My name is Adrienne and I would like to share with you my transplant experience.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.
Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.
My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.
We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…
I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.
The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.
Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.
In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.
I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.
Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me
LACK OF AWARENESS STOPS HEPATITIS C TESTING:
Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.
Wednesday, April 28, 2010
Monday, April 26, 2010
"This blood may contain hepatitis or other viruses" and it did............
My name is Candice and I'm 59 yrs old. I worked as a pediatric RN until I was 45, when I started having pain all over. I went from Dr to Dr and ended up with a Rheumatologist who diagnosed me with fibromyalgia. I was put on pain meds and had my blood tested every 3 months; went on for years. At one point I could barely walk from the bedroom to the couch without becoming out of breath. At age 56 I decided to start riding lessons and bought a horse to get some exercise. I started feeling better physically, but still couldn't work. At 58 I decided to get a facelift, hoping it would make me feel younger. The surgeon did several blood tests prior to the surgery, including HIV, Hepatitis A, B and C. I was shocked when he called and told me I had Hep C. I had 2 pints of blood transfused when I had a c-section in 1978, and I still remembered the warning on the bags-"This blood may contain hepatitis or other viruses".
I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.
I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.
Get The Facts About Hepatitis C Viral Load
Think A High Viral Count Means Advanced Hep C?
Maybe Not.......
Think A High Viral Count Means Advanced Hep C?
Maybe Not.......
Sunday, April 25, 2010
There is always hope.......Daryl
So many have been through some incredibly tough times,and yet you remain so strong, and such a positive force here for others. I an inspired every time I come here, or to Betty's blog.
Without the inspiration and love that you all give so freely, I could not face my own challenges, however much they pale against the battles that others have, and continue to face.
You are all amazing people, with amazing stories of courage and strength. Who could not be touched deeply, and motivated to carry on, with reading about your experiences.
Life has it's share of ups and downs...Oh yes. You all have reminded me to keep my head up, be strong in the face of adversity, and remember to cherish life and to have hope...even when it seems like there is none.
There is always hope, and around you all there is always love.
Some thoughts I wanted to share with you fine people.
Love you,
Daryl
Without the inspiration and love that you all give so freely, I could not face my own challenges, however much they pale against the battles that others have, and continue to face.
You are all amazing people, with amazing stories of courage and strength. Who could not be touched deeply, and motivated to carry on, with reading about your experiences.
Life has it's share of ups and downs...Oh yes. You all have reminded me to keep my head up, be strong in the face of adversity, and remember to cherish life and to have hope...even when it seems like there is none.
There is always hope, and around you all there is always love.
Some thoughts I wanted to share with you fine people.
Love you,
Daryl
Saturday, April 24, 2010
Caroline's Blog Within a Blog.....to be continued
TUESDAY, JANUARY 26, 2010
First time for everything....
So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.
As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)
TUESDAY, FEBRUARY 2, 2010
First appointment for the study...
So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.
So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.
FRIDAY, FEBRUARY 19, 2010
Last test before the study starts...I hope.
Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.
FRIDAY, MARCH 19, 2010
It's begun...
Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.
They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.
MONDAY, MARCH 22, 2010
So far, so good...
The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.
I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.
Well thats it for now.
FRIDAY, MARCH 26, 2010
TGIF!
Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)
Wednesday, March 31, 2010
So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.
Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.
Laterz....
MONDAY, APRIL 5, 2010
Another shot, another day...
So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.
I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.
Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.
FRIDAY, APRIL 9, 2010
4 shots down...44 to go.
Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.
The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!
Well thats it for me...laterz
THURSDAY, APRIL 15, 2010
April 13th visit update
Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.
I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.
Thats all I got for now...laterz.
MONDAY, APRIL 19, 2010
Wow...I'm anemic already...
Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.
Laterz...
First time for everything....
So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.
As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)
TUESDAY, FEBRUARY 2, 2010
First appointment for the study...
So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.
So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.
FRIDAY, FEBRUARY 19, 2010
Last test before the study starts...I hope.
Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.
FRIDAY, MARCH 19, 2010
It's begun...
Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.
They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.
MONDAY, MARCH 22, 2010
So far, so good...
The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.
I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.
Well thats it for now.
FRIDAY, MARCH 26, 2010
TGIF!
Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)
Wednesday, March 31, 2010
So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.
Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.
Laterz....
MONDAY, APRIL 5, 2010
Another shot, another day...
So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.
I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.
Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.
