Hepatitis C & Leukemie ; Claudy’s, Story (part 1 )
Hepatitis C & Leukemie – Claudy’s story
English; My personal story about hepatitis C
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“Hepatitis C & Leukemie” My story
Hepatitis C & Leukemie
The story of
I have hepatitis C, with the type genot nr; 1 per cubic centie liter blood, 600,000 viruses., Which is part of the most aggressivst virus, the advantage is, I have very little viruses. Normal for geno type nr; 1 has about 100000 millions viruses. Everything started in 1999,
Eddy (my husband) and I we did think about to stop to have more kids, we already do have three grown up childrens. Gyl 15 years Robin 13 years and June 11 years. And we did talk to my gynecologist, we went there with the question of an sterilization.
After the examination the doctor said “wait until you birth you kid and after that I can sterilize you”. I was at least in the 3th month pregnant. Of course we were very happy about it. In that time we didn´t know that the baby will be my live-saver. So small and already such a big task.
Ahhh, thats the reason of my tiredness,we thought. We were very happy. In june 1999 my gynecolgist sais to me “Yes Claudia we need to do test for AIDS and mongolisme, that routine” It was no problem for us, if we don´t hear anything until friday everything will be ok. It was almost weekend and no phone. We were very happy everthing is ok with our baby.
Monday morning I went to the doctor, I had much pain in my lower abdomen. That the doctor said to me “ah yes I didn´t call you because I still don´t know the results of the test. AIDS is negatv (yes we did knew we don´t need to worry about AIDS and so there was just one point we needed to worry about) but you have do to a test with your baby for mongolisme. My word just crushed down. I needed to go to Leuven to the hospital to do another examination to be sure that our baby is healthy. This evening I had to call my doctor again because I had one more question about Leuven. That was the beginning, the doctor said to me “Claudia I need to tell you one more thing, I did conceal something, you got hepatitis C. You are a danger for you whole family, no kiss, no sex, nomore touch anybody and just nourish of milk products” the doctor just dropt the phone receiver.
To this time we didn´t know that I can´t infect somebody just like this, I could do all those things and I also can eat evrything, I have to give about 1 liter of blood to somebody before I can infect somebody. I just sat down and cryed, cryed and cryed and was thinking “now I am sitting here as an time bomb and I am the reason that my whole family can be infected”
If my husband Eddy and my Mom wouldn´t be there for me I had hang myself. We did know what hepatits A and B was but not what hepatits C is. We did talk to our doctor, he gave us an explaination an he also said that itis important to go to Leuven to the hospital. We went to a professor, his first question was “Why did your gynecolgist test you?” I just could say ” I don´t know” I didn´t even know he tested me for Hepatitis and I don´t even know the sickness. The professor explained everthing to us and also made some tests. The gynecolgist gave us totally wrong informations. Sex, kissing, touching nobody gets infected that way, I have to give about 1 liter of my blood to somebody before I can infect somebody. I can eat everthing but no alcohol and I have to relax a lot.
As we were back home we did call my gynecolgist and asked him how he got the idea to test me on hepatitis, if I looked yellow or other…!!!! The doctor just freaked out “What do you think, I can test what ever I want and don´t need to ask you and I also don´t need to ask for a agreement. I can test what I want and you don´t get a explanation. Leuven takes all my costumers” and he dropt the phone receiver again.
We did began to examine everything be ourself. We did everything step by step, first of all we tested the Kids, Eddy and my Mom and furtunately all five were negativ, this were since a long time good news. There was a risk of 0.6 % to get infected for our unborn baby, we just can do a test when the baby is one year to see if the baby is healthy or not. Than the next good news came, the test about mongolisme was also negativ and everybody was relieved. Eddy started to search via internet in America and allover the world. Than we had some confidential conversations with doctors (sorry we can´t say any names because of some reasons). Out of this conversations we did know that there was a small risk to get infected throught pierceings, drugs and tatoo´s but the biggest risk were in bloodtransfusions before 1990. We also heared stoys about toothbrushes, but if you know that the main reason blood is and you believe in all storys there will be crowed hysterie.
We wrote down a list.
1. I have a small tatoo, we were a few and everthing was very hygienic, everbody got tested and nobody accept me had hepatiis C, so its not from there.
