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John T's Story

Hello;

Kind of a fitting intro for a serious discussion. Actually I am not really that serious. I have been around the world on that issue though. I'm writing this now only because I am back to the fun loving, future planning, idealistic person people once accused me of being. Of course it is easy to make this statement after walking out of the depression tunnel I stepped into 8yrs ago.

I'm not a religious fanatic or anything (I go to church on Sundays and thank him personally everyday for what he has done but that's it)but I have found out the hard way there is a God and he does help you if you let him.

Throughout my life I always flirted with disaster and even got a date with her a time or two. In high school I rode motorcycles (dirt bikes) everywhere I went. My friends and I were invincible, my parents and teachers thought I had been born with a motorcycle under me. One day while riding like nothing could stop me a barbed wire fence did. Luckily I hit head on because I watched it and as I tried to catapult over, it caught hold of only one leg. It nearly took the leg off but didn't cut the artery. Because of this they stitched me up (156 stitches) and took a wait and see approach to how it would do. The only other thing is they asked me if I had lost much blood to which I answered I didn't think so. Well , the doc said "Lets give him a unit of blood just as routine." I state this in bold because in 1977 a routine unit of blood was given to anybody who had a severe bloody nose. (maybe a little worse). At this time a routine unit was given to almost every woman who gave birth whether easy or hard labor.

Well, I lived the next 18 years proving the doctors wrong about saying that I would never recuperate much of the leg back by achieving many goals set by myself. Professional skater and skier, semi pro surfer.I looked back saying "ha" I'm too cool and nobodies ever going to slow me down. Its funny because I always felt God wanted to be present in my life but I was too busy.

Then in 1994 while I was preparing for an annual lobster feast I hosted every year, I had a funny Hic-cup. It lodged in my chest but other than that feeling I was fine and went on to the party. Eventually after everyone told me how odd I looked and my wife finally drug me to the car I decided maybe I should go to the emergency room. . When a resperitory surgeon walked by my ER module he immediately recognized a collapsed lung and next thing I now I woke up on a vacuum pump for a week. I figured this was probably caused by my diving and I should re-examine my diving technique. The doctors looked deeper. At the end of the week and after many many tests they told me they couldn't find the cause of the collapsed lung but they did find Hep C. Knock, knock I stand at the door.

They asked me a lot of questions about old habits and old injuries at which time I told them about my motorcycle wreck. They asked me if I had received a blood transfusion because of it to which I stated no. When I said this I was under the impression that a blood transfusion consisted of them finding a blood matching relative and taking blood from them and giving it to me. I was Naive. They sent me home under order to see a specialist when I got mobile. When I went to see him we talked about Hep-c and what we could do. Through the conversation I found out that a transfusion is receiving any amount of blood from another source besides yourself. We started interferon treatment 3 shots a week for six months. This was weird because I don't even like to take aspirin unless my head is falling off. I didn't respond to the interferon and the side effects were too much to handle with a full load at med school that I had been trying to get into for two years prior to this so I went off. I was feeling ok without it and I felt I could beat this thing by myself besides nobody told me this was life threatening.

I got through four years of med school and went into practice with only minor ups and downs. It seems The doctors were making me sicker with all the blood tests. It's funny because for a while I thought I felt so good maybe the doctors were wrong and any day now they would find out it was something far less serious. Then one night I went to a local brewery with my two best friends to have a beer. After having one beer at the brewery we decided to go to the apt to watch a basketball game on tv. When we got there I started feeling sick. I decided then to go home and left with my friends protesting that I didn't look well enough to drive but I reminde them that I had only drank one beer. I got a few blocks down the street when I really became sick. It was dark on a dark street so I couldn't tell what I was throwing up all I remember is asking god to please get me home so I could at least die at home. I dont remember how I got home or even walking into the house, I dont even remember what time it was. My wife came into the restroom where I was in a traditional "prayer at the porceline altar" position with blood all over everything. This was followed once again by a week in the hospital, This time from internal bleeding due to burst esophegeal varices secondary to liver disease. Knock, knock I stand at the door.

So now I am convinced I have a major health condition but I still am not going to let it depress me. I kept up my usual routine minus any alcohol and things got better again. Now since there were documented varices they started bi-weekly blood labs and for a while bi-weekly endoscopies I was refered to a hepatology clinic and they talked to me about going on a liver transplant list. This was scary but I told myself it didn't mean I had to have a new liver, it was just if needed one I would be on the list to receive one. I still didn't think I was that bad off. We continued this routine for the next couple of years with mostly good times but a few reminders of the bad times. Through clinic they always told me how great I looked for being so sick, the thing is I never really felt sick, nobody could ever say " you will need surgery in a month, six months or a year, they just said " you sure look good for how sick you are."

