My Name is Angie, I was diagnosed in 2000 with Hepatitis C, which came as a complete shock. I remember when I got the call, I could not believe it, I sat on my stairway and cried. I had been tired and had missed a lot of work, so I went to my GP and he took some blood and ran some test and it came back Hep C.
I was stunned, because anything I could have done to get this was when I was very young and it was so many years ago. I could not believe something from 25 + years ago, something I tried (out of youth and stupidity) could effect me this way many years down the road, no one knew back then that anything like this could happen, I mean way back in the early part of the 70's. But I also could have gotten it in the 80's, I had a couple of surgery's and had a blood transfusion and that was in N. California, I don't know how I got it, but I did and it was becoming and epidemic in the 90's and for me in 2000.
Immediately we made an appointment for my husband and my 15 year old daughter, and thank God, they were both negative. So I started my journey. I got with a specialist and had my first liver biopsy, it came back with a little fatty tissue and unbelievably, no HepC showing in my liver. So the Dr. basically said to stop drinking any alcohol and come back in a year.
LIVING IN DENIAL
In 2007 I started to get a lot of nose bleeds and my energy completely ran out, I had to quit my good job, I was sick too much, so I went to see my GP and he suggested that I go and get another biopsy, and I did. I got another phone call from my specialist and he said in a quite voice on the phone and "Don't have another drink, your biopsy has come back and it is showing significant scaring, you have cirrhosis of the liver!", again I was shocked and I again I cried and cried, I couldn't believe it, again I was still in denial, this couldn't happen to me, I'm not that sick, but when I went to see the specialist again, he said that he didn't feel qualified to help me I was "out of his league" having both Hep C and cirrhosis and that he wanted to go ahead a refer me to the transplant clinic in OKC, so when and if I needed a transplant, I would already be a patient there. So that is what we did.
When we got there for our first appointment I got Dr. G, they called him that because they had a hard time pronouncing his name, Garrakar is his name, he was a great guy, he had a good bed side manor, and his daughter was a drummer and so is my husband, my husband is a Professional drummer.
So, he ordered the usual test, ultrasound, MRI, blood test, I was not expecting anything out of the ordinary, but when he got the results back he completely blew my mind!, he said that there was a small " anomaly" on my liver and that he was 95% sure it was liver cancer! I was in shock once again! And then he said that "I should just be happy, because now I could be put on the "Fast Track" to getting a liver transplant, because you are automatically put at the top of the transplant list" and I said to him "don't you want to do another MRI, just to be sure?"( the MRI machine went down during my MRI and it took 20 minutes to reboot,) and he said no, that he was very sure (95% sure) so I was whisked away into the office of the Social worker.
I am sitting there in shock, again, crying my eyes out, and it seemed to me that the questions she was asking me were completely heartless and condescending, I had just been told they thought I had liver cancer! I was being honest with her on all of the questions she asked, and then she said that THC had shown up on my blood test and "How long had I been doing dope! I was looking at her like , did she just say that to me?, "dope" really?! I was made even more upset by her tone of voice. I was thinking "who is this women and why is she treating me this way! 5 minutes ago they just told me they think I have liver cancer! we made it through the meeting, she told me that I was to be randomly drug tested and had to attend AA 3 times a week and go to drug and alcohol class once a week for 8 weeks, I was thinking " is she crazy? if I felt good enough to do that, I would go back to work!" , but I knew I had to do what she said, needless to say, her we did not get off on the right foot. All the way home my husband and I cried, we live 2 hours away, it broke my heart to have to tell my daughter this and my mom and other family. It was very upsetting to everyone.
Fast forward 3 months and $50,000.00 later (they do all the test to make sure you don't have anything else wrong with you) they do another MRI and nothing was there! Again they said "I should just be happy because I don't have cancer!" I was thinking "Which is it? I should just be happy if I do and now I should just be happy that I don't!", I was very upset because of the anguish it put my family through. But at the same time I was very happy, I did not have cancer, nobody wants to hear the C word, it turns your life upside down.
So, I coasted along for 5 years with a MELD score of around 10. I would go every 6 months to do labs and consult with my doctor, who had changed 4 times in 3 years. Finally, I got with a Doctor who was caring and who knew what he was doing and who didn't act like he had never seen me before, when I came to see him.
