Wednesday, March 25, 2009

My Life With Hepatitis C & Liver Transplantation

I have Hepatitis C and became so ill I needed a liver transplant. I am so thankful and grateful for the liver transplant I received on January 6, 2008 that saved my life. Nothing in the world can explain how grateful, lucky, and blessed I feel to be alive. I am doing very well since my transplant, and enjoy every day that I am blessed to be alive. However, my fight is not over. I still have Hepatitis C. A liver transplant is not a cure for Hepatitis C. I am doing treatment now.

I first became ill with the Hep C when I was 20 years old, when I thought I had a flu that I couldn't shake off. Back then, in 1983, they didn't know anything about Hep C, and diagnosed me with Hepatitis B. I was quarantined to my home for six months, and my parents had to sterilize all my eating utensils, which now I have to laugh about because the doctors didn't know any better back then. The cause of my Hepatitis C is a mystery to me. I didn't have any of the risk factors.

I went along life just fine, until a biopsy I had in 1991 that said my liver had mild fibrosis. About 10 years later, I was no longer able to work. I would get so confused and didn't know what I was supposed to do, and I couldn't understand what people were telling me. I did accounting. Once I stopped working, my mind seemed to get some better, but I would get confused and wasn't able to pay attention much of the time. I think it was due to the liver disease, fatigue from the disease, and depression.

In 2004, the liver biopsy said I had cirrhosis. In 2007, when I had another biopsy, I was diagnosed with end stage liver disease, liver failure...decompensated cirrhosis with ascites (excess fluid in the abdomen), varices (tears in the esophogas), edema (swelling in ankles, feet, & legs), portal hypertension (high blood pressure in the portal vein leading to the liver), and an umbilical hernia caused by the ascites and portal hypertension.

I had the liver transplant evaluation in August, 2007. They said my MELD score was 14, and they start doing transplants at 15. They said my old liver would only last 3 to 4 months. My husband, mom, dad, and brother went with me to the evaluation. Support is very important to qualify for a transplant.

The MELD score is a scoring system used to determine where on the transplant list a person is placed. The three factors that determine the MELD score are Bilirubin, INR, and Creatnine. The MELD score starts at 6 and goes to 40. The higher the score, the sicker a person is. A link to the MELD score calculator can be found at:

In early October, 2007, I had to go to the hospital for two tests. These were two of many tests that had to be done to become a candidate for a transplant. One was a pulmonary test to have the arterial blood gases drawn. They take blood from an artery, not a vein. Next, pure oxygen is inhaled through the mouth with nose clips on the nose for 20 minutes. After that they draw blood from the artery again. The first arterial draw was simple, but the second one, she couldn't find my artery. It moved away and hid. My veins always did the same thing. Every time I had to have an I.V., they always had problems getting it into a vein. The second test was a dobutamine stress echocardiogram. This is where they put an I.V. in and take pictures with an ultrasound as they increase the dosage of the drug into the system to make the heart rate speed up as if excercising while laying down. They said my heart was very photogenic because they got some great pictures. However, when they put in the drug that slows the heart rate back down, which should only take about 10 minutes, it took them about an hour because my heart rate wouldn't go back to normal. What's really strange is that since they started, the faster they made my heart rate, the lower my blood pressure dropped. At the highest heart rate, my blood pressure was 66/32. I went in there with blood pressure of 107/68. When they finally let me go after giving me 5 doses of the drug to slow my heart back down, my blood pressure was 90/64. They wanted my heart rate to be below 100. It finally hit 99 just for a second, and fluctuated between 100 and 106 the rest of the time. I never felt light headed, nauseous, or as if my heart was racing. At the highest heart rate, it just felt like I had a little anxiety. The nurse said it isn't unusual for liver disease patients to have their blood pressure fall when the heart rate is increased.

Since the end of October, 2007, I started getting more and more nauseous. I have lived with nausea off and on for years, but it really started getting bad in October. There wasn't anything I really could do but vomit, and then I would feel better. For a while, crackers, ginger ale, and even green tea were making me feel better, but it didn't last long. I had anti nausea meds, but they didn't do much. They wanted me to start the treatment for the Hepatitis C before the transplant, but my body was too ill and unstable. My lab tests, such as electrolytes, were all over the place. My red blood cell counts were low. I gained 13 pounds of ascitic fluid in my abdomen since my first paracentesis (draining of abdominal fluid - ascites) at the end of September, 2007, and my herniated belly button was getting bigger. They removed 7 litres of fluid during that first paracentesis. It was such a relief afterwards, and I watched my belly deflate right before my eyes while it drained. I weighed 240 pounds at my highest before my first paracentesis.

