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Surviving Hep C
I am not posting a questions but sharing my experiences with Hep C.
It was late August, 2008. I was donating blood at church. Then I received a letter from the Health Department informing me that I could not donate, I needed to go in for the first of three injections to prevent me from contracting Hepatitis A & B. That was how I found out I had Hepatitis C. How could I have contracted this horrible virus? I had never used drugs, or had multiple sex partners, or done anything else that may have infected me, at least not to my knowledge. During the early stages, I came to this site often. I needed to know what others had experienced and have some of my questions answered. This site is one of the main reasons I succeeded.
I began documenting my experiences to keep abreast of my doctor appointments and discussions we had. As I read through all my notes, I thought that maybe I could help someone, like me, that has either just been diagnosed with, and/or, going through the treatment, those in denial. I hope by sharing my experiences it might help others understand what may be down that road, and not give up, be steadfast in their commitment. Everyone experiences different side effects from the treatment, and at different degrees. I believed mine were horrific, (I’m 59 and never experienced anything like this), but I survived, and so can others.
I immediately met with my family doctor. He referred me to a Gastroenterologist. I had never known anyone that had ever had this virus and my doctor told me that it was discovered only a few years ago. Several weeks and numerous tests later, the diagnosis was confirmed. I was still in total shock.
My viral count was 12,000,000IU/mL. Hearing those figures, I knew my life was over. My doctor educated me on the cause and effect of this virus. Because my genotype was 1B, it was one of the toughest to combat, and only about 30% were successful. This news certainly didn’t make me feel any better. He said I could have had the virus for many years, and although my liver was now at stage 2 of 4, I was asymptomatic. He prescribed COPEGUS and PEGASYS.
I found out that my insurance would not cover the meds. My co pay would be $1000 monthly. I was a single parent, there was no way I could afford this cost, but I was determined to get through it somehow. I began researching the internet and found the Roche Patient Assistance Program which provided products for those patients who have medical and economic needs. I was approved and began the treatment in April, 2009.
I saw my Gastroenterologist once a month. Two months into treatment, my viral count had dropped from 12million IU/mL to 185. I was so excited, thinking that the treatment was working, but my doctor was not. He said it should have been much lower by then. He would keep me on the treatment for 3 more months to see what the count was by then. Now I was running scared but kept positive thoughts that I would get through this.
My body started to rebel; I was extremely fatigued, couldn’t stand for too long and only walk a few steps before resting. My doctor said it was a normal side effect. But then I took a trip to the mountains. The fatigue became so bad I had to be rushed to a local emergency room where I discovered that my red cell count dropped from 12.5 to 6.6 in just one month. The normal range is 11-15. I was given 3 units of blood, referred to a Hematologist, and had to return home 3 days early. This is when I realized that the next 8 months were going to really test me.
My doctor provide me with information, discovering that these drugs were preventing my body from producing the amount of red blood cells necessary for it to do the jobs it needed. He informed me about another drug which forces the bone marrow to produce excessive red cells. I began weekly injections of Procrit. This did help produce more red cells than my body produced naturally, but just not enough to maintain a good level. We both agreed that if my count fell to 9.0 or below, a transfusion would be administered.
Now I received monthly transfusions. Along with the low red cells causing fatigue and anemia, I also experienced extreme dehydration all of which forced me to go on medial leave from work. These were probably the worse of any side effects I experienced. But there were two others that ranked pretty high also.
The first were mouth sores. So bad I couldn’t eat or drink anything. My tongue lost all its taste buds, any seasonings, carbonation, and toothpaste (of all things) caused an awful burning sensation. My family doctor found the right medicine to help cure the sores. Even as bad as these two side effects were, it did allow me the opportunity to learn more about my body. And in doing so, I was able to identify when my body was not producing enough red cells, and/or, was beginning to develop the sores. I was able to manage a situation that, if not identified early enough, could create a host of problems I could no longer deal with.
