Yey! I finally got through the phone system to the Gastroenterology and Liver Disease clinic at UCSF and was helped to make an appt for Ed with Dr Bissell, Chief of the Dept and Director of the Nathional Institute of Health Liver Center. San Francisco here we come - February 23rd!! Can't Wait!!!!!!
Why so excited? Ed has the best doctors at UC Davis with the exception of one - Dr. Rossaro, who unfortunately is a Hepatologist at the Medical Center and who is in charge of coordinating Ed's treatment. It is up to Dr Rossaro if Ed sees another specialist such as a specialist in radiology cancer treatment, or is sent for evalulation for liver transplant. Dr. Rossaro decided a long time ago that Ed would not get the treatment that would save his life. In my perception he did not think that Ed was worth the effort. As a matter of fact I hold him responsible - he let more than a year go by without ordering a scan knowing full well that cancer was the next step in the progression of liver disease. At our last appointment with him he had an intern come in and tell us that there was no hope and that he would make a referral for hospice services. Explanations of why Ed was not referred for liver transplant were short and unclear. Ed then got progressively worse. He did not eat, his legs were swollen, and he had trouble breathing. Even his skin hurt. I had to stop working and take care of him. Set an alrm for eating and taking his medicine because otherwise he would sleep through the day. When I saw that he was slipping away and I talked to him. I told him that I was not ready to lose him and asked him if he wanted to get better or did he want to be medicated and made comfortable to wait for death. He said that he wanted to get better. I told him that we would do this together but we needed to think as if we already survived this and need to be and always appear STRONG AND CONFIDENT.
I was not ready to allow Dr. Rossaro to interfere with our survival plan. We needed a second opinion..as I looked at other options I found UCSF. Our family is very familiar with UCSF as our kids and grandchild have been treated for kidney disease there. I donated my kidney to my granddaughter in 1996. As I read about their Liver Disease Clinic and expertise I found that Ed should have been referred to UCSF for liver transplant at the first sign of cirrhosis. We fired Dr. Rossaro and requested a helpatologist from UCSF. It is difficult to go through this process but strong and confident and the appointment is set for February 23rd!!!
Ed did dishes, picked up around the house, and went to eat at Round Table Pizza with me yesterday. Today he is a bit tired and in a little pain but strong and confident we will continue on the road to better medical treatment. I would like to say that I thank God for Dr. Tanaka, Oncologist, who always spoke to us with the facts but never never gave up. We owe him so much grattitude!www.ucsfhealth.org/clinics/gastroenterology_and_liver_disease/