nausea became worse. For days, it had been difficult to eat much of anything, but now it was next to impossible. Michael survived largely on water and plain crackers. Soon, however, even this bland diet proved too strong for his ailing stomach, and Michael was forced to subsist on water alone.
Nourishment was not at the fore of Michael’s mind; by November 9 the nausea had grown so strong that he was unable to hold down his anti-rejection medications, which prevented his body from rejecting the new kidney. As Michael recalls, “I could not stop throwing up.”
Michael’s first hospitalization for acute hepatitis A infection
The same scenario repeated itself the next morning, Monday, November 10. That afternoon, Kim rushed Michael to Allegheny General Hospital. Doctors suspected that his body was rejecting the allograft that had been inserted during the transplant. But this belief was soon dispelled when Michael’s vital signs were normal and, on examination, there was no identifiable problem with the transplanted kidney. Michael’s liver enzymes were elevated though, as was his creatinine.
A hepatitis panel was done that later returned negative. Nonetheless, in light of his exposure on October 6 and the potentially fatal complications that could arise in Michael’s case, an infectious disease specialist ordered empiric treatment for the hepatitis A virus. Michael was hydrated aggressively, and intravenous immune globulin and hepatitis A vaccine were administered. The decision was made to admit Michael to the hospital for treatment of his acute hepatitis A infection, and most importantly, to ensure that he was able to take his anti-rejection medications.
Despite being hydrated and vaccinated, Michael continued to suffer horribly. By Tuesday morning, his head had begun to ache, and the nausea and vomiting that had been constant now for a full week continued unabated. Additionally, he was hypertensive, with a blood pressure of 178/124, and constantly exhausted. Treatment for these acute symptoms included the administration of anti-emetics, Tylenol, and oral clonidine for blood pressure control.
On Wednesday, November 12, Michael was finally able to take fluids orally rather than intravenously. The infectious disease specialist reviewed Michael’s laboratory data and, finding no significant changes, gave his opinion that the hospital could offer little else to aid Michael’s recovery. Accordingly, after being instructed to obtain repeat liver function studies in one week and to follow up with the transplant clinic, Michael was discharged home. He remained slightly nauseated and deeply exhausted, weak and sore.
Over the next several weeks, Michael recovered gradually from what he thought was the worst phase of his infection. Tired and sore constantly, he could do little more than rest at home. He began slowly to regain his appetite, and by Thanksgiving, though still exhausted, he felt quite a bit better. He continued to take his anti-rejection medications.
Progress halted abruptly in mid-December. Michael woke up the morning of December 15 with a disconcerting twinge in his stomach. Not long after, he was fully nauseated again and feeling bloated and cramped too. By the following afternoon, relentless waves of nausea had churned his stomach into a boiling mess. He began to vomit the next morning and Kim, once again, rushed her bitterly ill fiancée to Allegheny General.
Second hospitalization for acute hepatitis A infection
The same afternoon, Wednesday, December 17, with liver enzymes steadily climbing and a panoply of symptoms that included weakness, constipation, abdominal cramps, nausea, and “dark, bilious” vomiting, Michael was re-admitted to the hospital. He had been unable to eat for some time because the nausea caused him to vomit immediately; abdominal cramps were “constant” and ranked an eight out of ten on the numeric pain scale.
He immediately underwent a series of diagnostic tests. Additionally, Michael’s liver function studies remained high. Doctors suspected that he was experiencing an acute relapse of his hepatitis A infection. A hepatitis panel done soon after confirmed this suspicion.
The next several days consisted of hellish nausea and vomiting and little else. Pain and discomfort attended the movement of every limb, Michael’s head continued to ache severely, and he had become mildly jaundiced. He remained constantly attached to IVs administering fluids for hydration and medications to ease the gastrointestinal symptoms. Although there continued to be no evidence of renal insufficiency or renal graft rejection, doctors suspended the administration of Cellcept, an anti-rejection medication, out of a concern that it would interfere with Michael’s recovery from hepatitis A.
Michael was discharged home on Sunday, where he again began the slow process of recovery. Constant and total exhaustion predominated as the worst symptom, but he remained subject to occasional bouts of nausea. Michael recalls, miserably, “I spent Christmas in bed. No one wanted to be around me. Everyone was afraid of contracting this virus.”
Toward the end of January, Michael’s slow but sure recovery again stopped abruptly. The usual suspects—nausea, vomiting, and fatigue—were active again, but this time, each attacked with a ferocity as yet unseen during the three-month course of Michael’s illness. “This was the worst yet,” he says. “My liver counts were at the highest that they had ever been and I was feeling the worst I had ever felt.”