Because I had Geno type 1a, I had not did the Interferon treatment and also because of having cirrhosis I had a 15% chance of it working. I had known that a new drug was coming out in 2012-13 and been waiting anxiously for it. But, around 2011 things started to go awry, first a little more bowl problems, and then I had to have my veins in my esophagus banded. I start to have ascites more and then I started to forget things and my balance was off, I didn't know what was happening until I was very sick, and had been for a couple of weeks, sicker than normal.
One night I called out to my husband, who was just on the other side of our bed, and ask him to come and help me get up out of bed, so I could go to the bathroom, so he came over and tried to help me up, I could not get up, he tried to sit me up and I would just fall over, I was going into a coma, from encephalopathy, he called 911 and I don't remember much after that, I vaguely remember the EMT asking me to try and help them get me down the stairs, which I could not do, then I woke up in the ER when they were trying to put a tube down my nose, these two nurses, I have never screamed louder in my life!, TELLING THEM TO GET IT OUT! and they kept saying no, they had to get It in, the last thing I remember is pulling it out and throwing it across the room! I passed out and didn't wake up till the next day. It was like I had a stroke, I couldn't drink from a cup, or hold a spoon to eat or dial the phone. My mom who was not well at all came to see me, and I will never forget the love and the fear in her eyes, she thought she was going to lose me. They put me on Lactolose and it cleared up and I went home the next day, and that was the beginning of my life with Lactolose, I was still a little foggy headed and would lose my balance and fall, this was weird for me because I've always been athletic.
When I went to see my Doctor in the city a few weeks later my MELD had jumped up to 17, I was scared. I started with all of the physical exams again and was on my way to getting on the Transplant List. I made it through, I had did all my test everything was A-Ok and I was attending my AA meetings, and thinking I would probably be waiting a year or two before I would have a MELD high enough to really be inline for a new liver. But time was not on my side, I didn't realize how delicate the situation was, how one thing could tip me over the edge.
June 14th 2013, my husband and I attended an outdoor concert by the lake in OKC, it was a beautiful evening, we had a lot of fun with our friends, my husband John, was book signing. After the gig was over we headed toward our car and I was talking with a friend as we were walking, and I didn't look down to see the curb and I tripped and tried to catch myself, but couldn't, and I broke my tibia and sprained both ankles, but made it to my daughters house near by. After that, everything becomes a blur and I do not remember much. My husband had taken me to the hospital in our home town, were they gave me pain medication and a wheel chair and a walker and sent me home. My husband describes the next week as one of the worst in his life, I had gained a lot of weight over the last 3 months, I am usually 155 and have been down to 117 a couple of years ago, but I was up to 208, a lot of water weight, and he was try to lift me out of bed and I was not helping, I can't remember any of this, but I guess I got bronchitis on top of being out of it on pain killers and apparently encephalopathy, I had a panic attack and I said I couldn't breathe, and that's when he realized I needed to go to the hospital. After trying to get the local hospital to take me up to OKC in an ambulance, they said I had to come to their hospital, of course, and then send me, he decided he would just try to get me in the car and take me himself, and he did.
NAHZI ZHUDI TRANSPLANT
BAPTIST MED CENTER OKC
I cannot remember this, but I was admitted to the hospital my MELD went up to 39, I was in the hospital for a week and my kidneys began to fail and they put me on dialysis and soon decided I needed to have a liver transplant, or I would die within the week. Of course, I was so completely out of it, my daughter tells me I was doing some very strange things, I didn't even know who they were most of the time, I would look right through them, I would be talking to some one, who no one else could see, but I was having a conversation.
On July 2, 2013, my surgeon, who is a phenomenal surgeon and person, came in an told my family that they had found a liver and that it was on it's way from Houston Texas, that a young women, only 24, had a car accident and had passed away and it was her liver that was coming all the way here, for me, to save me. (I am still just totally blown away by all this, and how I wish that it could have been the other way around, but I am so thankful too, it's all very confusing sometimes)
The surgery started on July 2 in the evening and ended 7 hours later at around 3:00 am, it was my husband John and my 30 Anniversary! Everything went well during the surgery, but after the surgery something was wrong. My temperature shot up to 105 for 7 hours, they couldn't figure out what was wrong, then my heart slowed down and had to shock me to get the rhythm back like it should be. They gave me medication that is for Malignant hypothermia and everything got back to normal, but they thought they might lose me there for a while.