On December 5, 2007, I was placed on the transplant list. My MELD score was 20 at that time. I had to go to the emergency room two days before that because I was vomiting blood, shakey, weak, and not able to keep my eyes open. I learned later that it was not a good sign. That is a sign of a possible coma approaching, which most people never come out of. My red blood cell counts were really low too as it had been for a while. As the days went on, I was vomiting every day, wasn't eating, and could hardly walk around the house.

On December 20, 2007, I went to the hospital to have surgery on my umbilical hernia. I was really sick. My red blood cell counts were dangerously low so I received 4 units of blood before I was stable enough to handle the hernia surgery. I got plasma, platelets, albumin, and whole blood, plus shots that helped my pancreas so it wouldn't have to work so hard. I got other medicines too, but I don't remember what they were.

On December 23, 2007, I had surgery to fix my hernia, and continued getting blood transfusions.

On December 26, 2007, I was released from the hospital. They didn't want to release me, but thought it would be ok as long as I had continued lab tests done at my local lab.

On December 28, 2007, I had to return to the hospital because my lab tests were at dangerous levels again. Back to the hospital we went, in a snow storm, driving very slowly. When I returned to the hospital, my bilirubin was 13 and it was 6 when I left the hospital two days before. When the bilirubin gets high, it turns your skin and eyes a bright yellow color (jaundice), which I had. Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal brown color. When bilirubin is high, it means the liver is incapable of adequately removing bilirubin in a timely manner due to cirrhosis. The normal levels should be between 0.3 to 2.0. My INR was 3.0, which is also high. The INR has to do with the clotting of the blood. Normal levels are generally between 0.8 to 1.2.

Before the hernia surgery, they drained 2-1/2 liters of fluid out of my abdomen, and another liter during the surgery. After the surgery, the surgeon said I had already accumulated more fluid in my abdomen. I had more drained the next day. The gastroenterologist at my local clinic was making me sick by giving me too many water pills, but he was trying to control the fluid in my body (edema & ascites). My kidneys were close to failing as well as my liver. I am thankful to him, though, for referring me to be evaluated for a transplant.

Shortly after I returned to the hospital, the doctors said that I needed to get the word out that I needed a healthy person with my blood type O to donate part of their liver to me, otherwise I would die before I got to the top of the list for a whole liver. Immediate family would be the closest match, so my brother was going to be tested to see if he was a match. He has the same blood type as I do, which is O+, but the person just needed to have type O blood, and the antibodies and different things have to match too. My husband, Frank, said a guy he worked with was willing to be tested too. The hepatologist told me that I had moved higher on the list, and I continued to get plasma and platelet transfusions, as well as electrolytes since my sodium, potassium, and magnesium were low.

When I first went back to the hospital after being released, I was in another part of the hospital instead of on the transplant floor where I was for my hernia surgery. The nurses weren't as good there. The first night I was there after returning to the hospital, it took 4 nurses and IV nurses to find a vein for the IV. My veins kept blowing. The next day I got 3 more litres of fluid (ascites) out of my abdomen. Then they started me on Lactolose, which is used when the ammonia gets too high. It is really sweet, syrupy, nasty tasting stuff that helps to get rid of excess ammonia through the stool (feces). They had to give me two doses and it didn't do anything but give me gas that made me miserable. They had to give me gas drops so I wouldn't be so miserable. They said I should have been able to go home then, because all my other labs were stable, but they had stool (feces) samples tested and it turned out there was blood in my stool. Needless to say, I did not get to go home. They then did an upper endoscopy (my second) and found some large varices and tied them off so they wouldn't bleed. The next day they did a colonoscopy. The hepatologist told me that because of all that, I had moved to the #1 position on the list for O+ livers, so the next O+ liver that came in and matched was mine. Obviously, I was not allowed to leave until I got a new liver.

