My name is Adrienne and I would like to share with you my transplant experience.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.
Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.
My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.
We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…
I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.
The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.
Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.
In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.
I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.
Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me
LACK OF AWARENESS STOPS HEPATITIS C TESTING:
Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.
