Week 30 and Counting

Well Friday will be shot # 30 of 48. It has been a long time since I have posted anything. Here is what is up for me. I went through having severe infections about two weeks ago. (Strep, Sinus, Pharyngitis, Laryngitis, Bronchitis, and DOUBLE Ear infection, and the stomach flu all at once) IT HAS BEEN HELL. (Excuse my language) They ended up giving me a shot of Rocephin and 10 days of Amoxil a shot of Phenagrin and pills of that as well then some Diflucan to keep from getting thrush.

It took me some time to get over this and I felt better for about a week and I am now starting to get sick again.

I had chunks of hair falling out and had my head shaved and got a wig. I haven't been able to wear my wig like I would like because my head itches so bad.

I was wondering if anyone else is having or has had problems with sores in their mouth and in the corner of their mouths? If so do you have any suggestions on how to help this? I have these so bad that I can't eat. Even just drinking water burns my mouth.

My numbers have dropped low enough that they thought they would need to start some other meds to boost my immune system but then they seemed to jump back up a little just before they were ready to give me some extra help.

I can't wait for this to be over.

Enough for now.

TRYING TO STAY POSITIVE

Well I am trying really hard to stay positive about all of these sides. I keep telling myself that the sides are temporary and hopefully the results will last a lifetime. I am on my fourth throat infection with thrush. My neutrophils keep dropping then going back up then dropping again. I have had to go in more often for blood work than usual because of this. Some weeks I have a couple of days that I feel really good and other weeks I don't have any good days. I am always thankful for the days that I do feel good. I was hoping to keep up with posts but it is most of the time the furthest thing from my mind. I am also pretty anemic if my numbers drop anymore than I will be reducing medication and starting procrit.

Well enough for now hope all is well for everyone else.

ITS BEEN SO LONG

Just want to start by saying that it has been so long sorry for no updates. I have had some rough days. I have been having some pretty bad sides.

I was unfortunate enough to get strep throat last week. My family doctor gave me a Z-PAK five day dose. This was on Thursday. On Friday I felt worse and a doctor from my work was kind enough to give me some Mary's Magic Mouth Wash. This however didn't really help. By Sunday I was so sick that I could not even stand to open my mouth let alone swallow. I decided I better go see the doctor at my work. Went in and it was a doctor that was not happy with the looks of things. He sent me to the ER because he was worried that with the way things looked there was a chance that my WBC had dropped way to low and that there may be infection in my bloodstream. I went to the ER and they did a CBC they said that the count was low but not low enough to be what he was worried about. I ended up with a diagnosis of Thrush lucky me so with some more wonderful medicine I am finally starting to get over this nasty stuff.

I went to my doctor today for my 12 week check-up and the doctor says that if my WBC has dropped any more he will most likely want to decrease my PEG. They also told me to be sure to tell anyone that is going to give me an antibiotic that I need something for the Thrush they said that because I am Immune Compromised I will get this every time that I take any thing like this.

Some sides are better at this point but the fatigue has really set in. I have lost about 15 pounds and that is always good.

The nurse in my office was telling me that they have had 4 people drop out of the study so far. I let her know that was not an option with me. With the wonderful clearing virus in two weeks I want to continue to do everything I can to have a better chance of this not coming back.

I never have any #'s to post to compare because I just don't ask for the actual #'s. I think I will see if I can get them.

Don't have to go back for 4 weeks.

Shot six is completed

I have completed shot six and will be going to the doctor tomorrow. I will find about about blood counts and such. I have a few sides but I am able to deal with it. I will be so happy when this is over but also nervous to know if the virus will stay gone.

Work has been manageable but also tiring.

REALLY BAD DAY

Well my day started with leaving the hospital this morning (my son had a sleep study) with no sleep and going to work. When I got to work my neighbor called me he was to feed and water our animals this morning because my son's sleep study was for last night and all day today. He called to let me know that my beloved dog Kato 13 years old had died. I feel so awful for not being here. So I ended up leaving work and going back to the hospital. I didn't want to tell my son until we got home. When we got home we told my son and he is devastated. Kato was a very special dog. Matthew has seizures and this dog knew before the seizure would start that it was coming. He also knew when my son would be asleep and get fever or sick. My family all showed up and we had a small memorial for Kato. This is how special he is.