2. My belly pierceing got made by the same way and everybody got tested ans everbody negativ accept me. Also very hygienic.
For us it was very important to found out how I got infected.
There were two more possibilities.
1989 I had a bad accident and the bones under my right eye were completly broken, and so the doctors took a piece of my hip bone and put it under my eye and I got blood but the hospital moved and they can´t find my papers, that means no widness on paper. Two years before Lauro was born I had another operation at my gynecolgist, yes this gynecolgist.
Eddy and me decidet to fight against the sickness and not against the doctors and do do the best out of it.
We borke up the contact to this gynecolgist. In November 1999 Lauro got born at an sunday evening about 17:30, everybody was very happy, three weeks to early but everything was okay. My sister-in-law Pascale were with me in all that hours. Eddy did wait in front of the door otherwise he would be out of power, he can´t see blood. hihihihihahaha.
The nursing in the hospital had no experiances with hepatitis C. Ignorance was the problem.
We got a room for ourself, they touched Lauro and me only with gloves, I just got plastic plates and cutlery where I could eat and trink out of, so the nurses could through the stuff directly. After long discussions I could go to the smoking area, after I finished a cigarette they imetiately bagan to clean after me. But after I found out they didn´t clean Lauro´s bottom (the excrements were still on the bottom) I was done with it. I asked Eddy to take us home. We asked the pediatrician which was very kind to Lauro and didn´t wear gloves, she agreed that we could go home, but I had to come back in a few days for another check. That was ok for us. So Eddy took Lauro and me home.
At the beginning of January 2000 (6 weeks after Lauro´s birth) I got sterilized. We didn´t want the risk with this sickness again. As Lauro was a bit older than 1 year, we made the test with him and after two weeks the phone was ringing, Lauro was heathy like the rest of the family, it was the best present ever. The first cure, 14 days after my sterilazion, I went to Leuven for a liver treatment, we had to do this two times befor it went well and than they hid my lung. I had a lot pain and coughed blood, in this moment I had just one thing in my mind “If I have to die, than let me go” the pain was so terrible.
After a few day I was doing better, the little bear I have gotten from my husband did help me a lot and of course just to think on my family did also help me a lot. Everytime I need to go to the hospital the little bear has to come with me. In February 2000 I did start my first cure and after 2 months the virus wasn´t in blood anymore, after 7 month (September 2000) I had to stop the cure, my whole body was to weak for it. This 7 months of cure were very difficult. In Leuven they made a study. On one hand my body was very strong, becuse I always did many sports (horse riding, swimming, fitness) and worked a lot but on the other hand I was to weak because of the pregnacy, sterilization and the liver treatment… I began on one day with Reverinne and inject, it was like a hid on my head and felt fast in a deep sleep. I thought “Oh if this is going like this the whole time, what can I do”. Lucky me, it was just the first time like this. But I got all side effects I cou ld get and I lost a lot of my long hair and they dried out. I went to the hair dresser and he did cut my hair very short that you couln´t see how thin they were. Tears droped out of my eyes but I had a lot hope that they will come back. The muscle pain like you have a bad cold I could kill with pain killers. My ears and my skin tried totaly and I got big crusts.
But the biggest problem were my gullet and my mouth inside, everything tried so bad that I just had a big wound. It took a long time til I could eat and drink again, the pain was unbeliveble strong, not even the massages didn´t help anymore. My body smelled like medicine even I took a shower. Our kids did worry about to lose their mother. So the doctors decited to stop it, my body couln´t handle it anymore. After 6 month after I stoped the cure I got tested and yes the virus was back. But the were some more points we shouln´t forget. I am handicapped of 66% and it is still like this, but I keep on hoping that I will be one day healthy. We try to be a normal family for our kids. It is not working all times but the family got used to live with the situation. We talk a lot to each other and so we are normal family.