FRIDAY, APRIL 9, 2010
4 shots down...44 to go.
Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.
The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!
Well thats it for me...laterz
THURSDAY, APRIL 15, 2010
April 13th visit update
Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.
I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.
Thats all I got for now...laterz.
MONDAY, APRIL 19, 2010
Wow...I'm anemic already...
Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.
Laterz...
I'm a fighter from way back....... Helena
I found out I had Hep C in September 2007. I was caring for my husband who was going through cancer treatment. Unfortunately he didn't make it and died in November of that same year. It was not a good year. With all the rest of the stress of children and babies and custody going on with my son.
I waited until 2009 to start tx. I was excited about it too. When I found out I had Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.
When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.
I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.
I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.
I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.
Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.
In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.
OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena
I waited until 2009 to start tx. I was excited about it too. When I found out I had Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.
When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.
I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.
I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.
I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.
Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.
In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.
OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena
Friday, April 23, 2010
carrying around a dragon for almost 30 years...Dan
I served in the US Army in the early 1970’s when I was honorably discharged after 6 years with a disability rating of 30% and a sleeping killer that I was not aware of for another 14 years. Let me rephrase that; I knew something was wrong but no one could identify and name it until many years later.
In 1973 I was severely injured when a drunk driver ran a red light and T-boned the car I was driving on the driver’s side. I suffered a massive hemo-pneumo thorax, ruptured esophagus, ruptured spleen, ruptured diaphragm, lacerated liver, multiple fractures, a 3 centimeter tear to my right ventricle and a separated pelvis. I pumped blood into my lungs through the ventricle tear for 3 days. In that time frame and through my second open chest surgery I took 196 units of blood and exhausted the supply of three counties blood banks.
After I left the service I found myself frequently tired, often depressed, constantly aching, nauseated and slightly feverish. I had pains in my abdomen, pains in my joints, and pains in my legs. My quality of life was lower than I had ever known and no amount of tests, observations or treatments ever seemed to improve my quality of life or provide any answers. I had my perfectly good appendix removed to try and stop the stomach pains. I found out my appendix was still good by the lab results. I had been a corpsman and I knew how to read a lab report.
In 1984 out of frustration and with medical records showing I had been treated for non-A, non-B hepatitis I filed for service connection with the Veterans Administration. I was denied after several months of waiting. I was given no reason for the denial other than evidence was not provided to support my claim.
I continued to be sick off and on with an assortment of symptoms and no one was ever able to determine the cause of my ailments. I was told by several doctors that I needed to get over my trauma injuries and learn to live with myself. I was given medication after medication but nothing ever seemed to work to clear up my ailments. VA doctors kept trying to refer me to psychiatry. I was going in circles. Tests and evaluations, medication and referrals, more tests, more evaluations, more referrals, back for more tests.
Sick and tired of being sick and tired I quit going to doctors. My symptoms did not stop; I just stopped seeking any answers.
After being sick and vomiting with stomach pains I sought help one more time and found a VA doctor who ran a test on me for Hepatitis C. It was late 1990 or early 1991. I don’t recall exactly when. Now I finally had a name for the beast that was making my life miserable. My viral count was less than 1 million, my liver was not swollen and the biopsy showed no signs of cirrhosis. We talked about treatment options and they did not sound that good so I declined.
I followed up with that doctor until 1999 when I moved away from that hospital. I moved to the Midwest in 2001.
I sought out care at a VA hospital in Illinois. I was told at this VAMC that they had no treatment plans for drug addicts with Hepatitis C and if I wanted that kind of care I would have to go elsewhere. I was only at that hospital for an annual blood draw to check my liver enzymes as I had learned to do from the other VAMC where my good doctor was still practicing. I let this new doctor know that I was not a drug addict and in fact I had a security clearance and I took random drug screens whenever asked to support my job as a government contractor.
My enzymes were up and so was my viral load. I was told by the mid-west VAMC that treatment was expensive and I would need to be carefully screened before that option ‘might’ be offered to me. I chose not to be screened.
I sought out and found a new civilian doctor, outside of the VAMC. It was a good choice because I found a good doctor who took good care of me. We discussed treatment and all of my options. I went back to the VAMC and I was told again that I might not be offered treatment for Hep C and that even if I was offered the treatment I would have to do the whole 48 weeks and if I quit or had to stop that was it, my treatment options would be back to zero again with no chance to try again. I returned to my civilian doctor hastily.