The third major side effect was the dryness of my skin, mostly fingertips and toes. They were constantly dry no matter what lotion or product I used becoming cracked and bleed. I had to keep band aids on my fingertips for protection, but there was nothing to protect my feet and toes. Sometimes I couldn’t even wear socks let alone put on shoes, so walking or standing became very difficult. Then there were some minor side effects. Loss of hair and appetite, severe headaches, sleep deprivation, very mild depression, and muscle and joint discomfort.
When the side effects were at their worse, all I wanted to do was chuck it all, say no to the treatment. Unable to eat or sleep, mouth hurting so bad that I couldn’t even talk, let alone do normal everyday tasks because I was too tired, was beginning to take its toll on me. I kept telling myself “just one more day; get through just one more day.” One day would turn into two, then three, and so forth. Had I not decided from the beginning that I would stay on treatment, mine was for 48 weeks, I may not have succeeded. Going through 11 months of pure hell was better than the alternative. But the most important reason I wanted to get through it all was the two men in my life, my son, and boyfriend. My son needed me and my boyfriend is the love of my life and the strength that helped me through my worse times.
When I completed my treatment, I didn’t know what to expect. My doctors said it could take anywhere from 4 to 8 weeks. I knew it wouldn’t overnight, but now, 6 weeks later and I’m beginning to feel human again. The first sign was my fingertips: no dry, cracked, or bleeding skin. My appetite improved, gained back 9 pounds from the 22 originally lost. My taste buds are still blocked and may never fully recover. The sores, in or around my mouth, have disappeared, for good I hope. I still have a significant hair loss, but only mild sleep deprivation, fewer headaches, and joint discomfort.
One month after completing treatment, my Gastroenterologist had tests done again. All counts were looking good and, in 6 weeks (month three), more tests will be performed to ensure my counts are within the normal range. At the six month mark, final tests will be performed. If they remain normal, I was told that the chance of the virus becoming active again is highly unlikely.
I look at the world through different eyes now. I’ve learned a lot about my body and system that I might not have ever desired to know. I can certainly appreciate more of the little things in life and, not take this gift of life that has been given to me, for granted. I do hope the feelings I have expressed will not go unnoticed and perhaps help guide those that have doubts. If nothing else, remember this: we do control who and what we are.
It was late August, 2008. I was donating blood at church. Then I received a letter from the Health Department informing me that I could not donate, I needed to go in for the first of three injections to prevent me from contracting Hepatitis A & B. That was how I found out I had Hepatitis C. How could I have contracted this horrible virus? I had never used drugs, or had multiple sex partners, or done anything else that may have infected me, at least not to my knowledge. During the early stages, I came to this site often. I needed to know what others had experienced and have some of my questions answered. This site is one of the main reasons I succeeded.
I began documenting my experiences to keep abreast of my doctor appointments and discussions we had. As I read through all my notes, I thought that maybe I could help someone, like me, that has either just been diagnosed with, and/or, going through the treatment, those in denial. I hope by sharing my experiences it might help others understand what may be down that road, and not give up, be steadfast in their commitment. Everyone experiences different side effects from the treatment, and at different degrees. I believed mine were horrific, (I’m 59 and never experienced anything like this), but I survived, and so can others.
I immediately met with my family doctor. He referred me to a Gastroenterologist. I had never known anyone that had ever had this virus and my doctor told me that it was discovered only a few years ago. Several weeks and numerous tests later, the diagnosis was confirmed. I was still in total shock.
My viral count was 12,000,000IU/mL. Hearing those figures, I knew my life was over. My doctor educated me on the cause and effect of this virus. Because my genotype was 1B, it was one of the toughest to combat, and only about 30% were successful. This news certainly didn’t make me feel any better. He said I could have had the virus for many years, and although my liver was now at stage 2 of 4, I was asymptomatic. He prescribed COPEGUS and PEGASYS.
I found out that my insurance would not cover the meds. My co pay would be $1000 monthly. I was a single parent, there was no way I could afford this cost, but I was determined to get through it somehow. I began researching the internet and found the Roche Patient Assistance Program which provided products for those patients who have medical and economic needs. I was approved and began the treatment in April, 2009.
I saw my Gastroenterologist once a month. Two months into treatment, my viral count had dropped from 12million IU/mL to 185. I was so excited, thinking that the treatment was working, but my doctor was not. He said it should have been much lower by then. He would keep me on the treatment for 3 more months to see what the count was by then. Now I was running scared but kept positive thoughts that I would get through this.
My body started to rebel; I was extremely fatigued, couldn’t stand for too long and only walk a few steps before resting. My doctor said it was a normal side effect. But then I took a trip to the mountains. The fatigue became so bad I had to be rushed to a local emergency room where I discovered that my red cell count dropped from 12.5 to 6.6 in just one month. The normal range is 11-15. I was given 3 units of blood, referred to a Hematologist, and had to return home 3 days early. This is when I realized that the next 8 months were going to really test me.
My doctor provide me with information, discovering that these drugs were preventing my body from producing the amount of red blood cells necessary for it to do the jobs it needed. He informed me about another drug which forces the bone marrow to produce excessive red cells. I began weekly injections of Procrit. This did help produce more red cells than my body produced naturally, but just not enough to maintain a good level. We both agreed that if my count fell to 9.0 or below, a transfusion would be administered.
Now I received monthly transfusions. Along with the low red cells causing fatigue and anemia, I also experienced extreme dehydration all of which forced me to go on medial leave from work. These were probably the worse of any side effects I experienced. But there were two others that ranked pretty high also.
The first were mouth sores. So bad I couldn’t eat or drink anything. My tongue lost all its taste buds, any seasonings, carbonation, and toothpaste (of all things) caused an awful burning sensation. My family doctor found the right medicine to help cure the sores. Even as bad as these two side effects were, it did allow me the opportunity to learn more about my body. And in doing so, I was able to identify when my body was not producing enough red cells, and/or, was beginning to develop the sores. I was able to manage a situation that, if not identified early enough, could create a host of problems I could no longer deal with.
The third major side effect was the dryness of my skin, mostly fingertips and toes. They were constantly dry no matter what lotion or product I used becoming cracked and bleed. I had to keep band aids on my fingertips for protection, but there was nothing to protect my feet and toes. Sometimes I couldn’t even wear socks let alone put on shoes, so walking or standing became very difficult. Then there were some minor side effects. Loss of hair and appetite, severe headaches, sleep deprivation, very mild depression, and muscle and joint discomfort.
When the side effects were at their worse, all I wanted to do was chuck it all, say no to the treatment. Unable to eat or sleep, mouth hurting so bad that I couldn’t even talk, let alone do normal everyday tasks because I was too tired, was beginning to take its toll on me. I kept telling myself “just one more day; get through just one more day.” One day would turn into two, then three, and so forth. Had I not decided from the beginning that I would stay on treatment, mine was for 48 weeks, I may not have succeeded. Going through 11 months of pure hell was better than the alternative. But the most important reason I wanted to get through it all was the two men in my life, my son, and boyfriend. My son needed me and my boyfriend is the love of my life and the strength that helped me through my worse times.
When I completed my treatment, I didn’t know what to expect. My doctors said it could take anywhere from 4 to 8 weeks. I knew it wouldn’t overnight, but now, 6 weeks later and I’m beginning to feel human again. The first sign was my fingertips: no dry, cracked, or bleeding skin. My appetite improved, gained back 9 pounds from the 22 originally lost. My taste buds are still blocked and may never fully recover. The sores, in or around my mouth, have disappeared, for good I hope. I still have a significant hair loss, but only mild sleep deprivation, fewer headaches, and joint discomfort.