About two years ago I was feeling odd and my wife noticed that my color had gone almost transparent ( how can you have transparant color) so once again we took off for the emergency room. While there a doctor came in and started to explain what was going to happen and he showed me by holding his hand next to mine, I had no color to my hands or arms. My clinic doctor told me that my liver numbers were very bad and that I neeed to be transplanted right away. He said that I had been on the list long enough and it was coming up on a holiday when accidents lead to donated organs. This was terrible news as well as morbib because I always thought of myself being the galant one who would give up his life to save another. I spent yet another week in the hospital waiting but again not feeling that sick so I didn't consider this to be real. As fate would have it, San Diego had it's safest labor day in history with 0 traffic fatalities, therefore I got to go home on monday after they pumped me with 5units of plasma and 3 units of white cells and numerous other cocktails. Once again I felt great. Knock knock I stand at the door.

Well the last year I quess was the worst. I'd started to actually feel worse, My energy level dropped to next to nothing which I had considered the outdoor work I did around my house as the element that kept me healthy. I started getting winded everytime I had to walk further than a couple of blocks. My friends started looking at me with pity in their eyes. It had gone on so long that I had finally accepted that this was my fate, To slowly wither away and die. They had finally convinced me that I was sick and I wasn't going beat it by telling myself I alone wont let it happen. I still remained active though, I took a volunteer job at a golf course as a marshal which required driving around out doors on the course and observing play. During this time I began to think about my relationship with God. I realized that though I believed in him and I was praying to him a lot, I didn't have a personal relationship with him. I didn't have a holy revalation or anything like that but as I began talking with him daily I began to feel a peacefulness form. I still got sick. I still went through tests, and I still had problems with my home life but things had somehow changed. Knock knock I stand at the door.

Then the really awesome thing happened. Sunday morning my family and I were getting ready for church. We were running late but I wanted to iron my shirt. My wife had asked if I had batteries in my hospital appointed beeper ( the one they give you exclusively for the liver transplant cordinator.) I lied and told her yes when in reality I had got the batteries but I had stuck them in my pocket because I was in a hurry. I putting on my shirt to walk out the door when my wife came up to me with a look on her face like someone had died and the phone in her hand. She told me it was the transplant cordinator and they had a liver, I needed to drop everything and get to the hospital ASAP. I stood there looking at her in disbelief, I wasn't even feeling sick this day, how could I need this surgery now. Anyway I started thinking quickly about all the things I wanted to do before going in, family and friends I needed to talk to just in case I didn't make it out. At that moment I feel God stepped in and told me to just relax and let him take care of everything, so I did. I really dont remember them preping me for the surgery, I just sat down and had a conversatiion with God. It wasn't a pleading, crying, scarred talk. It was more like a couple of friends getting together just for companionship.You have but to open the door.

My surgery was the fastest (5 Hrs) transplant on record. and my hospital recovery was the shortest ( 5 days). I went in on that Sunday and was discharged on the following Saturday. All of the tubes were removed within the first 72 hours and I was on semi solid food the 4th day. I was in pain but it was nothing I couldn't handle myself without pain killers. The only problem in the hospital was I couldn't sleep so for 5 days I watched the world go by. I found out a couple of funny things that happen while most of us are asleep. Live morning news and other live broadcasts are really stupid as far as they act as if they were just called in from a new years eve party to do their work. Anyway I went home on Saturday and everything has been great. I have had 0 complications and have been able to reduce my med intake to two anti rejection drugs a day. I went back to work after six months and have return to normal life around home.

I still walk with God every day but again it is not a fanatic walk. The biggest thing about this is when it all started I was diagnosed with Hep-C which I thought Oh-well since I have to I can live with this. All along I never could get reliable answers from the doctors. A couple of the docs had actually told me they didn't think I would ever need a transplant. Even on the internet I got some of the most scary imformation or the most out dated imformation.

The way I look at it is, The lung collapse was Gods way of telling me there was a big problem coming up. All of the trips to emergency rooms were his way of preparing me for what was to come. The two years waiting on the list was the time he spent standing at the door knocking and when I finally let him in we sat down and talked about how things were going to be alright now.

I guess this ran on longer than I had expected, I started it to just drop a line to say hang in there to all of you btu it kind of turned into this story. I do feel that it taught me a few things and since experience is the best teacher now maybe I can share with anybody that might have questions. My case went to the extreme because most people with Hep-C dont go as far as needing a transplant, frankly because a lot of them die before they are diagnosed.

My only advise I will throw in here for all to read is, You may not need a transplant but if there is any concern, get listed right now. They dont have a criteria to get you on the list but they do to get you an organ if you need it. I spent two years on the list, I wasn't in the hospital dying when my name came up but I met 4 of the other 5 criteria (there are 5 complications to the Hep-C before you are transplanted) The only one not met was I wasn't in the hospital dying. This is what I credit with my doing so well ( also a closer walk with God) so if nothing else talk to your doctor about it.

If anyone is interested or has any questions please feel free to E-mail me at Legmkr@home.com.

John T.

 

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    Page last updated: March 7, 2003


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