The Illness

THE ILLNESS

Sometime around late 1998 or early 1999, I noticed that when I cut myself or scratched myself it would seem to bleed longer than I thought it should have. I remembered that when I was very young I would get excessive nosebleeds. I had rheumatic fever when I was growing up (as did my dad when he was young). I assumed that was the reason for the excessive bleeding.

One day I was out helping my next door neighbor build a deck out in back of our condo. I was sitting on the decking as we were adding the wood floor and in so doing I picked up splinters on the side of my calf. My leg got all red and irritated, but I managed to remove most of the slivers.

That evening, I was sitting in my recliner, as usual, watching the tube and I began to develop a fever. The area of the leg where the splinters were felt very warm as well. The fever wouldn’t subside after applying cold packs on my forehead and taking Tylenol, so the next morning Linda took me to the emergency room at Good Sam Hospital. They gave me a tetanus shot and sent me down to radiology to test for a blood clot. Everything checked out fine there, so they sent me home with a prescription for antibiotics and told me to keep a watch on it.

Over the next year or so I began to notice some swelling in my leg and foot. My primary care doctor put me on Lasix (a diuretic) and a low sodium diet. I had developed edema. Edema occurs when tiny blood vessels in the body (capillaries) leak fluid. This leakage can result from damage to or increased pressure in the capillaries. When the body senses the capillaries are leaking, the kidneys begin to retain more sodium and water than normal to compensate for the lost fluid from the blood vessels. This increases the amount of fluid circulating through the body, which causes the capillaries to leak more. The fluid from the capillaries leaks into the surrounding tissue, causing the tissue to swell.

Due to this edema, my doctor severely reduced my salt intake – no more pepperoni and green olive pizza. No more ketchup. No more pasta sauce. Linda had a huge tomato garden that year and she knew how much I loved my pasta, so she decided to make her own sauce using our homegrown tomatoes, since most canned tomatoes are loaded with sodium. She peeled and blanched a ton of tomatoes and made several batches of sauce. It was a lot of work – truly a labor of love. The sauce turned out awesome.

My health started going down hill at a noticeably more rapid pace in the spring and summer of 2002. I was always tired and had no energy to do anything and the swelling was getting worse.

The Saturday of Labor Day weekend, we had a cookout at our house. Our guests were over, the burgers were on the grill - and my head was on the table. I was sound asleep. I could not stay awake. I was finally able to get myself into the house and onto the couch where I proceeded to sleep for the next day.

I woke up with chest pains so bad that my ribs and chest cavity were so sore that I could not get up on my own. The next day we were supposed to go over to my dad’s for our annual cookout. I didn’t have enough energy to even give that a thought. I slept all that day and all the next day, which was Labor Day. I was sleeping 22 out of 24 hours and had no appetite.

The next day, Linda called my doctor and he instructed her to take me in to the emergency room. They took X-rays and I was diagnosed with bronchial pneumonia. I had fluid in my chest cavity. They kept me there for a day or two and sent me home.

I then began to swell up everywhere. It became very difficult to get up from a chair or to move about. Going to the bathroom was quite a chore. It took every bit of energy I had just to get up the stairs to go to bed at night.

My internist sent me for all kinds of blood tests to determine what the heck was wrong with me. It was a real head-scratcher. Nothing showed up on the test results. I was referred to a hematologist and he administered a bone marrow test, which scared the heck out of me – the thought of that huge needle being inserted into my back. I do not like needles at all. What got me through the procedure was the fact that my sister-in-law, Georgine, had died from leukemia just a few years prior and I know that she had to have many, many bone-marrow tests done and I never heard her complain. I had no right to be a wimp. Well, that test came back negative and so we were back to square one.

As a member of the VFW, I receive their national magazine every month. I had remembered reading an article about a veteran who served in Vietnam who had been recently diagnosed with the Hepatitis C virus (HCV). He had served in Vietnam in 1969, was wounded, and was given blood transfusions. It was determined that the virus was in one or more of the units of blood he had received via transfusion during surgery. Prior to 1992, blood was not being tested before being used in transfusions. The article went on to explain that this virus can lay dormant for 30 years or more and could be detected by way of a simple blood test – a specific blood test for Hepatitis C. This blood test was not one of the usual tests given during a CMP or CBC.


I showed the article to my doctor and he immediately ordered the HCV blood test and, sure enough, it came back positive. I was then referred to a liver specialist, Dr. Payne. He examined me and told me that I indeed had HCV and that I was also cirrhotic. He explained that my most likely option would be a liver transplant due to the fact that I was in stage 4. There are four stages of liver disease, stages 1-4, with 4 being the worst. Stage 4 is more commonly referred to as End-Stage Liver Disease.

Had I been in stage 1 or maybe even stage 2, I might have been given the option of entering the treatment program. It was never offered to me because of the advanced progression (more about treatment options later on). I honestly do not remember what the specialist told me I should do next. Things started going downhill rapidly and I began to feel worse.

Symptoms of Hepatitis C (non-inclusive):

*  fatigue 
* vomiting 
* muscle aches 
* easily bruised 
* low-grade fever 
* nausea 
* loss of appetite 
* yellowing of the skin and eyes 
* abdominal discomfort 
* weight loss 
* fluid retention 
* mental confusion

Linda had been talking with my primary care doctor on a regular basis and we made several trips to Good Sam Hospital for two or three days at a time. The problems that I had been experiencing that kept me in the hospital included extremely high ammonia levels and very low potassium levels. They had to administer supplements intravenously. The doctors would not let me go home until the levels reached a certain point. Once I cleared that hurdle, they sent me home with prescriptions for ammonia and potassium pills and restricted my sodium intake, but the oral medication was not getting into me fast enough to work properly, so I would return for another two or three or four days for the IV. I was also given several units of plasma later on.

On a less serious note, my niece Stacy, worked as an emergency room nurse at Good Sam. During my visits there, she would often stop by to visit and ask if there was anything I wanted. We got to talking about the food there and I mentioned that I sure did like the Jell-O there, but they do not serve enough green Jell-O for me. For most people who stay at the hospital, any green Jell-O is too much. It happens to be my favorite. So being the terrific care provider that Stacy is, she began making me green Jell-O at home and bringing it in to the hospital! I will never forget that because it meant so much to me at the time.








I was then referred to a hepatologist, Dr. Donald Jensen, at Rush University Medical Center (then Rush-Presbyterian St. Luke’s Hospital). He determined that I had ascites. Ascitic fluid had leaked from the surface of the liver and intestine. A combination of factors were responsible. They include portal hypertension, decreased ability of the blood vessels to retain fluid, fluid retention by the kidneys, and alterations in various hormones and chemicals that regulate bodily fluids. This fluid needed to be removed. Ascites can cause a great deal of pain, difficulty in breathing, and it affects how well the kidneys work. The Lasix was supposed to keep this in check, but the fluid was accumulating faster than my body could remove it naturally. He then performed a paracentesis in his office. What that involved was numbing an area of the abdomen and inserting a long, thin needle into the belly and draining the fluid. I think he took about two liters at that time. He referred to my abdomen as a giant pumpkin.

During all of this, Linda’s grandmother was in declining health. She was in a hospice situation at home and had a nurse staying with her. After a fairly lengthy battle, she finally passed away in peace and without pain. I wasn’t much help to Linda, or myself either during all of this. It made me feel guilty that I was of no help either physically or emotionally.

I wanted to go to the wake, but I was so swollen that I had no clothes that would fit other than sweat clothes. So Linda spent an incredible amount of time on the phone looking for someone who carried a size 15 shoe - my foot was so swollen. Then I needed a pair of pants with a waist that was much larger than what would normally be carried in a regular clothes store. I think she ended up in Villa Park at Omar the Tent Maker. Anyway, it was a real ordeal. Then Linda called my barber and asked him to come to the house and cut my hair. Then it was in to the wheelchair and off we went to the wake. I realize it was a real pain to get me there, but I’m glad we took the effort to do so.

In late October of 2002, my health was rapidly going south. I was in Good Sam Hospital and Dr. Payne told me that it was time for me to decide whether or not I was ready to accept the fact that a liver transplant was the only thing that could save my life. It was at that point that we gathered my family together and explained to everyone just what exactly I was facing. I signed a Power of Attorney form and a Health Care Directive form. It was a very emotional time.

During one of my doctor’s appointments in between my hospital stays, my internist, Dr. Klickman, asked me if I had made peace with my maker. That one had caught me off-guard! I replied that I hadn’t given it any thought. He said, maybe I should think about it. What I had been going through was life-threatening and that he felt that I should be prepared for the worst.

I was developing hepatic encephalopathy. This is a condition that occurs when the brain and nervous system are damaged through complications of liver disorders. Some neurological symptoms include various changes in consciousness, behavior, and personality. I was lethargic and had trouble remembering my name or Linda’s name. They tested me on this often to determine how bad the encephalopathy was. I remember watching the Bears/Packers football game one Monday night at the hospital and having the doctor come in the next morning and asking me who won and what the score was. I couldn’t come up with it. That was the real test. I’m sure the Packers must have won, though.

My ammonia levels were skyrocketing. When the body breaks down red blood cells, bilirubin is produced, and when the gastrointestinal tract metabolizes protein, ammonia is produced. A failing liver doesn’t filter those chemicals and eliminate them. High bilirubin levels produce jaundice, and elevated levels of ammonia accumulate in the brain, producing confusion, coma, and death.

It was then the doctors decided that I needed to get escalated care and I was taken to Rush University Medical Center by ambulance in the middle of the night. Linda and her mother followed the ambulance. I was admitted and given a battery of tests to determine exactly where I stood with this horrendous disease. I was a potential candidate for a liver transplant, but in order to determine if my body could stand the rigors of this intense surgery, I would need to pass a series of tests. These tests included either a CT scan or MRI (I don’t remember which), blood analysis, ultrasound, EKG, liver angiograph, a peritoneoscopy (an examination of the abdominal cavity), upper and lower GI series, a renal function test, a cholangiogram (bile duct scan), a pulmonary function test, and a psychiatric evaluation. I had a team of 8 doctors that ordered and evaluated my test results. Once the tests and consults were completed, my case was presented to the Liver Transplant Selection Conference that met once a week.

There are two criteria that need to be met to determine candidacy for a liver transplant and includes, but is not limited to:

* The presence of end-stage liver disease, which cannot be cured by other medical treatments
* Negative HIV test
* Stable support system, such as family and/or friends
* At least six months abstinence from alcohol and substance abuse
* Full understanding of the transplant process
* Ability to understand and demonstrate compliance with the medical care required
* No active infections
* No active cancer, with the exception of some liver tumors
* No other medical conditions that will interfere with recovery from a transplant (such as heart or lung disease).

Next, the team decides the candidate’s category. These include:

* Accepted – the person meets the criteria for transplant
* Deferred – the person does not meet the criteria for transplant, further testing or treatment is necessary
* Declined – the person does not meet the criteria either due to medical or psychosocial reasons.

Well, I passed with flying colors.  I was a definite candidate. I had passed the scrutiny of the Selection Conference and was given the green light to proceed. The hospital had been given the approval to proceed from my insurance company. There was only one person standing in my way – my Social Worker. Her name was Charlotte and I will never forget her. She needed to be convinced that I had not been using alcohol for nearly a year prior and that I would not drink any alcohol ever again. She wanted me to attend AA meetings, a VA counselor, a support group, or in some way convince her that I was not going to abuse the miracle that I was about to receive. Linda and I met with her on several occasions and I made her, as well as my surgeon, Dr. Dodson, a promise that I would never drink alcohol again. I have not, nor will I ever, break that promise.

During this time, my abdominal cavity continued to fill up with fluids – the ascites. Ascitic fluid is an accumulation of fluid in the peritoneal cavity, most commonly due to cirrhosis and severe liver disease. These fluids needed to be drained. I was taken down to radiology and had a paracentesis performed with the guidance of an ultrasound. The needle, along with a vacuum tube hooked up to a 2-liter bottle (like a pop bottle) is inserted into the abdomen. I would have two or three 2-liter bottles drained every day for several days in a row.

During all of this, Linda realized how serious the whole situation was and that there was a definite possibility that things could go wrong and that it was important that my sons be near. Since my divorce, I had a distant relationship with my sons. I knew they resented my being the reason we were no longer one happy family living under one roof together. It broke my heart, especially since I never shared any details as far as my side of the story concerning the divorce with them. I just kept it to myself and left it at that. But, I was fortunate to have been able to keep somewhat in touch with Chris around that time, but Brian had been away at school and I did not know his exact whereabouts. We hadn’t been in touch for a long time. Linda contacted Chris and explained the situation and they began playing detective looking for Brian. I had some friends on the police force that I believe may have been called on to assist with the search. Anyway, one day while I was spending a getaway weekend at Rush Medical Center, I was shocked by a visit by both Chris and Brian. It was one of the most incredible moments of my life.

On November 1, 2002 I was officially put on the waiting list for a liver transplant and sent home with a pager. I was to stay close to home and my Transplant Coordinator would be in touch. There was no way of knowing how long the wait might be - days, weeks, months, or even years. Unfortunately I did not have long to live without this life-saving transplant. I was in a near-coma stage of the encephalopathy and I was given only a few short weeks to live. My spleen was enlarged and my liver and kidneys were beginning to shut down.

The process that determines who gets an organ and when, is determined by a Model for End-Stage Liver Disease (MELD). This is a numerical scale used for liver allocation. These scores are based on the patient’s risk of dying while waiting for a liver transplant and are based on objective and verifiable medical data. In other words, those who are the sickest move to the top of the list.

According to the United Network for Organ Sharing (UNOS), there are approximately 97,000 people currently awaiting transplants in the United States and roughly 7,000 will die each year waiting for an organ. As for liver transplants, approximately 68% of the patients will wait at least a year, 38% will wait over three years, and 22% will wait over fivr years for a liver.

So, I was sent home with nothing to do but wait for a call. We had arranged for a hospital bed to be brought to the house because I could no longer get up the stairs to go to bed. We had it put in the family room where Linda could spend all of her ‘spare’ time nursing me. I was a real joy to be with back then. One of the many medications I was given was Lactulose. This is a horrible-tasting yellow liquid laxative that I needed to take something like four times a day. Its purpose was to keep the system cleaned out in order to remove the excess toxic ammonia. The bed’s close location to the bathroom was a blessing, since I was not moving very quickly – not by a long shot. My leg was extremely swollen due to the edema and I was very weak and bloated.

I had trouble breathing with all of the fluid in my abdomen, especially at night. Linda would rub my belly at night so that I (and she) could get to sleep for an hour or two at a time. She would sleep on the couch at night to be near me in case I needed anything.

I had found out that a good friend of ours, Reverend John Steer and his wife, Donna, were going to be in the area over the weekend. John is a highly decorated Vietnam veteran who lost an arm in the Battle of Hill 875, as well as being shot numerous times in his right leg and shoulder, shrapnel in his left thigh and chest. Hill 875 was one of the bloodiest battles of the Vietnam War. It was the single largest battle of the war and 287 American were killed. John had later been awarded the Silver Star for his heroism in that battle. John and his wife, Donna, travel across the country singing and speaking to veterans groups. He is very well known and highly respected around the U.S. They also ran a homeless shelter/halfway house in Arkansas. So I called John and explained to him my situation and without giving it another thought, he and Donna came to our house that Friday night as well as a few other close friends, some who drove two hours to come. We ordered pizza and reminisced over the years we all had known each other. It was eerie in a way, but I knew I was amongst friends. It meant a lot to me and it helped to take my mind off of the situation.

The next night was our annual VFW Veterans Day Dinner Dance. We had arranged for a wheelchair and decided to give it a go. I was weak and tired, but being around my veteran friends seemed like the thing to do. Everyone was really nice and offered to help with anything we needed. I was glad I went. Three days later, I got the call.

My pager went off at 11:00 a.m. on Veteran’s Day, November 11, 2002. My number was up and they found what they hoped was a compatible liver. It was in the process of being transported to the hospital. Linda packed up a few things and we headed to Rush. There was a bad storm that day and Linda could not see out the windshield as the wipers were shot. We had to stop at a gas station and beg to have someone change them for us.

I checked in and was sent up to the liver surgery ward to await further testing and to prep for surgery. I remember at the time that I was not scared, but I was very anxious. I just wanted it all to be over. Linda and I waited for what seemed like forever. The next thing I know, a man walked into my room and introduced himself as Carlos. He had received a liver just a week or so prior and was waiting to be sent home. I thought that was pretty fast recovery from such a major surgery. He explained to me what to expect and that I should not worry about anything. The fact that he was up walking around and ready to go home was amazing to me. He gave me hope and inspiration. I got strength from him just from that brief visit. It was like an angel had been sent in to take care of me.

I was taken down to pre-surgery and my family was all there waiting for me. Dr. Forrest Dodson, my surgeon, came in and explained to all of us what he was going to do and how long he expected the surgery to last.

The time was near and they began to wheel me down the hall at 11:00 p.m. They let Linda follow for a little bit, and we hugged and kissed and I told her I would see her soon. I held up four fingers as a gesture that somehow stood for the competitiveness, endurance, and determination that my football hero, Brett Favre, represented. I needed all of my mojos working for me that I could find.

I was told that the surgery lasted around 4? hours and I woke up in ICU with endotracheal tubes down my throat, IVs everywhere and feeling very groggy. I had several IVs in my right hand/arm and I remember my dad said that my right hand looked like the size of a boxing glove due to the swelling. I spent two days or so in ICU that was more uncomfortable than anything else had been up to that point. It was very cold in that room and I was right under an air vent. I had been draining fluids from tubes in my abdomen, but the incision was leaking and I was lying on completely soaked sheets for two entire days not being able to keep warm. I couldn’t be moved very easily in order to changes the sheets, either. They had to bring in a special portable heater just to try and keep me warm.

On Thursday, I was finally able to be moved to a private room. That Friday night, Linda had a big event that she had been planning for her job (mostly working from the hospital all week) and she had to attend. Kathy had stayed with Linda for all the time she could, and then Cindy and my nieces drove up from Kentucky to be with me. She asked if there was anything she could bring and I said, “How about some chocolate bars and cans of coke”. She loaded me up and I supplemented my soup and whatever they called dinner with that.

As it is with all post-surgery patients, the nurses would come in every couple of hours and take vitals. Due to the anti-rejection medication I was prescribed, they also checked my blood-sugar levels every few hours. The medication wreaks havoc with blood-sugar and they kept an eye on the levels because diabetes is one of the side-effects. Either they did not mention that to me or I was just plain old stubborn (or stupid – your choice). Well my blood-sugar levels went sky-high and they had to inject me with insulin every few hours around the clock. This went on for a couple of days before the old 2x4 hit me in the head. Maybe I should quit eating the chocolate bars and drinking the coke! I never made the connection. My defense was that I was taking all kinds of new medicine and I was whacked out. I’m sticking to that story. Once I gave those up, my levels came down to acceptable levels and I convinced the doctor not to send me home with syringes and insulin.

One of Linda’s favorite TV shows at the time was Touched by an Angel. I would usually watch it with her with one eye open while reading the paper, so I at least knew the gist of what it was all about. Once, during recovery in the middle of the night, I began to hear a deep voice at the foot of my bed calling me – “Robert…Robert...Robert”, with a voice as deep as James Earl Jones. I honestly believed that this was the Angel of Death coming for me. I quickly sat up in bed, only to realize that it was a huge African-American male nurse coming to take my vitals. I cannot describe how strange that felt.

I am not an overly religious person, but I do believe in God and I live an honest life. I asked my dad if he would bring the family bible with him one day when he came by to visit. Actually, I think it might have been his idea. Anyway, I began to read Mathew and was amazed at how much it made sense. In fact a lot of it was apropos for my situation. Weird. I get most of those bible answers right on Jeopardy now.

I don’t know if it was all of the coke and chocolate bars I had been ingesting, but I had trouble sleeping at night. I was upside down with my hours. I could only watch the Fonzi at 2:30 in the a.m. for so long. So I would go for strolls in a wheelchair in the middle of the night. Believe me, it was a real workout – surgery takes a lot out of you. It turns out that there just wasn’t that much to see in the middle of the night in a surgical ward, so I finally talked one of the nurses into letting me use a computer near the nurse’s station at night. Since I probably wouldn’t be able to drive for a while once I got home, I decided to do all of my Christmas shopping on-line that year. I scheduled delivery for everything for a time when I knew I would be home. It is a practice that I continue to use to this day.

It is a very strange feeling going through the illness, the surgery, and the recovery process. It is incredibly emotional – not only for me, but for my family, and in particular, Linda. She shared every single moment with me from the very beginning. She talked to the doctors on the phone and took me to all of my appointments. She fed me, gave me my medications, put up with my medicine-induced moods and stubbornness. She stayed up with me at night when I was in pain or couldn’t sleep. These were very trying times for her. As I mentioned, Linda’s grandmother was very ill as well and was dying. Not only was Linda taking care of me, she was also her grandmother’s part-time caregiver. She would tend to her at lunchtime and on the way home from work, only to have me to also have to deal with. All of this while she was working a full-time job.

So with all of this, and my recovery going well the week following my surgery, it was expected that I would be going home for Thanksgiving. Having just received the miracle of life, and feeling very thankful to still be alive, I asked Linda if we could have Thanksgiving dinner at home with some of the family. Hindsight says that I was being very selfish asking her to do all of this work at the last minute, but hey, I was thankful! Linda did what she always does – pulled off yet another extraordinary event. It meant a lot to me to be home and alive on Thanksgiving Day that year.

I was sent home with a drugstore full of prescriptions:

* Prograf. This medication lowers the body's immune system. The immune system helps the body fight infections. The immune system can also fight or reject a transplanted organ. This is because the immune system treats the new organ as an invader. Prograf increases the chances of developing skin cancer and diabetes, as well as lowering the blood cells that help the body fight infections. This can make it easier to bleed from an injury or get sick from being around others who are ill. For the rest of my life I will need to avoid excessive exposure to direct sunlight and avoid being around those who are sick. Even a common cold can be life-threatening if it were to progress to pneumonia.
* Prednisone. Prednisone is in a class of drugs called steroids. It prevents the release of substances in the body that cause inflammation. It too, weakens the immune system. Initially it had caused me to experience tremors, but I was weaned off of it after about 2 months
* Pepcid. This was prescribed to combat the acidic effects of all of the other medications in my stomach.
* Cellcept. This is taken along with Prograf to help with anti-rejection.
* Bactrim. This treats different types of infection caused by bacteria in the stomach from the medications.
* Nystatin. This medicine is used to treat fungus infections in the mouth (also known as thrush) that is caused by taking some of the other medications. It is a mouthwash.
* Norco. This was prescribed for pain. I only took a couple of them for the first few days.
* Lasix. I continued to take this diuretic for a couple of months or so following surgery.


Prior to my surgery I had never been to the Veterans Administration for any health care whatsoever. I had gotten all of my prescriptions filled at Rush before leaving and I remember that my co-pay was $75.00. I decided that I did not want to have to do that every month, so I contacted the VA at Hines to set up an appointment. I was assigned a primary care doctor and a liver specialist. I explained to them that all of my care would be handled at Rush, but would like the VA to fill the prescriptions that the doctors at Rush wrote for me. They told me that I would need to see the liver specialist at Hines every 3 months and that they would then cover the entire cost of my medications. Sounded like a good deal to me. I eventually got the 3 months stretched to 6 months and I now I only need to go in once a year. I phone in my meds every month and they get delivered via mail at no charge.

About two months after my surgery, I received the bill from the hospital and doctors. It came to almost $300,000. Being the detective that I am, I decided to take a trip to the Medical Records section of the hospital just to see what all that money went for. In so doing, I found the surgeon’s report. As it turns out, my gall bladder was removed during the procedure. I guess it must have gotten in the way. I found out later that it is standard procedure to remove the gall bladder during a liver transplant.

I see my hepatologist at Rush every six months and get my blood tested every three months. I go in for a liver biopsy once a year just prior to my annual visit with my surgeon, Dr. Dodson.

Allow me to explain a little bit about the liver biopsy. For three years following my transplant, my hepatologist suggested (threatened) that one day I would need a liver biopsy. The thought of that was never very appealing to me. Since liver biopsies are invasive and they do have some risks, such as internal bleeding, infection, and mild to moderate pain, my goal was to put this off as long as I could.

Then one day, my luck ran out. My hepatologist at the time, Dr. Stanley Martin Cohen, informed me that he would like to have this test run on me. He said it was precautionary to make sure there were no underlying problems that wouldn’t show up on the routine blood tests. Simply stated, a liver biopsy is a procedure for the diagnosis of abnormal liver conditions.

So I made the appointment with the hospital for this out-patient procedure. I was told to schedule the whole day and to bring a driver. No food or drink after midnight. I was very apprehensive about this, as most people tend to be. The care I receive at Rush is first-class and my entire post-transplant team has kept me very much alive these last few years. I was getting used to that and I respect their track record, so what could I do? Time to suck it up.

The procedure began by inserting an IV into the back of my hand. I, of course, tried to persuade the nurse against this, but my doctor explained that in the unlikely event that if some internal bleeding were to occur during the test, they did not want to be searching for a vein later to insert an IV in order to treat the bleeding. Then a topical numbing shot was given to an area on my right side between two ribs. This area was identified by Dr. Cohen and verified via ultrasound as being the most advantageous to enter. A couple more needles were inserted to inject local anesthesia inside of me. Then a gun-type needle was inserted and shot into my liver. This retrieved a core of tan-red tissue measuring 2.0 cm in length. I then had to lie on my right side for an hour and then on my back for two more hours. My rib cage felt like someone whacked me with a baseball bat, but a couple of Tylenols relieved the pain. I was then released and took Linda to Chinatown for a late lunch. Piece of cake.

I’m not the kind of guy that wants to know too much about these things until it’s over, when I no longer have the opportunity to chicken out. It wasn’t until the day after the procedure that I did some research. It turns out that biopsies are important for several reasons. First it helps your medical team determine exactly where you and your liver are in the course of the disease process (grade and stage). It is used to decide what type, if any, therapies are appropriate. The three main things that are looked for are inflammation, fibrosis, and cirrhosis. The biopsy may also reveal other histological and pathological findings, such as the presence of lymphoid nodules, damage to the small bile ducts, and/or the presence of fat.

If there is fibrosis present, the levels of staging, which range from stage 0 (normal), to stage 4 (cirrhosis), can be detected. Stage 1 is mild fibrosis, stage 2 is moderate fibrosis, and stage 3 is severe or bridging fibrosis. Once a patient has stage 3 or stage 4, the risk of liver cancer and liver failure are increased. Stages 3 and 4 fibrosis are life threatening, while stages 0, 1, and 2 are not.

While there are alternative tests available, such as Fibroscan and HCV Fibrosure, they are not substitutes. Liver biopsies have been performed for many, many years and are still considered the “golden standard of liver tests”. However, more research is being given to other non-invasive methods. The market timing for the non-invasive tests is good, considering that doctors are increasingly open to alternatives to biopsy. Acceptance will be easier to come by providing research bears out manufacturers’ claims that they are at least as accurate as the biopsy.

I should point out that liver transplantation does not cure HCV. The majority of people with hepatitis C who receive liver transplants experience a recurrence of the virus. Those with HCV who receive liver transplants also are at accelerated risk of developing cirrhosis within five years.

Based on the test results from my biopsy and also from the RNA blood test, my doctor felt that it might be worth my while to consider a treatment program. Before I get into that, allow me to explain genotypes. Genotype refers to the genetic make-up of an organism or a virus. There are at least six distinct HCV genotypes identified, with several sub-types. The most common type/sub-type in North America is type 1a, which is what I have. Unfortunately, this is the least responsive type to treatment.

The treatment itself consists of weekly injections of a drug called peginterferon alfa-2a (Pegasys) combined with twice-daily oral doses of ribavirin (Rebetol) — a broad-spectrum antiviral agent. The recommended course of this treatment is for a 48-week period.

