Family Perspectives II
This "adventure" with Larry has been quite a roller coaster the last four years. Although I was aware of Larry's drinking problem, I didn't see him often enough to realize what was happening. In March 2005 he landed in the hospital jaundiced and incoherent, with a diagnosis of End Stage Liver Disease. It was pretty shocking for me to see those words on his chart. I refer to this episode as his "crash and burn" (he had hit his head and was bleeding enough to go to the hospital), which marked the end of his drinking. At the time, our sister was in the last stages of pancreatic cancer and I couldn't imagine my mother losing two of her three children!
Larry went home with special medications and diet restrictions to compensate for what his liver couldn't do. From then on, Lactulose was his constant companion. He was connected with California Pacific Medical Center in San Francisco, California, early on and it was great comfort to have them in charge of his care. The process was a real education, enhanced by being able to go to regular visits with him. The members of the medical team were up front with Larry about the course of the disease, the risks involved and how he could best help himself. He immediately became a compliant patient, which surprised me to some degree, given how Larry likes to make decisions for himself. It was a tricky balancing act to recognize how certain foods and medications affected him. It is amazing how we gain such an appreciation of the human body and how it works.... when it doesn't!
It was very difficult to see Larry lose his independence as his condition worsened and he had to ask people to drive him to appointments or run errands. His vast medication list would have been overwhelming to anyone. It's a tall order for a healthy person to comprehend all of what he had to understand about the illness, but would seem insurmountable for someone who feels lousy and is sometimes mentally unclear. If he missed any doses of Lactulose (which gets rid of the toxins that the liver cannot) he got the symptoms of encephalopathy (confusion and disorientation). This cycle frequently landed him in the hospital. Larry's girlfriend Roz was great at making sure he had his meals, that he never ran out of his medications and that his huge pill box was filled each week. It was worrisome that none of us could be with him all the time to confirm that all his medications were taken. Brian checked in on him very frequently and I usually talked to him once a day.
I can't say enough about CPMC and their attentiveness to Larry. His transplant coordinator always made herself available when we called, with a suggestion to the current concern. How do you get a transplant? When your MELD (Model for End Stage Liver Disease) score is high enough (meaning you are sick enough!). The MELD score is made up of three lab results: Creatinine, which shows kidney function, Bilirubin, which shows liver function, and INR (international normalized ratio for prothrombin time), which shows coagulation function. A MELD of 25-30 is what you need to be seriously considered for a liver transplant. Most of the time Larry's MELD showed him to be too healthy for a transplant, no matter how poorly his body was functioning. How frustrating that was for all of us!
Life kind of went along while Larry waited for a higher score. He went on vacations and outings with Roz and even made it to his son's wedding in Maui (we all sweated THAT one!). Then, four days before leaving for the wedding, he got the news that his MELD had been raised to 25 by the transplant board. His many hospitalizations had been reviewed and considered with his lab work. That made the wedding trip joyous for all of us, especially for Brian, to think his dad might have a healthy life again.
Then there was that momentous call on November 21, 2008 to come to the hospital. A liver was available for a transplant! I can remember that day with happiness, but Larry and all of the rest of us know what people waiting for a liver are going through.
CPMC has an efficient system and experienced professionals who have been on the transplant team for a long time. It made a difference that Larry had a good support system at home. They require it before giving you a liver, but the familiarity that develops from seeing the same people month after month makes a difference. The decision to ensure that every hospitalization be at CPMC was also a good one. They see your medical condition right in front of them, whereas local hospital visits are “on paper”.
Larry was his own best advocate, which was a huge advantage to the outcome. He knew his medications, what they were for, and made suggestions about changes. He also made enough phone calls to the coordinators and physicians that they were not about to forget about him. "No more Mr. Nice Guy!" After all, you only have one life and his was pretty awful for a long period of time before his transplant. Those around him who love him felt quite helpless to have to see his frustration at his quality of life.
Another important factor for someone going through this experience is the cost!!! Yikes! Some of the medicines really do siphon your bank account. All this to support your illness, and hope if you get a transplant that there will be money left to enjoy life.
The night that we took him to the hospital for the transplant surgery was such a happy occasion, even though I know what a huge surgery it is. His whole family support network was there when he got out of surgery to enjoy the good news.
This is a huge topic with much to tell. I am a surgical nurse and yet I still marvel at what we are able to do to make people better. This website can do so much to touch others. My hope is that the importance of organ donation be recognized. It is truly a miracle and we are forever grateful to Larry’s donor and family for the new life that has been given to him.
Diane T. M., Larry’s sister
Please e-mail any questions, comments or suggestions to:
