About twenty two years ago when I was thirty I went to get a physical because it seemed like the responsible thing to do. I was feeling great and running several miles a day. After the physical was completed my doctor said that I had elevated liver enzymes and ordered a liver biopsy. It came back showing I had some slight liver damage and I was informed I was at stage 1 of Hepatitis C, my doctor suggested to start a treatment called Interferon therapy. I was told that I would have flu-like symptoms but I should still be able to go to work. I agreed to take 3 million units 3 times a week for six months. I thought it was just a small virus. I didn't realize my life was about to change... forever.
To learn more about Interferon check this site out.
www.hepatitis-central.com/mt/archives/2006/07/understanding_h.html
Before and After
Night riding in North Ga. Mountains
Two years before transplant
Two years before transplant
Ride to Deal's Gap
One year before transplant
One year before transplant
Bad day at the beach
Nine months before transplant
Nine months before transplant
They called me Old Yeller
Six months before transplant
Six months before transplant
Swollen Belly
Drainage Tube
Third day after transplant
Third day after transplant
T-Tube
The Incision
Three weeks after transplant
My wife and I
Four months after transplant
Four months after transplant
Conclusion
I'm not sure why I had to go through all I did but my life has changed. Before the world revolved around me and now I try to revolve around it. Life is short and I really didn't understand how short and how fragile life is. Today, when I wake up it is with a smile. I ask God what do you have in store for me today? The answer comes back; do something good today, try to help someone out, and share with others what you have learned. No I'm not a saint but my view of what life means has really changed. It's not how much money I accumulate, how big my house is, or even how well I am liked by other people. It's about helping other people even if it just saying something nice about someone. If God wishes me to have money, big houses, or live in poverty it's just fine with me. I'm just grateful to be alive because staring death in the face is no way to live. I have learned to appreciate my family and friends. The blinders have been taken off and there is a big world out there to enjoy. I know there will still be hard times in my life, I just hope I can learn to accept it is just part of the journey of living.
My next blog will be lessons learned that hopefully will help people getting ready to have a transplant how to plan for it. A liver transplant cost an average of $498,000, a number not to take likely!. But there are ways to get through it thanks to health, life, and disability insurance along with charitable organizations. However, understanding how they all work together is difficult road to navigate through. The less you have to worry about money the more you can focus on staying alive and getting healthy.
My next blog will be lessons learned that hopefully will help people getting ready to have a transplant how to plan for it. A liver transplant cost an average of $498,000, a number not to take likely!. But there are ways to get through it thanks to health, life, and disability insurance along with charitable organizations. However, understanding how they all work together is difficult road to navigate through. The less you have to worry about money the more you can focus on staying alive and getting healthy.
Waking Up is Hard To Do
As I opened my eyes I heard Mr. Jones are you with us? The nurse said you are in post-op and the transplant went very well. I couldn't talk and all I wanted to do is go back to sleep. They kept on talking to me asking me to move my fingers and toes, lift my arms and move my legs, and blink once for yes and twice for no. After they were happy with everything they moved me to SICU. When I got there more questions were asked. I wanted to talk but couldn't speak. Then they told me I had a tube in my neck to give me medicines, a respirator in my throat, a nasogastric tube in my nose, three draining tubes coming from my abdomen, a tube that was sticking in my liver, and a catheter. I felt like a voodoo doll. They said in the next few days they would start removing them. Then my wife came in and said I made it and I was starting to pink up already; all I could do was squeeze her hand. My parents came in and my Mom was smiling and my Dad had a tear in his eye. All I could think about was how hungry I was and wanted a big steak. I was trying to speak to ask for something to eat but just couldn't get it out. Then the next thing I remember is the pain started. I managed to peek at my stomach and then wish I hadn't. Next my Daughter and Son came in to visit and my daughter started crying while my son was consoling her. After their visit the nurse said just three more visitors and that would be all. I think it was my brother and parents in law.
The nurse told me what was going to happen the next day and told me I needed to get some rest. She said she would be watching me on her monitor at the nurses station. She said she would give me enough pain medicine to help me sleep all night. She pushed a button and I was gone.
The next morning I felt great except for the pain. The surgeon was there and said I looked like a different person already. I whispered how bad was my liver and he said I didn't have much time left and that my portal vain was completely blocked. He said I was a lucky man. I stayed at UAB for a whole month with my wife and mom and left home like I was twenty years younger. On the way home I went back to visit my friends at work and the expressions on everyone said it all. Some of the new employees didn't even recognize me. After I left that visit, I was overcome by emotion and thanked God for my new lease on life. It's been six months since the transplant and I feel alive and getting stronger every day. I was really a sick man and I'm grateful to be back to my old self. I guess God wasn't ready for me yet. ;-)
The nurse told me what was going to happen the next day and told me I needed to get some rest. She said she would be watching me on her monitor at the nurses station. She said she would give me enough pain medicine to help me sleep all night. She pushed a button and I was gone.
The next morning I felt great except for the pain. The surgeon was there and said I looked like a different person already. I whispered how bad was my liver and he said I didn't have much time left and that my portal vain was completely blocked. He said I was a lucky man. I stayed at UAB for a whole month with my wife and mom and left home like I was twenty years younger. On the way home I went back to visit my friends at work and the expressions on everyone said it all. Some of the new employees didn't even recognize me. After I left that visit, I was overcome by emotion and thanked God for my new lease on life. It's been six months since the transplant and I feel alive and getting stronger every day. I was really a sick man and I'm grateful to be back to my old self. I guess God wasn't ready for me yet. ;-)
The Moment of Truth
After I got through registration things moved quickly. I was put in a room and asked to put on a gown and then they put in the IV. After about an hour I was moved to pre-op (pre-operations) when they started prepping me for surgery. One by one my family started arriving. They would only let a few in at a time. After an emotional two hours the nurse came in and asked everyone to leave because they would be taking me to surgery shortly. It was deathly quite except for all the bells and buzzers from the equipment. Then the nurse came in and said that the doctor was scrubbing up and I would be on my way in about twenty minuets. She asked how I was doing and I told her I was nerves. She said the surgeon was one of the best in the country and I couldn't be in better hands. She said I'm going to give you some medicine to relax you and then we will be ready. The nurse said the operating room is about ten minutes away and I would be very relaxed when I got there. She stopped at the operating room door and informed me when you go in the operation room there would be twelve people in the room and lots of equipment. She pushed a button on the wall and announced Mr. Jones is ready. When I was rolled into the operating room I remember thinking what a high-tech surgery room. All I remember is being moved to the operation table and then someone said Mr. Jones the Doctors are ready. Do you have any questions? I said not really. A nurse said when you wake up you will be in post-op (post operation) and then when you will be moved to SICU (surgical intensive care unit). She said I would have a lot of equipment hooked up to me and my hands would be restrained so you want try to pull out any of the tubes. Then the surgeon came in and said Mr. Jones if you are ready he was ready to began. I nodded yes and then I saw them giving me some medicine in my IV and that was the last I remember.
Waiting is the Hardest Part
I was approved by UNOS and I was on the transplant list. This is good news, however they need a donor. It had been a couple of months since I went on medical leave and really couldn't do much of anything. The financial situation was getting desperate because of a six month waiting period form Social Security Disability (SSDI) and my disability policy from the hospital. It was hard for me to keep the ship floating, eventfully I turned all the financial decisions over to my wife. She did a great job! Each week was getting worse for me and towards the end I had entered into the survival mode. I was so sick to the point I really thought I was going to die. I didn't let anyone know how bad it was. I don't think I was fooling anyone. I had called UAB several times and asked them where I was on the transplant list. It would go from next in line to fifth in line in just three days. My nurse explained to me the liver list changes constantly and I was just making it hard on myself. She said that when they had a donor I would be the first to know. Each day I was becoming more desperate because I knew at my core I could die soon.
One evening I had the worst night of my life and I never want to go through it again. I was throwing up my guts , I was hearing things that weren't there, I was confused, and I felt like I was on deaths door. It was bad! I said a prayer like this "God if you want me take me now because I can't live like this any longer". In just six months I had lost my since of well-being to the point where I would rather die then live. I was afraid because I knew it could get much worse. It was the first time in over twenty seven years I can remember shedding a tear about my illness. I fell asleep after about three hours of pure hell. I was woken by my cell phone at 3:07 in the morning on August 5th 2008. I answered and a woman's voice said is this Mr. Jones, I said yes, she said this is UAB calling and we have a liver for you, can you be here in four hours? I asked if this for real, and she said yes. I said I'm on my way. I only had to wait 3 months for a liver, I was lucky.
One evening I had the worst night of my life and I never want to go through it again. I was throwing up my guts , I was hearing things that weren't there, I was confused, and I felt like I was on deaths door. It was bad! I said a prayer like this "God if you want me take me now because I can't live like this any longer". In just six months I had lost my since of well-being to the point where I would rather die then live. I was afraid because I knew it could get much worse. It was the first time in over twenty seven years I can remember shedding a tear about my illness. I fell asleep after about three hours of pure hell. I was woken by my cell phone at 3:07 in the morning on August 5th 2008. I answered and a woman's voice said is this Mr. Jones, I said yes, she said this is UAB calling and we have a liver for you, can you be here in four hours? I asked if this for real, and she said yes. I said I'm on my way. I only had to wait 3 months for a liver, I was lucky.
Back to UAB
I remember the urgency in Dr. Patel's voice when he said we need to get you to UAB. He made the appointment, signed the disability papers, and check the box that said life expectancy 6-12 months. I knew I wasn't feeling great but I didn't feel like I was going to die in the next year. I could tell by how fast everyone was moving time was of the essence. The hospital I was working for did a great job on making sure the insurance policies I had were activated. It was vital to our finical well being.
At UAB I went through all the same testing as before, and a few new ones. When it was time to meet with the surgeon and hepatologist they had my CT on the computer screen. The surgeon showed us all of the different images and informed my wife and I that my portal vain had a 100% blockage, my liver was shrinking, my spleen was enlarged, and my brain was swollen. He was surprised I was doing as well as I was. He said my MELD score was holding steady at 18. My wife asked if I would be put on the transplant list and he said it's a very good chance I would but it's not official until UNOS agrees to it. I would receive a letter in the mail with the final decision. He said that my wife should be the contact person for me because I would not remember any instructions.
Well after about twenty six years of having Chronic Hepatitis C all of those saying like "it would be several years before I will start having serious problems" came true. For a brief moment it was like every office visit and procedure had played like a tape in my head. Then reality hit, I was going to die if I didn't get a transplant! If I did get a donor I was a high risk patient for surgery because I was also a diabetic. Then I realized the motor cycle wreck I had was because I had lost consciousness while I was on the road.
I finally accepted I was "a very sick man".
At UAB I went through all the same testing as before, and a few new ones. When it was time to meet with the surgeon and hepatologist they had my CT on the computer screen. The surgeon showed us all of the different images and informed my wife and I that my portal vain had a 100% blockage, my liver was shrinking, my spleen was enlarged, and my brain was swollen. He was surprised I was doing as well as I was. He said my MELD score was holding steady at 18. My wife asked if I would be put on the transplant list and he said it's a very good chance I would but it's not official until UNOS agrees to it. I would receive a letter in the mail with the final decision. He said that my wife should be the contact person for me because I would not remember any instructions.
Well after about twenty six years of having Chronic Hepatitis C all of those saying like "it would be several years before I will start having serious problems" came true. For a brief moment it was like every office visit and procedure had played like a tape in my head. Then reality hit, I was going to die if I didn't get a transplant! If I did get a donor I was a high risk patient for surgery because I was also a diabetic. Then I realized the motor cycle wreck I had was because I had lost consciousness while I was on the road.
I finally accepted I was "a very sick man".
My Last Day at Work
When I woke up I was struggling to dress myself but made a bad decision to go to work. For some reason I was really mad at something but I couldn't figure out why I was mad. My wife suspected that my ammonia levels where high because I couldn't stay awake in the car. I had to have lab work that morning and I couldn't find Dr. Patel's office. I got lost in the hospital which was strange because I knew the hospital like the back of my hand. I finally found Dr. Patel's office and the lady that does my labs took one look at me and knew I was not OK. Dr. Patel's nurse is an expert of knowing when I am confused and she is so discreet about it. She instructed to draw blood to do another ammonia test then called my wife who works at hospital. I barely made it to my office. When my staff saw me you could of heard a pin drop, they where stunned! I announced I wasn't feeling good that morning. I went into my office and then after about a half hour it happened. The transition from being somewhat coherent to being non-coherent is a strange transition. I remember talking to people that weren't there, I was having these moments of what I thought was clarity. I remember most of all how brilliant the colors looked. I was hallucinating. I remember how mad I was when some people brought me out of it. It was like the only peace I had in several years. I was somewhat back to the living and there was this lady at my office door saying, Clayton, we need to go home now. I knew I knew her but didn't realize she was my wife. I wasn't going to go anywhere and got fighting mad. I stumbled out of my office and I was going to protest to my boss about how all these strange people were trying to tell me what to do. I couldn't find my bosses office. The next thing I remember is waking up in my bed. I was so hoping it was a dream but I could tell by the look on my wife's face something bad happened. She said that it was time to go on disability, and I agreed without an argument. I knew it was over. My ammonia level was 160. It took a month to recover.
Problems at Work
I had been working at my new job for about five years now and the last nine months were extremely difficult for me. I couldn't hide the illness anymore, everyone knew I was really sick. I had lost around thirty pounds, I had a white/yellowish complexion, my balance was off, and I was struggling with my memory recall. My boss was under pressure from the other managers to ask me to go on medical leave. I must say that she supported me to the very end. She knew I was really sick but she was very compassionate to me, never a cross word. The bottom line was that everyone had lost confidence in my ability to perform my duties. I felt so isolated because I was never asked to go to lunch with the guys where I use to go everyday. It was like I just didn't exist. It was obvious that I made my co-workers feel uncomfortable being around me. There was one person in my area that didn't run from me when I approached her. Her sister had just won an awful fight with cancer and she supported me by just understanding what I was going through.
One morning I woke up to get ready to go to work and I was totally out of it. I couldn't dress myself, brush my teeth, shave, and belligerent to my family. I thought everyone was out to get to me. It is very hard to put it into words but the best thing I can relate it to are those dreams where everything is all messed up. In the dream you know it's not right but there is nothing you can do about it and it is very frustrating. You only know it's a dream when you wake up. I didn't wake up from my nightmare for a week. I was walking and trying to talk normal but I would do strange things like start a fire in the back yard. This was the first time my family knew at a gut level my sickness was for real. They were freaked out. My ammonia level had risen to over 120.
When I returned to work I got the cold shoulder from everyone except for my boss and a few of my biker buddies. Evidently while I was out for the week there was a big push for my boss to deal with me. She did but not how the other managers wanted it to be dealt with. Some people just wanted me gone. After a few weeks my ammonia levels starting dropping but never to a normal level. I was hanging on by a thread for the last six months.
One morning I woke up to get ready to go to work and I was totally out of it. I couldn't dress myself, brush my teeth, shave, and belligerent to my family. I thought everyone was out to get to me. It is very hard to put it into words but the best thing I can relate it to are those dreams where everything is all messed up. In the dream you know it's not right but there is nothing you can do about it and it is very frustrating. You only know it's a dream when you wake up. I didn't wake up from my nightmare for a week. I was walking and trying to talk normal but I would do strange things like start a fire in the back yard. This was the first time my family knew at a gut level my sickness was for real. They were freaked out. My ammonia level had risen to over 120.
When I returned to work I got the cold shoulder from everyone except for my boss and a few of my biker buddies. Evidently while I was out for the week there was a big push for my boss to deal with me. She did but not how the other managers wanted it to be dealt with. Some people just wanted me gone. After a few weeks my ammonia levels starting dropping but never to a normal level. I was hanging on by a thread for the last six months.
The Voice Mail
It has been a few days since I saw Dr. Patel and had not heard anything about the CT or lab work he ordered. I always listen to my voice mails first thing in the morning, before I took a lunch, and before I go home. When I got back from lunch that afternoon, there it was sitting on top of my desk, like it was the "king of the hill". The voice mail light on my phone was blinking as if it was telling me "you knew the doctor would be calling today". I don't know why but it seemed to saying "listen to my message if you dare". As I came out of my daze I pushed the blinking button, keyed in my password, and selected item number one. It went something like this. "Hi Mr. Jones, this is Dr. Patel's nurse and you need to go to the pharmacy and pick up a prescription I just called in. Also, Dr. Patel would like to see you first thing in the morning. If you could get here around 8:00 am that would be great. Have a nice day".
Latulose is a liquid sugar that taste so bad I had to rename it to gagulose. Three table spoon three times a day. The next morning when I asked the nurse what she was trying to do to me she just said pretty nasty stuff isn't it. I responded, that's an understatement. She tookt me in an examining room and after a while Dr. Patel came in smiling saying Mr. Jones how are you feeling today. I said kind of strange now that you mention it. He said my ammonia level was elevated to 98 and it should be 29-40. That is why you are tired, confused, and forgetful. We need to get it down quickly, that is why I prescribed the latulose to help with the constipation. You have to have three bowel movements a day. Not one, not two, but three a day. The only way you can remove the ammonia in your blood stream is by bowel movements. He said my CT showed that my liver was shrinking and my spleen was enlarged. You also have portal hypertension and mild encephalopathy. That's what I like about Dr. Patel; straight to the point . He explained that encephalopathy is when too much ammonia is in your blood stream and it has a physiological effect on your brain because the ammonia causes it to swell. He said take the latulose and take a week off work. Your meld score is 14. I want to see you in two weeks.
Link for information on encephalopathy from cirrhosis
http://www.webmd.com/hw-popup/encephalopathy-from-cirrhosis
Latulose is a liquid sugar that taste so bad I had to rename it to gagulose. Three table spoon three times a day. The next morning when I asked the nurse what she was trying to do to me she just said pretty nasty stuff isn't it. I responded, that's an understatement. She tookt me in an examining room and after a while Dr. Patel came in smiling saying Mr. Jones how are you feeling today. I said kind of strange now that you mention it. He said my ammonia level was elevated to 98 and it should be 29-40. That is why you are tired, confused, and forgetful. We need to get it down quickly, that is why I prescribed the latulose to help with the constipation. You have to have three bowel movements a day. Not one, not two, but three a day. The only way you can remove the ammonia in your blood stream is by bowel movements. He said my CT showed that my liver was shrinking and my spleen was enlarged. You also have portal hypertension and mild encephalopathy. That's what I like about Dr. Patel; straight to the point . He explained that encephalopathy is when too much ammonia is in your blood stream and it has a physiological effect on your brain because the ammonia causes it to swell. He said take the latulose and take a week off work. Your meld score is 14. I want to see you in two weeks.
Link for information on encephalopathy from cirrhosis
http://www.webmd.com/hw-popup/encephalopathy-from-cirrhosis
Just a Standard Office Visit
I knew the drill well. Sign in at the front desk, sit down in the lobby, get weighed, take the vitals, answer the nurse's questions, look at all the things on the wall about the liver, and wait for the Doctor to see me. Dr. Patel always enters the room with a smile. By now I know he is looking for things that only a doctor would look for. Then after a quick glance he would ask the questions. He asked me how I was feeling and I gave the standard answer just fatigued. He looked at my eyes and then asked any other problems. I told him I was having a hard time staying awake and as soon as I got home I just wanted to go to sleep. I also told him when I was driving I was drifting off. He asked how I felt about filing disability and I responded sharply, no way, I'm not ready to quit work. Then he asked in a calm manner if there was anything else going on. I said the other day when I got off work I couldn't find my car and I had walked the parking deck three times and still couldn't find it. When I did find my car I had passed it several times. Another time he asked, anything else. I told him now that he mentioned it everyone at worked seemed to be avoiding me and leaving me out of meeting that I usually attended. They seemed frustrated with me and I wasn't sure what I had done for them to feel that way. Then he asked, how many bowel movements I was having a day. I remember thinking why in the world would he asked that questions; I answered two or three a week. He pressed on my abdomen and asked if there was any pain. I responded it's really tender around my rib cage. He did the liver tap and said he was going to order a CT and prescribe Provigil to help with the fatigue. He made an appointment to see him the next week. As I left the office I suspected something was wrong.
link for Provigil
http://www.provigil.com/pat200_what_is_provigil.aspx
link for Provigil
http://www.provigil.com/pat200_what_is_provigil.aspx
The Dragon
I was excited, I was up early, my motor cycle was running great, and a few of us were off to Deil's Gap North Caroline, home of the famous "Tale of the Dragon". Bikers come from all over the world to ride the dragon and to think it's practically in my back yard. We met for breakfast at 8:00 then off we went. We had a great time and got home around 6:30 that evening. I noticed that my leg was stiff and sore but that wasn't uncommon after a full day on a motor cycle. I cleaned my bike and my wife had a great supper for me. Her chile tasted really good and it was satisfying to have a full stomach. After I ate she noticed I was limping and we were surprised to see my whole leg was swollen. We called Dr. Patel's nurse in the morning and told her about my leg and she said come to the office first thing that morning. Dr. Patel sent me to get a Doppler Ultra Sound and they found a DVT (deep vain thromboses) a blood clot. Well, I received my go directly to the hospital pass which was covenant since the Galen Group practice was on the hospital campus. I felt I could walk fine but I had to be pushed in the wheel chair all the way to my hospital room. What was the big deal anyway?
Well it turned out the big deal was if the clot broke loose it was very likely I could have serious problems or die. That night in the hospital I started to feel really bad and my stomach was really hurting me. My eyes went in the back of my head and all the people were saying things like Mr. Jones are you with us? I could hear them but I couldn't respond. Then someone hit me HARD on my chest and I came to but was sick as a dog. The next morning Dr. Patel came by and told me what happen. My blood pressure dropped so low my body had to redirect the blood flow to vital organs thus depriving some other organs of blood . He was joking around like it wasn't a big deal but I could tell he was concerned about something.
I had to park the bike for several months.
Link to details on a DVT
http://www.nlm.nih.gov/medlineplus/ency/article/000156.htm#top
Well it turned out the big deal was if the clot broke loose it was very likely I could have serious problems or die. That night in the hospital I started to feel really bad and my stomach was really hurting me. My eyes went in the back of my head and all the people were saying things like Mr. Jones are you with us? I could hear them but I couldn't respond. Then someone hit me HARD on my chest and I came to but was sick as a dog. The next morning Dr. Patel came by and told me what happen. My blood pressure dropped so low my body had to redirect the blood flow to vital organs thus depriving some other organs of blood . He was joking around like it wasn't a big deal but I could tell he was concerned about something.
I had to park the bike for several months.
Link to details on a DVT
http://www.nlm.nih.gov/medlineplus/ency/article/000156.htm#top
Are You OK?
As I was dressing for work one day and I noticed my cloths were looser then usual. That was OK with me because I needed to drop a couple of pounds. I was feeling great and my mind was sharp. When I got to work I noticed that a few people said I looked tired. I didn't think much about it because I had been putting in lots of hours. That day I was walking to my boss's office and I had the strangest sensation. I felt like I was getting smaller and things were spinning around but it quickly went away. I just got something to eat and then I felt fine. It still seemed like lots of people were asking me if I was OK. Later, I was on the elevator going to a meeting and that same sensation came over me, but it lasted longer then the one before. After the meeting I sat down in a lobby chair and started feeling the energy just leave my body. I put my head down in my arms and went to sleep or something because the next thing I remember is a person saying are you OK. I said, I was a diabetic and just needed to get something to eat. She said you don't look very good. I assured her I was fine and when I stood up I immediately had to sit back down. The next thing I knew I was being taken to the emergency room by a few of my co-workers.
My blood pressure was very high and I developed some pain on my left side. My temperature shot up and they took a quick X-ray of my chest. It was pneumonia and I stayed in the hospital for three days before being released. I didn't think much about it; I just let myself ware down. Every since then people at work started treating me differently. They knew I was "a very sick man". Funny, I didn't feel sick, I just needed some rest.
My blood pressure was very high and I developed some pain on my left side. My temperature shot up and they took a quick X-ray of my chest. It was pneumonia and I stayed in the hospital for three days before being released. I didn't think much about it; I just let myself ware down. Every since then people at work started treating me differently. They knew I was "a very sick man". Funny, I didn't feel sick, I just needed some rest.
The Three Hour Tour
I had been at my new job for about three years while seeing Dr. Patel once a month. Things were settling out and outside of an occasional trip to the emergency room to deal with a sharp pain in my side, things were good. I decided it was time for me to have some fun so I did what any guy would do - I bought a motorcycle. It was great, I felt free, it made me forget that I was sick and I even made some motorcycle buddies. I rode it every chance I could get, I loved the long trips.
One day I was with my good friend and we were just going to take a three hour tour. Half way into the trip I started to feel a little strange but I just thought I needed something to eat because my blood sugar was probably low. I was going around a small easy curve and the next thing I knew I was on the ground. I didn't know what had happened because there were no other cars around, no gravel, and no oily road; just me and my buddy. He was in front but he saw me go down in his mirror and came back to help me out. He said, "What the hell happened"! I really didn't know, all I knew was I must of lost concentration. We managed to get my safety jacket off and my buddy's face said it all. We need to get you to the hospital...now! I looked at my shoulder and it was the size of a softball. So I hopped on the back of his bike and he took me to the hospital. I had shattered my shoulder.
I still couldn't figure out what happen, little did I know it was related to my cirrhosis, it would be a couple of more years before I knew about the mysterious fall. It took three surgeries to fix my shoulder. After awhile I started riding again.
Jim - My motor cycle buddy blog
http://pegscrapers.blogspot.com/
One day I was with my good friend and we were just going to take a three hour tour. Half way into the trip I started to feel a little strange but I just thought I needed something to eat because my blood sugar was probably low. I was going around a small easy curve and the next thing I knew I was on the ground. I didn't know what had happened because there were no other cars around, no gravel, and no oily road; just me and my buddy. He was in front but he saw me go down in his mirror and came back to help me out. He said, "What the hell happened"! I really didn't know, all I knew was I must of lost concentration. We managed to get my safety jacket off and my buddy's face said it all. We need to get you to the hospital...now! I looked at my shoulder and it was the size of a softball. So I hopped on the back of his bike and he took me to the hospital. I had shattered my shoulder.
I still couldn't figure out what happen, little did I know it was related to my cirrhosis, it would be a couple of more years before I knew about the mysterious fall. It took three surgeries to fix my shoulder. After awhile I started riding again.
Jim - My motor cycle buddy blog
http://pegscrapers.blogspot.com/
The Meeting I'll Never Forget
O.K., I admit, I was a little nervous when Dr. Patel met with me, my wife, and my boss which I invited to the meeting. I was surprised because he seemed so young. I had sent him a list of questions that I wanted to talk about and I was impressed he actually was prepared to review them. He thumped my liver, looked into my eyes, and listened to my heart. He told me I was a sick man and things are going to start getting difficult for me. I asked how bad is it going to get, and his response was, "if he had a choice of having a heart attack, a stroke, or cirrhosis he would pick the heart attack first and the stroke second". That got my attention, and I could see the concern in my wife's face. The next thing I asked was how long would it be before I started experiencing symptoms? He said everyone was different and he hesitated to make any prediction because it would all be speculation. He told me that there was a treatment I haven't tried called Infergen taken with Riboflavin. He said it was my decision and he understood if I decided not to take it considering all of the other treatments I had already gone through with no long term results.
After thinking about it, I decided to try it again but after three months of treatment it was the same old story, my performance at worked suffered, I was really sick, and I felt so bad at times I just wish I would die. But just when I was ready to give up my fighting spirit would always kick in. After a few months Dr. Patel discontinued the treatments because it was just too much for my body. I was elated when he said no more treatments. That was the last of the treatments as of this posting. I didn't realize that was actually bad news because every treatment that could be done had been done. I was running out of time and didn't even know it.
Link to Doctor Patel - he was instrumental in saving my life.
http://www.galenmedical.com/www/docs/207
After thinking about it, I decided to try it again but after three months of treatment it was the same old story, my performance at worked suffered, I was really sick, and I felt so bad at times I just wish I would die. But just when I was ready to give up my fighting spirit would always kick in. After a few months Dr. Patel discontinued the treatments because it was just too much for my body. I was elated when he said no more treatments. That was the last of the treatments as of this posting. I didn't realize that was actually bad news because every treatment that could be done had been done. I was running out of time and didn't even know it.
Link to Doctor Patel - he was instrumental in saving my life.
http://www.galenmedical.com/www/docs/207
My Third Doctor
I figured out that I had had HEP C for around twenty years. I did feel tired but that was all. As long as I wasn't taking Interferon, I was doing O.K. I really liked my new job and hit the ground running. I had been seeing Dr. Yates for over a year and he was monitoring me very closely. My MELD score was staying steady at 9-11. Not bad considering it had been about four years since I had been to UAB. One day I had a voice message saying it was important I see Dr. Yates as soon as I could. I think it was the next day I saw Dr. Yates and he informed me that my MELD score had shot up to 18 so he wanted to do a new liver biopsy to see what was going on. I was getting good at the liver biopsy's, after all this would be my third one. The procedure was improved to reduce the discomfort by sedating you with the twilight drug. You're awake, you feel the pain, but then you forget the pain. Wonderful stuff. However this time was different, instead of taking one plug they took four.
The results were my hepatitis had turned into cirrhosis. After a few weeks my MELD score dropped back down to 9. I didn't really understand the seriousness of it at the time. Dr. Yates said he spoke to Dr. Patel (a hepatologist) about me and Dr. Patel would be seeing me for now on.
I liked Dr. Yates - he is a really good doctor.
Here is his Link.
http://www.galenmedical.com/www/docs/158.1446/dr-munford-yates.html
The results were my hepatitis had turned into cirrhosis. After a few weeks my MELD score dropped back down to 9. I didn't really understand the seriousness of it at the time. Dr. Yates said he spoke to Dr. Patel (a hepatologist) about me and Dr. Patel would be seeing me for now on.
I liked Dr. Yates - he is a really good doctor.
Here is his Link.
http://www.galenmedical.com/www/docs/158.1446/dr-munford-yates.html
The Geographical Cure
After fourteen months of being unemployed I was hired at a hospital to head up one of their IT departments. I had to relocate to North West Georgia. It had been a total of eleven years since I first found out I had HEP C. I hadn't had any treatments for the last several months and was starting to feel better. When I was getting a routine physical for new employees the nurse at the clinic seemed to be concerned about the testing. I hadn't told them anything about the HEP C so I thought they were catching on because the nurse kept redoing test. She was talking to the doctor on the phone and she sounded very concerned. I knew I was busted when the clinic doctor rushed in to see me. He asked me how I felt, if I was thirsty, and how often I had to go to the restroom. I told him I was dying of thirst, I was very tired, and I had to go to the restroom about every twenty minutes. He told me my blood sugar was 790 which was extremely high and he was sending me straight to the emergency room. He looked into my eyes and started pushing on my abdomen then started thumping my liver. Nothing was said but I knew he knew that I had liver problems. He got the emergency room doctor on the phone and told him I was on my way and to take me in as soon as I got there.
The emergency room was only a few blocks away and when I arrived they threw me on a gurney and wheeled me into a room. The doctor ordered blood work and a CT scan. When he came back he told me I had a few problems, but first they had to bring my blood sugar down to below 200. He said I was a sick man and I had adult onset type 2 diabetes. The average blood sugar should be around 110. Then he said he was also concerned because my blood work and the CT scan were showing I might also have some liver problems. It was time to come clean, and then I gave him the scoop. After I begged him to sign the release to allow me to work he agreed only if I got a doctor to treat my diabetes and to help manage my HEP C. He signed the release! Meanwhile my previous doctor had transferred all my records to a medical group called "The Galen Group" where it was arranged for me to see one of their doctors.
The emergency room was only a few blocks away and when I arrived they threw me on a gurney and wheeled me into a room. The doctor ordered blood work and a CT scan. When he came back he told me I had a few problems, but first they had to bring my blood sugar down to below 200. He said I was a sick man and I had adult onset type 2 diabetes. The average blood sugar should be around 110. Then he said he was also concerned because my blood work and the CT scan were showing I might also have some liver problems. It was time to come clean, and then I gave him the scoop. After I begged him to sign the release to allow me to work he agreed only if I got a doctor to treat my diabetes and to help manage my HEP C. He signed the release! Meanwhile my previous doctor had transferred all my records to a medical group called "The Galen Group" where it was arranged for me to see one of their doctors.
The Liver Evaluation
There is an old saying that goes something like this "your first instructor will always be your favorite instructor". There are many hospitals that have excellent reputations for doing liver transplants but the University of Alabama (UAB) is the one for me. I was wondering why I had to stay for three days just to do a liver evaluation. After all what medical test could be done to me that hasn't already been done. Well to start with drawing so much blood out of me I thought I was going to faint, hart stress test, CT of my liver, deep vein oxygen test, psychiatric exam, and the list goes on and on. After they were done with me they knew absolutely everything physically and mentally about me. What impressed me was I never had to wait for an appointment and when I arrived at each department they all seemed like they had been waiting for me. For the first time in years I felt like a person and not an Interferon experiment. I had meetings with the hepatologist, the surgeon, my assigned nurse, and a few other people. After the results of the test were in I met with the surgeon he said that I was at in the begging stages of cirrhosis and I had portal hypertension. The hepatologist explained to me about the MELD score (Model for End Stage Liver Disease) and I was an 11. The MELD score is a formula that is used to determine how sick your liver is. A MELD score of 11 means I was sick but not sick enough to have a liver transplant. UNOS (United Network for Organ Sharing) doesn't even consider a person for a transplant until the MELD score is at least a 15 or16. When you are put on the liver transplant list, the MELD score usually has to be around a 20 before your near the top of the list for surgery. Of course there are always exceptions because each patient is different.
These are links about the MELD score and Portal Hypertension.
http://www.unos.org/news/newsDetail.asp?id=15
http://www.medicinenet.com/portal_hypertension/article.htm
These are links about the MELD score and Portal Hypertension.
http://www.unos.org/news/newsDetail.asp?id=15
http://www.medicinenet.com/portal_hypertension/article.htm
And the results are....
It had been three months after my third treatment and my enzymes were still elevated but not as bad as before. My doctor felt that if I could just continue the treatment for another nine months we just might beat this thing. What did I have to lose? I didn't have a job and I still felt bad from the last treatment. My family only saw me sick in bed and I was broke. I somehow still made it to church every week, and I got lots of support from my Sunday School class. After the third month of treatments my doctor discontinued the treatments because he didn't feel like my body could take any more. At this point in my life I really didn't care what they did to me. I was still in depression so they took me off the Prozac and put me on Wellbutrin which worked great. I had to take Procrit to help build red blood cells which helped me get stronger.
After a few months of recovery my doctor wanted to do a procedure that involved him looking in my throat for varicose veins. He said my throat looked good however there was nothing else he could do but to send me to a hospital for a liver evaluation. He sent me to University of Alabama (UAB).
And then the next journey began.
Definition of Varicose Veins
After a few months of recovery my doctor wanted to do a procedure that involved him looking in my throat for varicose veins. He said my throat looked good however there was nothing else he could do but to send me to a hospital for a liver evaluation. He sent me to University of Alabama (UAB).
And then the next journey began.
Definition of Varicose Veins
- Varices
- Esophageal and Gastric -- Submucosal varices of the lower esophagus or gastric fundus mucosa, frequently caused by the development of portal collateral vessels as a result of portal hypertension. Abnormally dilated/stretched veins. Dilated veins; these can rupture, leading to massive bleeding.
Things are Going to be Different
As I sat on the side of my bed getting ready to take my first shot of my third treatment I was thinking I had been into this thing for six years or so. I had about ten years to kick this virus. This time I'm in control, and I wasn't going to let this get virus get the better of me. My fighting gloves came off and I was ready to kick ass. It was going to be simple. All I had to do was exercise, drink lots of water, and stay away from salty foods. I told my boss that I was going to take another treatment and he was very supportive... for about four months. I thought I was doing great, but little did I know, the management team had other thoughts. One day my boss invited me to lunch and to my surprise the whole management staff was there. Then judging by the concerned looks on their face's, I realized I had been suckered into an intervention. They said they were all worried about me and I wasn't the person I was a year ago. The examples seemed to go on forever. With each example I lost more of my self-esteem. They said I looked like walking death, I was lethargic, I never smiled anymore, and I was extremely stressed. They suggested I get some help. When they finished, I felt embarrassed and ashamed. I let them down.
So I went to the doctor and informed him of what had happen and he prescribes Valium to calm my nerves. Big mistake - I never abused the Valium, but it did me. It pushed me over the edge. I lost all control. One day my wife had several calls from different people saying that they were very concerned about me because I was acting strange and very defensive. She confiscated the Valium and called my best friend for reinforcements then they called the doctor. It was bad, and eventually I was let go from my job of over ten years of service. But dammed the torpedoes, I was going to complete the treatments, and I did. Well things were different alright.... I had lost my job, I was sick as I could be, and I had been out of work for nine months. It was time to take action.
I must admit I was befuddled with what was going on? I couldn't understand, if I was that sick shouldn't there be pain or something?
Here are the symptoms of HEP C.
http://www.mayoclinic.com/health/hepatitis-c/DS00097/DSECTION=symptoms
So I went to the doctor and informed him of what had happen and he prescribes Valium to calm my nerves. Big mistake - I never abused the Valium, but it did me. It pushed me over the edge. I lost all control. One day my wife had several calls from different people saying that they were very concerned about me because I was acting strange and very defensive. She confiscated the Valium and called my best friend for reinforcements then they called the doctor. It was bad, and eventually I was let go from my job of over ten years of service. But dammed the torpedoes, I was going to complete the treatments, and I did. Well things were different alright.... I had lost my job, I was sick as I could be, and I had been out of work for nine months. It was time to take action.
I must admit I was befuddled with what was going on? I couldn't understand, if I was that sick shouldn't there be pain or something?
Here are the symptoms of HEP C.
http://www.mayoclinic.com/health/hepatitis-c/DS00097/DSECTION=symptoms
The Doc Wants to See Me.
I was at work doing my thing and just ran three miles at lunch. After my shower I went back to my office and had a message to call my doctor. I realized by now it's not a good sign when the doctor wants to see me. It was one of those sit down meetings so I knew it wasn't good. He informed me that my liver enzymes were the highest they had ever been and he wanted to order another liver biopsy. My first biopsy was the worst pain I had ever experienced so I wasn't to keen on having another one. The second one wasn't as bad as the first, but it still was painful. The results showed I was entering stage 2 of chronic HEP C. He wanted to start me on a new and improved treatment of Interferon taken with an antiviral medication call Riboflavin. The doctor said that it was a nine month treatment and suggested strongly I should try it. All those bad feelings from the first two treatments were coming out of hibernation and I got very angry. I had to make the go or no-go decision again. I talked with my family and we decided to try the new treatment. My family and I decided if I did it once I could do it again. That is what I wanted the world to see, but really inside, I felt guilty about the HEP C. My thoughts were if only this didn't happen to me and I must have done something bad to deserve this. I felt God was getting me back for something in my past. Then it hit me! I was right in the middle of the grieving process. I was grieving the loss of my health. I had to start fighting back because I didn't want to die and I just knew I could beat this.
This is a link that does a great job explaining the stages of the mourning process.
http://www.hopes-wi.org/SurvivorsGuide/mourning_process.htm
This is a link that does a great job explaining the stages of the mourning process.
http://www.hopes-wi.org/SurvivorsGuide/mourning_process.htm
The C Words
It was several months after my last treatment before I saw my new doctor. He reviewed my medical records and asked how I was doing. I reported that the treatments took a lot out of me and my drive was not as strong as it use to be. He spent time with me explaining what was in store for me. This is when I found out about the C words. The C words meant two things, cancer and cirrhosis. Either one of these can kill you. I had a high chance of developing one or both. He said my chances were at least 100 times more likely to develop cirrhosis or cancer of the liver than the average person. He also told me about the stages of hepatitis C and cirrhosis. I asked him if he thought I was going to die. He said if the treatments don't work or I didn't get a liver transplant I would die but it would be several years before there would be any problems. That was the second time I heard I had several years before I had problems. He ordered more tests and found out I had a blood type of Genotype 1A which was one reason why the treatments were not working as well for me. For the next couple of years all that was done was to keep an eye on the health of my liver. During this time I regained my strength and felt like the virus had gone.
Wrong again.
Check these sites out
HEP C and Liver Cancer
http://www.providence.org/oregon/health_resource_centers/cancer/faq.htm
Genotype
http://www.webmd.com/hepatitis/news/20040303/hepatitis-c-cure-rates-highest-ever
Wrong again.
Check these sites out
HEP C and Liver Cancer
http://www.providence.org/oregon/health_resource_centers/cancer/faq.htm
Genotype
http://www.webmd.com/hepatitis/news/20040303/hepatitis-c-cure-rates-highest-ever
The Second Six Months
It was a struggle to get out of bed. I felt bad, my attitude had taken a dive, and I just wanted to get this treatment over with. The second round of treatments was awful. I was anemic and just felt like crap all the time. It was taking a toll on my family, my work, and my social life was all but gone. I was a walking Zombie, but the doctor said my liver enzymes looked great. At that time I thought it couldn't get any worse. I decided I had to take it one day at a time and pray to get through it. I was hoping that the damage to my social life would be minimal.
It had been fourteen months since I started treatment and my blood work seemed to looked great, until the enzyme levels went up again. Somehow I wasn't surprised, I was just glad it was over; at least I gave it the best shot I could (no pun intended). I was finished with the second round of treatments and made a decision to just let the Hepatitis C (HEP C) take the course. After all what did the doctors know anyway? I was feeling great until I went to see them. Now I realized I was in the anger stage. After my round of treatment was over my doctor moved his practice out of state and referred me to another local doctor.
Check out this site for good information on Anemia.
http://www.hepfi.org/nnac/pdf/hepc_anemia.pdf
It had been fourteen months since I started treatment and my blood work seemed to looked great, until the enzyme levels went up again. Somehow I wasn't surprised, I was just glad it was over; at least I gave it the best shot I could (no pun intended). I was finished with the second round of treatments and made a decision to just let the Hepatitis C (HEP C) take the course. After all what did the doctors know anyway? I was feeling great until I went to see them. Now I realized I was in the anger stage. After my round of treatment was over my doctor moved his practice out of state and referred me to another local doctor.
Check out this site for good information on Anemia.
http://www.hepfi.org/nnac/pdf/hepc_anemia.pdf
The First Six Months
The treatment started out O.K. but I really got sick with my first shot, just like I had the flu. The symptoms only lasted for a couple of days then they started settling out. I decided if I took my shot on Monday, Wednesday, and Friday I would have the weekend to recover and then start all over again on the next week. Sunday was my best day. I worked the whole six months but I wasn't on all eight cylinders. The treatments seemed to be working because my blood work looked much better, so I just did the best I could but it was hard to continue at the end.
At last the six months was up; I completed the marathon. My viral load had dropped drastically and it looked like I made the 5%. I thought to myself that wasn't so hard after all. I had to do blood work every week after the treatments. Then one day after the lab work was completed my doctor asked if I could meet with him. He told me that my enzymes had shot up and they were even higher then before. So with some collective thinking with his colleagues the recommendation was to double the dose to six million units for another six months. I felt like someone just pulled the plug. I got very sad because I just didn't think it was possible to go through it again with a double dose; so they gave me Prozac to deal with the depression. I was never one to give up so I agreed to continue treatment. Deep down inside I was very concerned about work; I just knew I was going to get fired.
Check out this link for an explanation on viral load.
http://www.hepatitis-central.com/hcv/whatis/vl.html
At last the six months was up; I completed the marathon. My viral load had dropped drastically and it looked like I made the 5%. I thought to myself that wasn't so hard after all. I had to do blood work every week after the treatments. Then one day after the lab work was completed my doctor asked if I could meet with him. He told me that my enzymes had shot up and they were even higher then before. So with some collective thinking with his colleagues the recommendation was to double the dose to six million units for another six months. I felt like someone just pulled the plug. I got very sad because I just didn't think it was possible to go through it again with a double dose; so they gave me Prozac to deal with the depression. I was never one to give up so I agreed to continue treatment. Deep down inside I was very concerned about work; I just knew I was going to get fired.
Check out this link for an explanation on viral load.
http://www.hepatitis-central.com/hcv/whatis/vl.html
Starting Treatments
I knew I was in for some serious treatment when I had to go to class with a few other people where we were going to learn how to give ourselves shots, deal with the side effects, and what we could and couldn't eat. I noticed the other people in the class looked kind of sick and they weren't smiling. I thought I must be in the wrong class because I felt great and no one mentioned anything to me about shots. When they said I might lose my hair I realized I must be in a cancer class. I informed the nurse that a mistake had been made and I thought I was in the wrong class. She smiled and said that HEP C (hepatitis C) was called the silent killer for a reason and told me I was in the correct class.
I asked to see the doctor after class and told him I was going to reconsider the treatments and that is when the bomb dropped. He said he apologized that he didn't go into more detail with me and then informed me that the bottom line was it's the only treatment that might prevent me from dying. I asked how long I had, and he said I would not have any serious problems for several years.
I couldn't believe what I was hearing and I must have gone into shock. I thought this was just a virus that needed treatment and it would just go away. I wasn't even sure how I caught the virus in the first place. I asked him after I take the treatment would that be the end of it. Then the next bomb hit! The doctor informed me that there was only a 5% chance it would work (currently it's around 40-60%) but it was all the medical community had at the time. When I left I wasn't smiling either.
Web site about Hep C
http://www.allabouthepatitisc.com/readytolearn/about/statistics.jsp
I asked to see the doctor after class and told him I was going to reconsider the treatments and that is when the bomb dropped. He said he apologized that he didn't go into more detail with me and then informed me that the bottom line was it's the only treatment that might prevent me from dying. I asked how long I had, and he said I would not have any serious problems for several years.
I couldn't believe what I was hearing and I must have gone into shock. I thought this was just a virus that needed treatment and it would just go away. I wasn't even sure how I caught the virus in the first place. I asked him after I take the treatment would that be the end of it. Then the next bomb hit! The doctor informed me that there was only a 5% chance it would work (currently it's around 40-60%) but it was all the medical community had at the time. When I left I wasn't smiling either.
Web site about Hep C
http://www.allabouthepatitisc.com/readytolearn/about/statistics.jsp
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