To make the day worse when I got home I realized that the freezer has been pushed open by some food and everything had thawed and made a huge mess.

Then the day just kept getting worse my little chihuahua has apparently gotten into a fight with my cat and his eye is not looking so good. I will need to take him to the vet in the morning.

When it rains it pours and I not sure how much more can pour down on me before I break.

Shot # 4 DONE only 44 to go!

I have made it through the first month and it feels great that a month is over. I have some very big news. I went for my two week labs a couple of weeks ago. Yesterday the nurse from my doctors office called me. I started at 5.8 million VL and the two week results are
DRUM ROLL.........

CLEARED VIRUS IN JUST TWO WEEKS!!!!!
This was very unexpected when the nurses drew my blood they told me not to expect to clear virus due to the high VL before starting. I was so happy to hear this result that I didn't ask about any other results. I will go back in on Wednesday to have my 4 week blood work done. Getting this news on Friday before my shot made it a little easier to do the shot knowing that it is working.

3rd shot down

Got the 3rd shot done last night. I took the Rozerem last night and it helped me sleep through some of the sides. I haven't felt so great today but hope that tomorrow will be better. Back to work on Monday so I have to feel better. Right now it seems that the tiredness, muscle pain, and headache is the worst. I did loose it for the first time yesterday. I was trying to print some papers out that I needed and my printer was not working properly. I tried really hard to take it apart and work on it and ended up throwing it. My husband went and bought me a new one as a birthday present a little early. I usually have much more patience with computers and printers and technology but I don't know I just snapped. I felt pretty stupid after I did it.

Got some much needed sleep

I went for my two week check on Wednesday and let them know that I was having a hard time sleeping. They gave me some Rozerem. It is not supposed to be habit forming. The nurse told me that it would take a couple of days to get in my system. I took one Wednesday night and only woke up one time in the middle of the night, however I slept all day today. I think the medicine just helped me get caught up on some much needed sleep. I am not going to take it tonight as I must go to work tomorrow and don't want to chance being to tired. I figure that I will take it Friday after my shot and hope to sleep through the sides. The nurse practitioner said that I look anemic. Not sure how she would know that but the labs will tell for sure. If I am the first step will be to reduce the amount of Ribavirin and see if it gets better. If that fails to work then I will start Procrit. The nurse said that with a VL of 5.8 million I should not expect to clear virus in two weeks but maybe by four weeks. I can't wait to get my numbers and hopefully have something to look forward to.

Shot two was just as bad as shot one. I am hoping that 3 will be a little easier. It seems that exactly 5 hours after the shot I get the uncontrolable urge to move my legs I can't sit or lay still. Then the fever kicks in and I start shaking all over. I have had some problems with my neck and back the past two weeks. I have had problems with my neck for about two years now off and on. I had an MRI about a year ago and it showed 4 buldged and 1 herniated disc in my neck. I went to see a neurosurgeon and he sent me for a temporary nerve block. This did help but it seems that the problems are coming back.

FEELING SO MUCH BETTER

I am feeling so much better today. I think that part of my problem is that I was not able to eat anything from Thursday until Monday. As far as the bad taste the only thing that seems to help is to drink a little bit of Coke when it gets really bad. I am not sure that I will ever get used to taking all these pills. I went from taking 1 synthroid a day to taking 24 pills a day counting vitamins. That is just crazy. I am still working two jobs however the second job is going to let me just come in when I feel well and stay home when I don't. My second job is doing the Billing for a doctors office after they close. My first job has been pretty demanding lately and I hope that I can continue to keep up with it, but if I fall a little behind my boss is well aware of what is going on and has been very supportive.

Matthew is so happy that school is out. He was disappointed today because he was supposed to go to my sisters and go swimming and the weather was not nice enough to do so. I hope that he gets to by the end of the week.