My husband did cancel for me a lot. He quit his job in his company for computers and webdesign and took a normal job just to stand by my site. Eddy was about 30 years DJ. Music is his life and he quit it just for me. Eddy said ” It doesn´t matter for me, my family is the on the first place in my life, and they need me now”. I got a husband you wouldn´t find a second time, he his my hero without him I wouldn´t be here anymore. Yes and then my Mom (Already 75 years) who drove from Germany to Belgium about 500km back and foreward for years, to support Eddy and me and the 4 kids (3 of them were in the diffcult teenage age and a baby), she was cleaning, cocking, iron…!!! She is also a hero for me. Right now the 3 older kids got their own students´apartments and they come to visit us or ask for help and our youngest it going to school yet. So it is a bit easier for Eddy, he still got his job but he started with the music and webdesign again and I think that is super. Also my Mom got more time for herself. The situation like this after my 3 cure (later more) is because I have to be stabil and I have to wait for mew medicine. In September 2001 I took all my straight and went back to Leuven to start a second cure. First the doctors wanted that I still wait a bit longer, but after a few tests the doctors though it´seven better to start to this time. So I did start my second cure. We will never forget this date and many people togethet with us. It was the 11th September 2001, everybody knows this date and it is also the birthday of my husbands mother. I had to take 2 pills in the morning and pills in the evening. At the 19th I also got injections (3 a week). I took the medicine to a special time, not a bit erlier or a bit later, I did it at the first time, but I could hanle it better than in the first time. I wanted to try out, but what happened in the first cure is better to avoid.
But my body didn´t care about it and it didn´t take a long time and all sid effects were back. Aa soon as one side effect began I tried to fight against. It bagan with pain in my muscles, the painkillers were my best friends and I tried to keep the pain low with warm baths and the solarium and even my skin got very try was the best way the solarium to keep the pain low and also the real sun was very good for me but nobody could explain why, so they also were my friends. Carry on like that as long as it is working. The sun and also the solarium were good for my depressions. I have to be honest these are just little aid´s and no big wonders. I also got massage´s and I lost a lot of my hair again, but don´t be so fast I took a kind of hair pills.
After 1,5 months the virus was gone again and after 9 months I had to stop the cure again, said the doctors. My gullet was totaly broken I just could drink a little tea and nothing more. Now I was already 7,5 months without the virus and the doctors were almost sure that everything will be fine with me. My little aid´s helped me to do the cur for 9 month.
To build up my body again. Now I had to build up my body again and to give him a lot strength. For the doctors I was healthy when my body got my old strength back. What a nice thought. I started to build up my body step by step but after a few months there was still no change.
But I don´t had to worry about it, what years took need a lot time to show some changes, but I don´t want to hear it, I just wanted to be healthy. After 2 years there was still no change even how hard I tried and then the doctors also started to worry about it, but they stayed on their opinion that it need a lot time. Eddy and me bagan to plan what we shel do when I am healthy and as what I should work. But the only thing was my body who didn´t wanted like we wanted. In August we made the last test of my blood, my liver was mot really ok, oh no the virus is back, thats the reason why I feel so bad and my body still felt very weak.
No, no said the doctors don´t make yourself crazy, it never happened that the virus is back after 2 years. Maybe you ate something bad. Two weeks later the phone was ringing, they got all the results of my test. The suspense growed and yes the virus was back and I did knew it and my world just broke down in to 1000 pieces. All our hope and plans were gone just like this. Every morning I stand up and tried to build up my body and every morning I start there where I did stop in the evening and I don´t have success with my work that made me sick, but I don´t give up than one time there will be a medicine which can help me to get healthy.
What now the 3 cure? I got depressions and I started a 3 cure but I don´t realy wanted it. We did contact a hospital in Hannover, Medizinische Hochschule Germany, we drove there. The professor advices to stop the cure, it just would be bad for my body and we wouldn´t see any results. Than I had to go to Brussels, there I had to do another liver treadment. But this time they did it down my neck and not like before down my rips. I had so much fear at the first time so Eddy could go with me into the operation room, they did hope it would keep me quiered.
It didn´t work very well that Eddy was by my site, so they had to put me into anaesthesia. Everything went well this time without any problems. Hannover, Brussels and Leuven had the same opinion, the only thing they could do with me to keep my situation in a constant way and just to do another small cure if it is really bad situation just to suppress the virus (it wouln´t be so painfull for me and my body) until they got new medicine on the market. What a future. The cures left rheumatism in my hand-, knee-, and food joints, also bone stones in my back, this bad tiredness, my skin is always itching and my womb also got hurt. They try everthing that I can keep my womb as long as it possible, so I can change my blood once a month so I can push out many viruses. I also have many tiny pimples and they can hurt, because my liver can´t reduce all of the poisen in my body, so they searching for a new way.