The ultimate goal of HCV treatment is to clear the virus from the bloodstream. Combined pegylated interferon and ribavirin clear HCV infection in 40 percent to 80 percent of those treated. Its success often depends on the type of infection. For example, this treatment clears infection in up to half the people with genotype 1 — the most common genotype found in the United States — and in up to 80 percent of those with genotypes 2 and 3.

Unfortunately, there is not much research available for post-transplant treatment as far as clearing the HCV virus. Most treatment programs are administered to help clear the virus and thus avoiding the need for a transplant. My doctor felt that after reviewing my biopsy results that it would be worth a shot to begin the treatment, if for no other reason than to hold the virus at bay. Linda and I discussed the pros and cons of this treatment. It would involve weekly interferon injections and twice-a-day Ribavirin tablets. The side-effects were a serious consideration. More than half of the patients that begin treatment drop out by the fourth week.

One of the more common side effects of pegylated interferon include: a decrease in white blood cells and platelets, anemia, nausea, diarrhea, fever, chills, muscle and joint pain, difficulty in concentrating, thyroid dysfunction, hair loss, sleeplessness, irritability, mild to serious depression, erectile dysfunction, and rarely, suicidal thoughts. Other serious adverse events include bone marrow toxicity, cardiovascular disorders, hypersensitivity, endocrine disorders, pulmonary disorders, colitis, pancreatitis, and ophthalmologic disorders (eye and vision problems).

Pegylated interferon may also cause or make worse fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. My doctor would monitor me closely with periodic clinical and laboratory tests.

Side effects of Ribavirin include nausea and anemia.

Cost was not a factor since the VA was now paying for all of my medications. I had read stories of people who began the treatment and had to drop out because of the serious side-effects, but we decided that I should at least give it a try if there was any chance at all of helping me. After all, I was given a miracle and I needed to do whatever I could to preserve that.

I began the treatment in January of 2007. It did not take long before I began feeling the results of the medications. Both my white and red blood counts dropped drastically putting me into the anemic stage. The doctor prescribed Neupogen to bring the white blood cell count up and Procrit for the red blood count. I was now self-injecting 3 shots into my abdomen weekly and feeling weak and generally lousy. I stuck it out for as long as I could and the doctor recommended that I discontinue the Ribavirin and decrease my interferon to ? dosage. This would put me into a “maintenance” mode. It would not ever be able to clear the virus, but hopefully keep it from getting any worse. We are basically stalling for time until one or more of the trials for new drugs advance to where they will become available. I am currently on the ? dosage of interferon and will continue on indefinitely.

Living with Hepatitis C
HCV is not a death sentence. It is a life-adjustment. If I concentrate on reducing stress, remain cognizant of what I breathe, keep my hands clean, avoid germs as much as possible, and keep busy, I will survive. I have good days and I have bad days. I look at every tomorrow as if it’s going to be a good day.

I am going wherever my hepatitis journey takes me. Having hepatitis has taught me many valuable lessons and has opened many doors for me. It is a journey that I participate in and make choices about. I try to enjoy every day of my journey. I focus on all of the wonderful opportunities I have instead of viewing the disease as a detriment. I choose to make this as positive an experience as it can be.

I have bad days – this disease is very powerful and has side-effects that come and go. Some days I just am not up to participate in some activities. Some days are just harder to get through than others.

What does my future hold? Nobody knows, but I have a great support system at home and I have many interests that keep me busy. If I keep taking my meds and try to live right, who knows how long I will be around?

There are some very special people that were involved one way or another with the success of my recovery process:

Charlotte, my Social Worker – who believed in me

Carlos – who inspired me and gave me hope

Chris and Brian – who gave me the love and determination to survive

My family – for all of their love and support (and jello and chocolate)

Reverend John and Donna Steer – whose prayers and support helped to get me through

Drs. Jensen and Cohen – my hepatologists who kept me alive

Dr. Dodson – my transplant surgeon who mentored from the best – Dr. Thomas Starzl

The entire, incredibly dedicated, nursing staff at Rush

Georgine – whose bravery, strength, and determination I relied on

Linda – who kept me alive with her unconditional love, devotion, and support. She was, and will always be, my guardian angel.