My son and husband have both been very good to me through the ups and downs over the past week hope they can continue to handle it as well.

WHAT DO I DO ABOUT THIS METAL TASTE IN MY MOUTH?

Between the nasty taste and the headache it has not been a good day. Everything that I eat tastes like it is spoiled or something. Does anyone have any suggestions for making this better? The Tylenol is not working very well. Right now I am trying to just drink, drink, drink.

Start Day Shot #1

I went for my first shot today and to find out what arm I am in. I got Arm 6 of the Schering trial that I am in. This means that you take the Interferon once weekly, Ribavirin two tablets in the morning and three tablets at night 200 mg each, and the study drug SCH 503034 200 mg tablets four tablets every 8 hours. This arm contains the most amount of medication and it lasts for 48 weeks. Because my doctors office was chosen to add the additional arms I was told that I would get Arm 6 or 7 automatically. Arm 7 has less Ribavirin. The study will now pay for Procrit and the nurse told me today that I will most likely need it. They said that everyone in Arm 6 will most likely need the Procrit. Did you know that that stuff is $800 per shot and you need it once a week. That kind of robbery should not be allowed.

The first shot went OK I guess. I ended up with a fever of 102 for about 7-8 hours, severe headache, I was so cold that the temp in the house was 90 and I had 4 blankets on me and was still chilling. I haven't taken any pills yet I will do that about 10 p.m. I am a little scared to take the pills as I am just starting to feel a little better from the shot.

Well got to go for now still not feeling the greatest.

DOWN IN THE DUMPS

I don't know what the deal is but it seems that everyone is testing me this week. I have found that I am on edge right now. I am most always a really calm let things go kinda person and right now I am not. I got into it with a neighbor and even cursed at her. She did deserve it though she is trying to cause problems for me over my fence. When she found out that she couldn't get me in trouble for it she decided to come down and try to pursuade me and my husband to do what she wanted us to do. Well that didn't go so well and then she proceded to call the police on me for my fence the next day. When the police told her there was nothing that they could do about it she was not happy. They did come down to my house to let me know that she had a problem and had called them and they told her that there was nothing they could do. After hearing all this I cursed at her again and she called the police on me again. Of course there was nothing they could do about this either. I let them know that if she stepped foot on my property I wanted her arrested. They also relayed this information to her.

On top of this stress I set in the emergency room with my Uncle last night. He is having problems and I am the one that does most everything for him and my Grandmother. It is hard to come home at 6 am and go to bed and get up at 8 am.

Just when I thought things couldn't get worse I talked with my sister tonight and she is upset that my son wants to play at the water park part of Holiday World. She thinks that we should just tell the kids that they get to ride the rides and if that is not good enough then we will go home. I don't know that I want to spend approx 200 dollars to watch my son be sad about not getting to go to the water park part. She now says we can go to Holiday World if we want and they will just go to Kings Island instead.

I hate it when people can't just get along. You know everyone has made such a big deal about how they want to make sure that they help me if needed on treatments but all they show me on a constant basis they do things like this that they know kills me. I JUST LIKE TO GET ALONG WITH EVERYONE.

Sorry for venting on here but don't really have anyone else to vent to.

May 31st is the official Day

I spoke with my doctors office today. They called me to let me know that I will for sure be starting treatment on May 31st. Some things came up and we didn't get to go to the zoo last weekend. We ended up having a cookout with a couple of family members. We will be going to Holiday World this weekend. We haven't ever been there and it sounds like a lot of fun. Matthew doesn't know yet I want it to be a surprise. I can't wait. I am not as nervous this time about starting treatment for some reason. Maybe just because I have been through this 6 times. All will be well. I also think that it has helped reading about everyone else not having such bad times on the treatment.

FUN, FUN, FUN

We have made plans to go to the zoo tomorrow and then go to Holiday Word next Saturday or Sunday. I figure that we should get in a few fun things with my son before starting treatment seeing as how summer break is coming up. We haven't ever been to Holiday World and it sounds really exciting. We will be going with my sister her husband and son.