I also have a lot pain in my stomache. Stay constant, but how? Legalon is a thistle extract it helps that the liver can´t oxidy´s. Different herbals help me to protect my Immune system. Zinc is helping me to keep the virus away from my liver. But important is a lot sleep, relaxing and no stress. All 2 til 3 months, they test my blood and they also test me on vitamins and so on! That they can react if something is not ok and that they can do an treadment as soon as possilbe. What can I take for the bone stoneing, and the medicine for the rheumatism is to strong for my body. Listening to your body is very important. I can´t eat or trink anything with alcohol. Try to eat healthy, a lot fish and less fat. If you fall in a depression just go to your doctor, he need to give you something against it, it is not a shame many people with bad sicknesses take them. It is very important!! If you got the news you got a very bad sickness, you have to live. You need to have a g ood relationship, to talk to eachother is very important, not even the patienet, also your partner, the kids andthe whole family have ti learn to live with the situation. If the kids are still at home, talk to them, explain the situation and even Mom or Dad is sick that they have to live their lifes and to build up a future.
Talk to your kids teachers so they also can support your kids if they can´t control the situation anymore. Respect eachother, understand that everybody can have a bad day. It will be more easier for the whole family to handle the sickness if you do it this way, because it means for everybody to adapt oneself and that it not easy. If the patient rest a lot is it also more easier for the whole family. Talk to your friends about it, that they don´t have to be worried to talk about it, than they come and visit you and don´t fell unsure about it. But the main thing is never lose your courage, one day we will be healthy. And if you feel one day realy good, enjoy that day, go out in the nature or make you pretty for your man or woman ore do something else …! As I had very bad days, Eddy took me in the car and we were drinving around that I see something else.
In the old days I could dance the whole night, but this is not possible anymore and if we go out now than I sit on a chair and swing my arm a bit or do some dance steps, but this is better than nothing, don´t you thing? At the new years eve I met a woman, she got breast cancer and yes she also sat a lot or did some dance steps with his man and yes for sure it is better than nothing. Sometimes you can´t see how sick you are and it can happen you underestimate the sickness. Sometimes if we got some visior, I just fall into sleep because of this tiredness, but our visitor they know about it and it is no problem for them and when I wake up again I just carry on talking. I think, if you talk a lot the sickness can be much more easier and it is important that you don´t close yourself. A woman got one advantage, if see put on some make-up and she is sitting somewere she don´t looks sick, so this is a disadvantage for a man or maybe not.
Right now is the year 2008
Right now I am much more sick than in in 1999, I got many side effects because of the chemo therapie´s, they realy broke my body.
I got rheumatism, also Artrose, also cryoglogulins, that means there grow little crystals on my muscles and this is very painfull and I got Osteporose, and for the future there is no chance to be healthy. And i have Chronische Fibromyalgie . I looking foreward to get the chance for an liver transplantation.
But we don´t give up and still hope.
Best regards Claudy
This is a personal thank´s to my husband Eddy, my kids and my Mom.
Without them I had never the courage to fight against the sickness.
I am sick but because of my family I am very happy.
I love you, big kisses
For my family
Copyright © Claudy
Thank you very very very much to Katrin for the Translation Right now is the year 2009
Hello Dear, I was on the 08.09.2009 in the Universities Hospital in Leuven. My liver is back infected. Normally I will start with medication at the end of October or November. Every day I have to take 5 chemistry pills from 1 medicament, 2 chemistry pills from another medicament. And 1 chemistry syringe in the week. And this 365 day’s in 1 year. I can live normally, but not so fast :):):):):) lol. So don’t worry about me, be happy that we all alive, Yes :):):):) Okay, for my family and me it will be a difficult year, but I have the chance to get 1/3 genes better or at least stable. So don’t worry, I will work together with all on the site from Kate and on my site hepatitis C, only not so fast hihihihihihi :):):):):) Big Big lovely warm Hugs and Big Kisses from Claudy