Around 10:00 p.m. on January 5, 2008, I got a call on my cell phone telling me a match for a liver was found for me and I should get to the hospital as soon as possible. I told the lady on the phone that I was already at the hospital, so I was right where I needed to be. I was so ready for the transplant. I wasn't afraid at all, which is weird really, because I was scared to death of the hernia surgery. Before the hernia surgery, I never had any type of surgery done. My MELD score was 29 at the time of the transplant. The surgery went very well. It only took 5 hours. I went in at 3:00 a.m. on January 6, 2008, and was in the recovery room by 8:00 a.m. The surgeon told my husband that the new liver was a perfect fit, and it started making bile the second they hooked it up. I didn't have much pain after surgery except for my back, which I think was caused from the surgeons manhandling me on the operating table. I was bruised all over my arms, abdomen, all the way down to my hips and butt. I looked like I was in a bad accident.

A link to a video of a liver transplant can be found here:

After surgery, everyone who has a transplant is required to go to classes to learn about medications, lab tests and what they mean, what to eat and not to eat that would interfere with the meds, etc. I took approximately 25 pills a day for quite a while after the transplant, and the nurses quizzed me every time I had to take my meds asking me what each med was, and what it was for.

I developed diabetes after the transplant and had to receive insulin shots. It is very common for this to happen after a transplant. By the time I was released, I no longer needed insulin, but had to continue testing my blood glucose 4 times a day. Eventually, I no longer needed to test my blood glucose since it went back to normal.

I was released from the hospital on January 16, 2008. I have been doing very well since the transplant, except for when I injured my ribs and my liver function tests jumped. They thought I was going into rejection, but it turned out just to be from the injury and the Hepatitis C. I've had two liver biopsies on my new liver since transplant. The first was to determine if the hepatitis C was affecting my new liver. I have inflammation in the new liver, but no damage. The second biopsy was to check to see if I was going into rejection. That second biopsy caused my red blood cell count to drop 4 points. If it dropped any further, they would have had to keep me over night. I've been going for blood tests every week since the transplant and will continue to have blood tests done for the rest of my life, especially for the next year while I am on treatment. Of course, I have to take anti rejection drugs for the rest of my life.

I am currently doing the treatment for Hepatitis C. The treatment consists of a once a week injection of Pegasus (peginterferon alfa-2a), and daily pills -CoPegus (ribavirin). It is very much like chemotherapy. Some people, like Natalie Cole, like to call it chemo. The side effects are very similar. Although I had a liver transplant, the Hepatitis C continues to attack the liver since it is a virus that lives in the blood. Hepatitis C is the one that has no vaccination to prevent people from getting it. Hepatitis A and B both have vaccinations. Hepatitis C is very hard to make a vaccine for since it is constantly changing and replicating itself.

The treatment has made the virus undetectable since the sixth day of treatment. Hopefully, it stays that way so that it won't continue attacking my new liver. My viral load has always been very low, under 100,000, so the fact that it killed my old liver is rather surprising, but that's how liver disease is. You can't predict what will happen. I have a friend who has had Hepatitis C longer than I have with a viral load in the 6 million range, and her liver is in pretty good shape so far. Hopefully, hers will stay that way.

I have been very lucky so far during this treatment because I don't get the flu-like side effects that most people get while doing the treatment. I am having problems with my red blood cells staying in normal range, though. I have been getting shots of Aranesp to keep the blood cell counts up, but they aren't working very well. I had to have a blood transfusion three weeks ago, and continue getting the shots, but my red blood cell counts are still falling. My hepatologist said my hemoglobin "sucks".

I also have developed mild depression from the treatment, and my thyroid has become underactive too. I am now taking meds for the thyroid and depression. I have gained a lot of weight since starting the treatment. Usually people lose weight while on the treatment, but I guess I am weird. I have done 17 weeks, and have 35 weeks left until I am done. Then I should have my energy back. I can't wait!


Diane said...

Penny, thank you so much for sharing your story here. There is no telling how many people will read your story and learn about a malady that possibly affects them. The potential for saving lives is very real. Thank you for being so open and honest and real!

Many hugs.........


Lost said...

I found your blog after googleing live donor liver transplants, as my dad also has hepatitis c and chirosis and is being refered to a transplant clinic, I cannot thank you enough for writing this I understand alot more now about hep c and transplants and I truly hope you continue to make wonderful progress, please keep up with this blog so that all of us searching for hope may find you