Hey Guys n Dolls! I realized that in these few months of writing I never properly introduced myself. (This realization came to me because of one of FLAGC newest features “Power Stories” where you can tell everyone your story… Awesome feature BTW) So I figured you guys might want to know a little more about the person behind the liver articles… who holds such wisdom… hehehe (kidding)
Well, it all started on a dark and stormy night on February 17th, 1981 (just kidding… it could have been a nice sunny day for all I know… just being dramatic) Either way it doesn’t really start then anyways, though I will say, my poor mom really had a rough time with my childhood (besides the Hepatitis C… We didn’t even know about that one yet). I wasn’t wild, but boy, name a weird sickness and I had it. How many children do you know that have spinal taps, EEG’s, and other strange studies done before the age of 7? Doctors thought my mom was crazy with all the things I was tested for.
Most of it, though, actually started at the age of 12. I had gone in for years complaining of stomach aches and pains (which were usually diagnosed as gas) but finally we got a doctor who did the right tests, and just like that I was diagnosed with “Non Hepatitis A or B”, which is what they called Hepatitis C at that time. It was most likely passed from my mother to me during childbirth. Not much was known about it so nothing was really done for me – no diet recommendations or anything. One doctor actually told me that I most likely would not make it to my 21st birthday, but again, that was before they even had a name for it.
Later that year I was also diagnosed with depression (go figure). I still did pretty well until just out of high school, when I really started slowing down. I pretty much needed a nap every afternoon, and since my appetite started to go, lunch time easily turned into nap time. I still did the normal stuff and in 2000 was engaged to be married to my high school sweetheart. Since my Hepatitis was starting to really show itself, we decided to plan the wedding around the Hepatitis treatments (Riboviran and Interferon). Starting these treatments was a very hard decision and was especially tough for my mom to deal with, but I started anyway in July of 2001 and was scheduled to be performing my last injection just a few days before the wedding in 2002.
I will not lie, the treatment was not kind to me. I did loose a lot of hair (especially in the beginning), I had horrible nausea, and on most days felt like someone had taken a chisel to my bones. However, in June of 2002, 11 months after starting the treatments, my doctor decided that there was no use to continue, it was not working. After that, my health began to decline a lot faster.
In 2004 I went in with an even newer stomach pain. Turned out that I had an appendix that was ready to burst, some suspicious ovarian cysts, and some serious gallstones. The appendix came out that night, gallbladder a few months later, and with a little more exploring, some simple cysts and endometriosis were discovered (oh yea, everything but the kitchen sink). In the meantime, I was still doing as much research as possible on Hepatitis (in the back of my mind, I felt like I was on borrowed time – I was 23 after all).
My symptoms stayed pretty consistent, mainly just fatigue, nausea, occasional vomiting, and aching, until 2005 when vomiting suddenly became a daily routine, but it only took a week or two to realize that this was not my “normal” sickness. I was pregnant with my angel, my son River (one of the reasons I fight so hard today). It was a rough pregnancy (sick wise) but the delivery was even tougher. The day before River was born I had gone to my weekly check up, I was due in 3 weeks. My regular doctor was not there that day, so another doctor saw me. My blood pressure was pretty high, but I wasn’t too worried. It had been high the last few visits, and my doctor just had me lay on my side for a while until it went down, but this doctor did not like it. I was also very swollen, despite my lack of salt intake – I hadn’t worn my wedding rings since about my 6th month of pregnancy.
He had me check into the hospital that day, and by that night they were inducing labor. River was fine, but my blood pressure was just too high. The next day they decided to do a C-section, and it was definitely a miracle that they did, because it turned out that I had Placenta Accreta (where the placenta does not detach from the uterus wall.) If they wouldn’t have had me open, they probably would not have known about it until it was too late. They thought that they had it under control, but the next day I was still bleeding and they ended up taking my uterus out before they realized that the bleeding was caused from DIC (they call it Death is coming in the E.R.).
Needless to say, I didn’t wake up for another 7 days. The hardest part was knowing that I lost the first week of my only son’s life. Through all of this though, not one time was my Hepatitis revisited by doctors. My health became worse and worse, but endless trips to my doctor just got me more anti-depressants. Vomiting was almost daily by this time, and I hadn’t been able to wear my wedding rings since before my sons birth (2 years before.) When we look back on pictures now, we don’t know how we missed the swelling. I assumed my doctors knew what was best, and were doing all the necessary tests. They weren’t though, and my cirrhosis progressed.
Finally in late 2008, my (now) daily vomiting and sleeping habits were too much. I happened to be taking my little sister into an urgent care for a sore throat and decided to get some fresh eyes – a fresh brain on my case. I saw a Physician’s Assistant who didn’t think that it was depression or anxiety causing my symptoms at all and decided to do an ultrasound. What he found was Ascites. Finally doctors confirmed what I assumed (but too scared to confirm) for quite a while. My Hepatitis C had caused cirrhosis and was now causing liver failure – 28 years after being infected.
It took until January of 2010 for insurances to go through, tests to be taken, and the USC selection committee to all agree that a transplant was in my best interest. I was ranging between a MELD score of 14 and 17. My symptoms, on the other hand, made me feel like I was at a 30. I did not want to eat, I was always nauseous. If I wanted to do anything, I had to “conserve my spoons” for days (I was always exhausted). At the end there, because of the Hepatic Encephalopathy, I couldn’t leave my home much, wasn’t allowed to drive, was caught trying to bake potatoes in the cupboard, and was receiving monthly visits from the ambulance because of random bleeds I couldn’t get to stop or dehydration that left me unable to move. It was the hardest few years of my life. Even my son knew something was wrong. He would ask me why I couldn’t run or play, why I was always in the bathroom, and why I always forgot things. Since my son has an obsession with cars, we decided to explain it in terms he would understand. Momma’s engine needed to be replaced and we had to wait until we got the “part”. Thank God that wait wasn’t too long.
The doctors agreed that the risks of waiting any longer outweighed the risks of going through with the transplant, and I was blessed with a living donor. My husband’s cousin knew that it was getting bad and wanted to help. We decided that if it didn’t work out, or if she had any doubts we would not go through with it (no hard feelings) because it must be God’s will. However, everything fell perfectly into place and on July 13, 2010 I was given my second gift of life. It was one of the happiest days of my life. I woke up thinking clearer (even with the meds) than I had in years. I felt like a kid again.
It was bitter sweet though because we knew that eventually the HCV would need to be dealt with or it would damage my new gift. This last month we received the news, the Hepatitis C has already started to show itself again (much sooner then we had hoped, and I have had to apologize to my liver giver repeatedly for taking a perfect half of her liver and already damaging it!). Soon we will retry the treatments again (as it stands right now, I only have about of a 25% chance of the combo treatment working this time although, with my history, I seem to usually fall in the smallest percentile category – Which would be a good thing… this time. tehehe.
I am very hopeful, in whatever happens. I feel that I have come this far for a reason and I have so many things that I am grateful for that wouldn’t have happened, if things had worked out differently. There are a few things that I hope you can take with you from this lengthy story. First, always be your own advocate when it comes to your health (second opinions can be life savers) Second, No doctor can tell you how long you are going to live for. Third, NEVER GIVE UP! Fourth, never judge, my son was born with the Hepatitis C virus like me, and like me will probably some day have to deal with ignorant or just plain mean people who know nothing about this disease. Fifth and final, please donate your organs, don’t take them to heaven with you! Only good comes out of it. A final special thank you to my hero Nancy, I may not be here today to write this, had it not been for her selflessness.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.