NDE (Near Death Experience)
This were everything gets really weird....
All of a sudden, I was in complete darkness, all alone, like some one turned all the lights out and everyone else disappeared. The darkness was not a scary darkness , it was actually kind of beautiful indigo blue. I didn't feel afraid, but I was thinking "where did everybody go?' and I said that out loud, and no one answered, then I said "Ok this is not funny anymore" and still no one answered. Then I thought "Ok, what is going on here? am I dead?! or what is this?" I t remained dark and quite for a while and then a small green light appeared in my field of vision at one corner on the left and it was brilliant against the dark and I thought "OK! Alright something is happening! this is very good! and the light made its way all the around and back to where it started, and then it changed color to a light blue, and made its way around, the same way as the green, then it was yellow and then red.
Soon after this, I was taken out into the universe, as it seemed, and I was suddenly on this planet that was void of any green thing and it was rocky, everywhere, it was just pile of rocks and rubble and mountains of rock, there were some type of beings at the top of one of the mountains, they seemed to observing me, they appeared ominous, but they never bothered me. I cannot recall everything now that happened, but I remember there was some very important information about the universe and the way things work and are linked to God.
But I was searching for some one, anyone that might be a human type being. And after wondering around for awhile I finally came to a small dwelling, like a small house. I looked inside and no one was there, so I waited outside, hoping someone would show up. Eventually, I saw someone walking towards me from a distance, and when they got closer, I I could see it was a old women, who was very weathered looking, as she got closer I expected her to say something, but she didn't, she looked at me but just kept on going without a word. I thought this was very strange. I waited longer, then someone else approached , and it was a young man, he looked in his 20's and he as he passed, he looked at me and said "What are you doing here?" and I said "I don't know" and he said nothing more and kept on walking. I thought "this is very strange" so I left that place and was wondering around on this rocky planet, and then I was taken from there further out into the universe. There was a beautiful city made of, as it were, transparent gold, and what I perceived as God the Creator of all things showed me different signs and symbols that represent his infinity and he revealed to me, telepathically, I suppose, that He IS infinite and we his creation are infinite and that what he creates no one can truly destroy. That (to get to the point) what he wants from all of us, is to Love one another, to take care of one another, to forgive one another, and striving for material things will not draw us closer to him. He related to me that I have things to do for him down here on this earth, that I will accomplish before I enter into that side of reality, he showed me much more, but it hard to explain, the more time passes I remember less, plus my memory isn't working like it use too.
I WOKE UP AND I HAD A LIVER TRANSPLANT!
Wow! I didn't even realize what had happened until I woke up in ICU. I had been given a second chance at life! I owe so much to so many, starting with my Donor family! and my own Family, who I love so much no words can say the way I feel, my Surgeon and his great team, and all the nurses who took such good care of me, even when I was not co-operating and Friends I never new I had, such good friends, I love you all, I thank God for loving me and I look forward to eternity with him, but I am so glad to be here on our beautiful Earth, I have to heal and it takes time, but I will get there. My Momma, my Beautiful Mom, passed away Oct. 24, 2013, she lived long enough to see me make it through, and I couldn't save her, and I miss her so much it hurts, but I know she is in a place filled with beauty beyond words and in the infinite love and light of GOD she abides and I will see her again, someday, but not right now. I am so happy I can be here for my daughter and watch over her for a while longer and be with my beautiful John, who never left my side through all of this. 30 yrs. SO HAPPY TOGETHER
I know this is a long tell, but I hope that it might help someone who is on or will be on the transplant list.
I can never thank my doctors and my Surgeon Dr. Duffy and his team enough, and all of the other doctors and nurses that continue to watch over me and help me day by day. I pray many blessing for everyone, be strong and hold on and please help yourself, by listening to your Doctor and keep the faith.
Happy and blessed Christmas! and a Happy New Year 2014!