Pittsburgh Day 5

I am not sure how to start this note today, except to say it was a hard day to say the least. We have today off, hopefully. Yesterday we started at the Liver Clinic, first person we met was Zola. Zola was born at Presby Hospital and then worked there her entire life, now she is volunteering. Her job was to place us in this little room and coordinate all of the people who needed to see us. This lady was VERY energetic, to say the least. Next person was a retired Dentist/now volunteer who had a liver transplant 20 years ago. He is doing really well now, he needed to take Melissa's picture for her medical record. (curious).... Then the Liver Anesthesia Dr. came in and he asked more questions, did an exam. The he talked about his part in the surgery. Every time someone comes in the room, they give us all the dirty details about what will happen, all of the complications that could happen and then end it with, IF you make it, your life will be so different. Extremely scary, yet needed for us to process what is really going on. He added a Pulmonary Function Test to the list. Next in was a blood draw lady, they have to a blood type test twice. She got her on the first stick. Yea...this is the highlight of Melissa's day. Then comes Dr. Paulo Fontes, Director and Transplant Surgeon, this man is beautiful.........he spoke so kindly, yet so honest to us about Melissa. He read her reports, added a few test, did an exam, talked about scars. He says he needs to know Melissa very well. He said, "We need a game plan, here it is. We need to make sure that the surgery is indicated, make sure it is safe, and then make sure it is do-able." Size will be an issue, she will need to be listed on the pediatric list as well as the adult list, pediatric donors go to pediatric patients first. Unless, it is a very small adult it will be a longer wait ....And he said, "Most Americans are all big and fat". He told us that the surgery will be very long. They will start with lines everywhere, both groins, neck, radial arteries, veins, etc...... They will do the heart first, it will take about 4 hours, when they are done they will leave her chest open and the Liver team will come in and asses the situation, hemodynamics, risks, complications and decide if they feel she will survive from a heart standpoint, and if she can tolerate the Liver surgery. If not an alternate would be on standby that needed just a liver and they would give it to them. At this point they would sew up the chest and send her to ICU, if she survives she would be right back on the liver list again. You can have two separate donors, it is just not ideal. If she is stable and looking good, the Liver team takes over for 7 more hours of surgery. He was happy to see how healthy Melissa is. Then he talked real frank about life. He said, "It takes a special person to live with this kind of sickness. Some people complain about a bad hair day. Waiting time for a heart is not so long, and being double listed bumps her up on the list. He said that we need to be prepared for anything, being called then again being sent home, even death". This is of a magnitude and complexity that we have not known, and believe me Melissa has been through a lot. He said, "We are playing Major league now." He said, "we have done 13,000 transplants here and there is no routine patient." Then he talked about outcomes and everything she needs to do for the rest of her life. ( Not room for this in this note). When he left the room, we all had a good cry. Wow, a lot to take in. Then Zola whisked us to the radiology department for Melissa's CT scan. She went to Interventional Radiology for a micro puncture IV that they put in under x-ray. She drank her gallon of barium, and off she went to get her CT scan. Judy, Tammi and I are sitting in the waiting talking, I hear them call a "condition c" which I had figured out already meant "code" here. They called it to radiology ct room, Judy and Tammi didn't hear it and I was thinking to myself, surely that is not her. A few minutes later they were coming to get us, I asked the lady, "does the doctor want to talk to us?", she gave me that hesitant smile, like I can't tell you, but something bad happened. When we all go to the door, she told us that Melissa was having a allergic reaction to contrast and they were taking her to the emergency department. We got in the room and I saw the scariest sight ever, Melissa's face looked like someone was chocking her, she was the brightest red you ever saw, her face was swollen, she was having severe chest pain and shortness of breath. Along with shaking and crying. She was so scared. I have not seen someone have an allergic reaction like that after being pre-medicated. There were 30 people in the room, which is very intimidating on this side of things. They quickly got her to the ER. While in the ER they did a EKG and compared to the one of the day before and it was showing changes. They immediately did more blood work to rule out a heart attack. They admitted her to the hospital and we slowly watched her get back to her normal color. All the tests came back normal and she felt a little better. She has recovered from this reaction physically, but emotionally she has not. We talked a lot about her dying and she is very scared to die. We all are very scared. I know at this point most people are saying, "keep positive, be strong, la, la, la" But fear is really big now and we are giving some attention to what is. Then we will regain our positive march. Judy and Tammi are taking the shuttle this morning and I am writing this note and then picking them up. I think that we all slept for the first night last night. We are looking forward to a calmer day, hopefully seeing a museum (that is what Melissa wants). Please keep us in your prayers. Thank you all for the continued words of love and support. Terri