The last day I really remember is New Years Day so the rest of the story is what I was told by Joe, my parents and Jenny.
December 30th-January 3rd: I was in room 330 in the Transitional Intensive Care Unit(T-ICU). I had the best, most fun nurses on that floor..huge shout out to Victoria, JD, Roy and Russell. They made me laugh in between puking and were just great. They still were hopeful my liver would recover since my mind was clear and I was still as sharp as a tack. Once your mind goes, they call it encephalopathy since the toxins cannot be cleared from your system and you start being confused and lethargic. They told Joe what to look for and he needed to notify my Dr if he saw any signs.
January 4th: I became very lethargic showing signs of encephalopathy and Joe notified the Dr's and they transferred me to the Intensive Care Unit(ICU) immediately. They also did a liver biopsy but put me on the transplant list before they even got the results back since I started to go downhill fast. You are listed on the transplant list in order of your MELD score and my MELD score was the highest of 40 so I was listed number one on the West Coast. My liver biopsy came back that half of my liver was dead.
January 5th: I started to throw up uncontrollably and they became really worried that I would exhaust myself and not be able to be operated on so they put me in a medically induced coma using the same drug they euthanize people with called Pentobarbital. They also put me on a ventilator and gave me the same Drug that killed Michael Jackson, Propfol. A liver was found but it wasn't good enough so they turned it down.
January 6th: My brain started to swell so they drilled a hole in my skull and put a bolt in my skull to relieve the pressure. They called it my unicorn since that is what it resembled. They were able to watch my brain waves and I was monitored by a neurosurgeon. They were unable to do surgery until I had zero pressure since pressure would cause brain damage. They also cooled my body to 90 degrees to help prevent additional swelling in my brain A second liver was found, a surgeon rushed to Stanford to look at it but it was determined to be a bad liver so they didn't take it. Nurses Mary, Emily and NP Tanya were my angels and worked all day and night to get me stable enough to survive surgery.
January 7th: The scariest day for my family and friends. I needed a liver bad yet all the ones presented were not good enough and I continued to be in bad shape. My brother was called and told he needed to be there since they were not sure how much longer I would live without a new liver. Basically, they thought I may die.
January 8th: At midnight, NP Tanya called Joe and my parents that they think they may have the perfect liver in LA. A surgeon was flying down to LA to look at it. At 7am, the best news came...the liver was a perfect match and I would be going into surgery at 9am. The surgery took 6 hours and the surgeon came out and told the waiting room of family and friends that the liver is working great and they could see me in 30 minutes! He also told my family that my old liver was totally dead and wasn't functioning at all. My donor, my angel truly saved my life. I think about my donor everyday and hope to one day meet their family to say thank you.
January 9th- 12th: I started waking up on the 9th and they took out my ventilator but discovered I went into pulmonary adema- fluid around the lungs and I wasn't able to catch my breath. They put the ventilator back in and sedated me until January 12. I woke up with the ventilator still in and I freaked out. The Dr's wanted to leave it in just to make sure I could breathe on my own. After about an hour of crying, I did hand motions to ask for a paper and pen and wrote my Dr a note begging them to take out the vent. They did and it was the best feeling ever!! I was starving when I woke up but they didn't even want me to have ice chips but later talked a Dr into letting me have some food. They gave me tea and an icee and it was the best thing I thought I ever ate in my life! My skin was already back to normal and no longer glowing yellow. I was still loaded with drugs so was quite confused and thought my surgery was the day before so Joe had to break it to me that it was actually 5 days prior.
January 13th- 14th: After keeping down food, they removed my feeding tube and my catheter. Physical Therapy came and got me out of bed and I ate breakfast in a chair. They got me to walk and on the 14th I was moved to the 6th floor.
January 15th-16th: I started to get fevers so they did a liver biopsy and determined I was rejecting my liver. I was scared but they said rejection meant my immune system was stronger than they thought and I recognized my liver was new so I was trying to reject it. They upped my steroids and that turned around the rejection. They also did a procedure called ERCP where they changed the position of a stint in my bile duct. I guess my bile duct is small so they used the stint to stretch it open. They will be taking out the stint in the next week or two.
January 17th-18th: I got the ok to be discharged on the 17th but since it was the MLK Holiday, the liver transplant coordinator was off and she needed to review my medicine with me before I was able to be discharged. After 20 days in the hospital, I was discharged on Tuesday the 18th.
Part of getting a transplant is that you need to stay within the city for follow up appointments so my new home was an apartment in SF.