The doctors felt that Michael “evidently has recurrence of the disease which is seen in 10% of patients about two or three times during the course of the disease.” They recommended that Michael be re-admitted into Allegheny General Hospital for treatment. Michael, however, did not want to be hospitalized yet again and so declined the recommendation. In the alternative, doctors advised bi-weekly liver function tests, adequate hydration, and a hold on any medications that were toxic to the liver. It was also advised that Michael’s dosage of Gengraf, another of Michael’s anti-rejection medications, should be reduced, and that he should continue taking Reglan for control of his gastrointestinal symptoms.
The following week, liver studies revealed further elevation of Michael’s liver enzymes, and the nausea and vomiting became absolutely unbearable. Rather than the comparatively mild two or three bouts per morning that he had suffered for weeks, Michael’s abdomen constantly threatened, and frequently released, huge bouts of vomiting that left Michael gasping and choking on the bathroom floor. On February 10 alone, this excruciating scene played out seven times.
Third hospitalization for acute hepatitis A infection
The afternoon of February 10, Kim rushed her desperately ill fiancée to the transplant clinic. From there, Michael was admitted into Allegheny General, yet again. Laboratory studies demonstrated further elevation of his liver numbers. He was started on intravenous fluids and anti-nausea medication. Doctors noted that Michael had recently noticed symptoms consistent with another recurrence. The doctor stated, “Given the patient’s history of hepatitis A, as well as his re-presentation with a similar symptom complex at his initial presentation in November, one would have to consider the possibility of a recurrent hepatitis A at this time.”
During this, his third, hospitalization, Michael learned that he would need to be evaluated at the Transplant Clinic for another possible transplantation surgery. This time, however, Michael’s liver was the cause for concern. Doctors feared that, with his liver enzyme levels so high for so long, Michael could develop fulminant hepatitis. Michael remembers, “I could not believe it. I became extremely depressed. I did not want to go through another transplant. In the back of my mind, I kept thinking that I too could end up dead from this virus.” Four people had died as a result of fulminant hepatitis A contracted after consuming green onions at the Beaver Valley Mall Chi-Chi’s restaurant.
Michael remained hospitalized for several days. He was frequently nauseated and, on occasion, vomited profusely. Zofran and other anti-emetics provided only fleeting, often-incomplete relief. On Friday, February 13, despite mildly elevated liver function tests, Michael was finally discharged home with instructions to continue taking Zofran and to notify his physicians if his symptoms worsened. Moreover, as doctors had suggested, the dosage of Michael’s anti-rejection medications was minimized.
Several weeks after his February hospitalization, Michael started to feel well again. The nausea and vomiting finally ceased, and his liver enzyme levels started to normalize. To Michael’s immense relief, his appointment at the liver transplant clinic was cancelled. Nevertheless, he still had not returned to a full dosage of his anti-rejection medications or other drugs that could be toxic to his liver.
On March 22, Michael returned to Allegheny General Hospital, where doctors performed an endoscopy. Michael’s duodenum and esophagus were visualized and appeared normal. Evidence of delayed gastric emptying, however, raised the possibility of diabetic gastroparesis.
For the next several months, Michael remained on a much-reduced dosage of anti-rejection medications, and some had been suspended completely for fear of further injury to Michael’s liver. But this left him susceptible to rejection of his new kidney, which is precisely what occurred. It began in late May when Michael’s legs started to swell and his fiancée noticed that he had gained weight. Well-versed on the subject of transplant complications, Michael immediately appreciated the signs that his body was rejecting the newly transplanted kidney.
Fourth hospitalization due to hepatitis A infection
Accordingly, on June 3, Michael again returned to Allegheny General Hospital for yet another complication directly related to his hepatitis A infection. After learning that Michael’s anti-rejection medications had been reduced or suspended, the attending physician admitted him immediately and ordered a biopsy of his transplanted kidney. The procedure occurred that afternoon and confirmed that Michael’s kidney was experiencing an “acute cellular rejection.”
Afterward, Michael returned to his room for a short recovery. Steroid treatment was begun, and doctors re-started Michael on his pre-hepatitis dosage of anti-rejection medications. That evening, Michael was discharged home. He was scheduled to be re-admitted on June 8 for rejection treatment. Meanwhile, he was to continue the steroid treatment and his anti-rejection medications.
Fifth hospitalization due to hepatitis A
As scheduled, Michael was readmitted on Tuesday, June 8. He was seen immediately by transplant specialist. The doctor made the formal diagnosis of kidney transplant rejection. Michael underwent a kidney ultrasound the following day.
Michael remained hospitalized for several days. Throughout his stay he was monitored closely by Allegheny General’s renal staff during his stay, and was discharged home
Michael felt better after his discharge, and far more secure now that he was back on his anti-rejection medication. And, as the next few months would show, it seems that Michael’s hepatitis A infection has finally stopped recurring. Over the summer of 2004, he experienced no further elevation in his liver enzymes and, mercifully, no more nausea or vomiting.
Michael’s medical expenses related to his recurring hepatitis A infection and multiple hospitalizations totaled over $48,000.