One month after completing treatment, my Gastroenterologist had tests done again. All counts were looking good and, in 6 weeks (month three), more tests will be performed to ensure my counts are within the normal range. At the six month mark, final tests will be performed. If they remain normal, I was told that the chance of the virus becoming active again is highly unlikely.
I look at the world through different eyes now. I’ve learned a lot about my body and system that I might not have ever desired to know. I can certainly appreciate more of the little things in life and, not take this gift of life that has been given to me, for granted. I do hope the feelings I have expressed will not go unnoticed and perhaps help guide those that have doubts. If nothing else, remember this: we do control who and what we are.
You have already battled the worse, accepting your diagnosis. During your hardest times, come here. Expressing your thoughts, getting it out, and discussions with others is one of the best ways to get back, and stay, on track.
Best of luck, you will survive.
Best of luck, you will survive.
Thanks for the post. I'm getting ready to start tx next week, and I really hope I don't have all of the symptoms you had, but I figure if you could get through that, then so can I. Great inspiration!
Hope you SVR too!
Hope you SVR too!
Thanks for posting. I documented, too, and reading your post was like reading my journal, sort of a welcome to my nightmare feeling. Boy, your doctor was a negative guy. Gave you lower odds than other docs would, discouraged you when you weren't completely clear by 8 wks. I remember feeling overwhelming gratitude that I survived the treatment. I'm not sure that people are aware that patients who continuously crash (can't keep blood counts out of danger range) have a different TX experience and those who can hover just below normal ranges should be grateful for having the typical miserable experience. Glad you made it. Pulling for you for negative PCR's.
Congratulations on finishing such a challenging treatment! It looks like you had a really rough time.
From what you posted, I conclude that your doctor included a 4 week post treatment PCR to determine the viral load and that it is still negative. That is great news!!! You're getting there and it will have been all worth it.
Your taste buds should return to normal very soon. Be careful, the pounds pile on very fast. I had lost about 14 and put them back on ... and some more... in no time. Food will start tasting so good that you cannot resist.
As to the hair, my experience was that it still fell out until ca 2-3 months post treatment and then it started growing back fine. My hair had gone from curly (I'm mixed) to straight during treatment. Now 1 year post I got all my curls back and have been able to cut all of the tx hair off (which I had to have permed after treating), little by little.
I also had a tough treatment, but not nearly as bad as you. I equally look at the world with different eyes. It is an eye opening experience which changes something in all of us. Hopefully to the better.
I wish you a big fat SVR... you are well on your way to it!
From what you posted, I conclude that your doctor included a 4 week post treatment PCR to determine the viral load and that it is still negative. That is great news!!! You're getting there and it will have been all worth it.
Your taste buds should return to normal very soon. Be careful, the pounds pile on very fast. I had lost about 14 and put them back on ... and some more... in no time. Food will start tasting so good that you cannot resist.
As to the hair, my experience was that it still fell out until ca 2-3 months post treatment and then it started growing back fine. My hair had gone from curly (I'm mixed) to straight during treatment. Now 1 year post I got all my curls back and have been able to cut all of the tx hair off (which I had to have permed after treating), little by little.
I also had a tough treatment, but not nearly as bad as you. I equally look at the world with different eyes. It is an eye opening experience which changes something in all of us. Hopefully to the better.
I wish you a big fat SVR... you are well on your way to it!
This is a very nice, insightful post. Good for you, you sound like a very strong person.
I also had the awful tastebud thing going on. Mine ended up turning to thrush which I do get quite often now but at least the tastebuds are working.
Good luck with the bloodwork coming up!
Denise
I also had the awful tastebud thing going on. Mine ended up turning to thrush which I do get quite often now but at least the tastebuds are working.
Good luck with the bloodwork coming up!
Denise
Congratulations on your successful treatment.
Sounds like you had a rough time and persevered, good for you. Inspirational to the rest of us.
Thanks for sharing.
Robo
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