Thank you so much for your support in this endeavor. I wanted to share with you the beginning of what started the year that I thought would be my last; 2015. These posts I am going to share are from my Caring Bridge site, when I started to journal. These words were a glimpse into my world as I was fighting to live. I was told in 2011, at diagnosis most people in my stage of disease would live approximately 3-5 years without transplant. We all know that God’s timing was perfect and I am still here! Thank you to my donor, Adam. Without his liver, I would not be here. "Thank you!" to you, my support team and most of all thank you God for your mercy & grace!
Transplant Evaluation - Journal entry — 1/21/2015
Last week I went to see Dr. Spivey, my hepatologist, due to the changes I was experiencing. Skin and eyes turning extremely yellow, extreme fatigue, and pain in my right side. Little did I know, I would be admitted to Emory that day. My bilirubin was 8 times a normal person’s and with the other symptoms, thus the journey begins, in my steps for liver transplant.
From Monday through Thursday, I underwent numerous testing. MRI, Eco-cardiogram, Pulmonary, and a 26 tube Blood Screen Panel, amongst a few others. I met with Hepatologist, Transplant Surgeons, Nurse Practitioners, Nurses, Social Workers, Pre-transplant Coordinators, and many others that will be a part of this next step I am taking.
I was released on Thursday with instructions with changes in my diet and protecting my body until the call comes when a match has been given to me.
For some of you, you may not understand the process, so I am going to explain to the best of my ability so that you might try to have a clear picture. When I was diagnosed in December, 2011, with Primary Biliary Cirrhosis, (PBC). I was started on the one medication, that is out there for my disease. We have been keeping close watch on my liver enzymes, until this point. Now the focus is on my MELD score. This is stands for Model End-stage Liver Disease. It is calculated by adding my bilirubin, creatinine,
INR, and if I have had dialysis. This number can range from 6-40. I had been staying at around 8-12, until last year I started slowly progressing until my MELD went to 21. For this region of the country, and at Emory, most transplants are highly sought at a MELD of 25. Different regions can be at a 30 for transplant. My doctors feel that after completing all of the testing and considering I am at an otherwise healthy state and a good candidate for transplant, that it was time to get me evaluated so that I could be listed, and start looking for a match. All of my testing came back clear and good and other than my liver issues we are moving forward. I have completed all testing, and paperwork to be presented before the Transplant Board at Emory University in Atlanta. They meet every Thursday. So, now I am waiting to hear from them and my insurance that I have been listed. At that time the process begins in searching for a match.
One of the hardest part in all of this is knowing that someone has lost their life and is donating a liver to save mine. A family somewhere in a hospital room will be saying goodbye to their loved one, while I am surviving due to that loss. This is hard for me. I have to trust that this is God's plan. I am so thankful for the wisdom and teachings that our medical world can accomplish. So, once I am listed, I am awaiting a phone call that it is time for me to come to the hospital, if the liver is a match and the doctors approve it then the transplant surgery will begin. The surgery is 5-8 hours long, and recovery for 1-3 hours, ICU for a minimum of 1 day, then to the transplant unit for 5-7 days. I will have 3 clinical blood draws per week and follow up appointments the first 4 weeks after released, and then go from there depending on lab results. I will be on numerous anti-rejection drugs, which will be reduced as I accept the liver, and will be on them from then on. I have a big mountain to climb to get to my reward, but with prayers and words of comfort and encouragement, I will be able to reach the top. Thank you all so much for your prayers, help and words of encouragement this far, I appreciate it more than you will ever know.
I cherish every moment with each and every one of you, my family and will try my best not to take anything for granted, and to take care of myself in a manner that would allow my new gift to last as long as possible.