NEXT SCHEDULED START DATE

I went to my doctors office today to have my pre-labs re-drawn as it has been to long since the last time they drew them. They scheduled me to start on May 31st. They said that due to the revisions they were waiting for the protocol to be done being reviewed by an IRB. The IRB is a group of people that are in charge looking over the paperwork. The don't work for the drug company or the doctors office and they have to say that everything is in order and the doctors office and drug company are looking out for the best interest of the patients. They were to have a reading and discussion on this yesterday, so as long as they like it my start date will be a go. If they don't like it the start date could be postponed again. I see that Denise and Terri both got Arm 1. I wonder what is in store for me. Part of me thinks that because the study has additional arms in my doctors office I will be more likely to get one of them. ONLY TIME WILL TELL.

GOOD NEWS? BAD NEWS? CAN'T DECIDE

Well I called my doctors office today and asked if they knew if I would be for sure starting treatment on May 14th. They can't tell me for sure so the anticipation hangs, however they don't think that the date will stick. They are waiting for the addition to the study before they can start anyone. This means that if this start date doesn't stick then I will go through the entire sickness in my stomach when another one gets near. This will make 6 times that I have had to expect to start treatment and then didn't. I don't know if they understand how hard this is on people or maybe they do and just don't care.

Getting Nervous Again

Well here we go again I am back to 1 week to start date for the 5th time. I am still not convinced that it is really going to happen this time therefore I haven't requested any time off from work yet. I am going to call my doctors office to see if they are at all sure that I will be starting on May 14th or not before I request a couple days off work. I always seem to get myself worked up when start dates get close and I don't know how to stop doing that. As much as I would love to be put off again I hope that I am not so I don't have to anticipate another start date. I guess I'm ready to just get on with this so I can start getting it over with. I have been keeping busy with work but it really doesn't keep my mind off of it.

This wonderful little man is what keeps me going along with his dad. Isn't he precious! This is a picture from this school year. He wanted to dress up so bad (he really likes to dress up). He went to school hoping to impress a little girl that he likes and she wouldn't even talk to him. He didn't let it bother him and said that he would continue to dress up. By the way his name is Matthew.

Matthew is our only son, however we have a rather large family consisting of 3 dogs, 1 cat, 2 rabbits, 1 bird, and 2 fish.

MY HCV BATTLE

I am a 27 year old female with Hepatitis C genotype 1B. I contracted the virus as a newborn. I was born 3 1/2 months early and needed multiple blood transfusions. Thankfully they saved my life, unfortunatley I contracted this nasty monster. I was not aware of the Hepatitis until 2006. The virus has been pretty kind to my body so far, however it is now starting to cause problems and do more damage. From what I hear this virus most of the time doesn't cause problems for the first 25-30 years and I'm in that range. My current VL is 2 million 6 hundred twenty thousand. I have a husband of 9 years that does not have the virus and an 8 year old son that also does not have the virus. I work in health care. I do all of the training for our computer program. I also work a second job doing the billing for a doctors office in the evenings.

THE DECISION FOR TREATMENT

I on first thought was not going to jump into treatment, however because of the fact that the virus is starting to do more damage I will be starting the treatment. I was fortunate to be able to get into a study. I will be taking the Ribavirin and Interferon as well as a study drug SCH 503034 by Schering Plough. This medication is a Protease Inhibitor. There are high hopes that adding this drug will drastically improve your chances of clearing the virus. I have a tenative start date of May 14th however I have been going through trying to get started on the treatments since December 06 and have seen about 5 start dates come and go.

MY CONCERNS WITH TREATMENT

As I said earlier I have a husband of 9 years. He is disabled due to some extensive back injuries and 3 back surgeries the third ending with Spinal Meningitis. This makes me working very important for us to survive. My son has epilepsy and this concerns me. He has more problems with the epilepsy when there are changes in the structure of his life. I hope that I can keep things as normal as possible for him. He also has ADHD and requires lots of attention. He normally goes off of his ADHD medication for the summer, however I am thinking of talking with his doctor about what is going on and see if I can leave him on it this summer.