I took the treatment for 48 weeks with no help from the VAMC whatsoever. As a geno 1A my chances of clearing the virus were about 50\50. With the help of other vets at HCvets.com I filed for service connection with new evidence and a new attitude. After 16 months I was granted 10% for hepatitis C.
It’s not very much of a price to pay for carrying around a dragon for almost 30 years. Not when all of the evidence (no use of universal precautions, a lot of exposure to other peoples blood, needle sticks and all of those transfusions, and let’s not forget the multi-unit jet injectors) was so easy to gather and present directly out of my medical files and personnel jacket.
My appeal for a minimum of 20% is still pending.
In 1973 I was severely injured when a drunk driver ran a red light and T-boned the car I was driving on the driver’s side. I suffered a massive hemo-pneumo thorax, ruptured esophagus, ruptured spleen, ruptured diaphragm, lacerated liver, multiple fractures, a 3 centimeter tear to my right ventricle and a separated pelvis. I pumped blood into my lungs through the ventricle tear for 3 days. In that time frame and through my second open chest surgery I took 196 units of blood and exhausted the supply of three counties blood banks.
After I left the service I found myself frequently tired, often depressed, constantly aching, nauseated and slightly feverish. I had pains in my abdomen, pains in my joints, and pains in my legs. My quality of life was lower than I had ever known and no amount of tests, observations or treatments ever seemed to improve my quality of life or provide any answers. I had my perfectly good appendix removed to try and stop the stomach pains. I found out my appendix was still good by the lab results. I had been a corpsman and I knew how to read a lab report.
In 1984 out of frustration and with medical records showing I had been treated for non-A, non-B hepatitis I filed for service connection with the Veterans Administration. I was denied after several months of waiting. I was given no reason for the denial other than evidence was not provided to support my claim.
I continued to be sick off and on with an assortment of symptoms and no one was ever able to determine the cause of my ailments. I was told by several doctors that I needed to get over my trauma injuries and learn to live with myself. I was given medication after medication but nothing ever seemed to work to clear up my ailments. VA doctors kept trying to refer me to psychiatry. I was going in circles. Tests and evaluations, medication and referrals, more tests, more evaluations, more referrals, back for more tests.
Sick and tired of being sick and tired I quit going to doctors. My symptoms did not stop; I just stopped seeking any answers.
After being sick and vomiting with stomach pains I sought help one more time and found a VA doctor who ran a test on me for Hepatitis C. It was late 1990 or early 1991. I don’t recall exactly when. Now I finally had a name for the beast that was making my life miserable. My viral count was less than 1 million, my liver was not swollen and the biopsy showed no signs of cirrhosis. We talked about treatment options and they did not sound that good so I declined.
I followed up with that doctor until 1999 when I moved away from that hospital. I moved to the Midwest in 2001.
I sought out care at a VA hospital in Illinois. I was told at this VAMC that they had no treatment plans for drug addicts with Hepatitis C and if I wanted that kind of care I would have to go elsewhere. I was only at that hospital for an annual blood draw to check my liver enzymes as I had learned to do from the other VAMC where my good doctor was still practicing. I let this new doctor know that I was not a drug addict and in fact I had a security clearance and I took random drug screens whenever asked to support my job as a government contractor.
My enzymes were up and so was my viral load. I was told by the mid-west VAMC that treatment was expensive and I would need to be carefully screened before that option ‘might’ be offered to me. I chose not to be screened.
I sought out and found a new civilian doctor, outside of the VAMC. It was a good choice because I found a good doctor who took good care of me. We discussed treatment and all of my options. I went back to the VAMC and I was told again that I might not be offered treatment for Hep C and that even if I was offered the treatment I would have to do the whole 48 weeks and if I quit or had to stop that was it, my treatment options would be back to zero again with no chance to try again. I returned to my civilian doctor hastily.
I took the treatment for 48 weeks with no help from the VAMC whatsoever. As a geno 1A my chances of clearing the virus were about 50\50. With the help of other vets at HCvets.com I filed for service connection with new evidence and a new attitude. After 16 months I was granted 10% for hepatitis C.
It’s not very much of a price to pay for carrying around a dragon for almost 30 years. Not when all of the evidence (no use of universal precautions, a lot of exposure to other peoples blood, needle sticks and all of those transfusions, and let’s not forget the multi-unit jet injectors) was so easy to gather and present directly out of my medical files and personnel jacket.
My appeal for a minimum of 20% is still pending.
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