Dear Anas

I wish your Mom well....yes fatigue is one of the strongest side effects of this treatment. She will need a lot of rest.
I will keep her in my prayers.
Have a blessed holiday season.
Cristine

Srarting week 12

After 4 weeks on procrit, my hemoglobin continues to drop. The doctor has discontinued the Incivek. I got a full 11 out of 12 weeks. She has also discontinued the Ribavirun and interferon for one week to give my hemoglobin a chance to increase.
I feel just awful.
I am of course concerned that the virus will come back with no medication....I am trying to keep the faith and praying the treatment will be a success.
I have to admit that not having to eat the 20 grams of fat 3 times a day is a pleasure.

Week 10

I am just entering my eleventh week. Only 2 more weeks of this hateful Incivek. Although I just had my 3rd shot of pro-Crit my hemoglobin continues to go down 7.3 yesterday.
My doctor is decreasing my ribavirun and withholding it for 4 days.

I had another near passing out and vomiting experience this morning. It totally wipes me out. Physically this is much harder then last time.

I just want it to work....honestly that is all I care about.

For the first time today I really got scared and concerned that this may not work. I have generally been very positive but today was a bad day. For some reason I have this dreaded sense of complete loneliness today. As they say....this too shall pass.

December 5th

Last week I started Pro=Crit to increase my hemoglobin. i will take my second injection today. It takes awhile for the hemoglobin to rise....I look forward to more energy. Had an embarrassing
experience at Bloomingdales yesterday. My neighbor took me so I could purchase a gift. I nearly passed out while paying and projectile vomited all over. I will have to wear a hat and big sunglasses next time I go. All kidding aside, it was quite scary. Only 3 more weeks left of the Incivek. Yeah!

This time around is so much easier emotionally....Thank God....I really appreciate that

Week 8

Just had my 8th injection. I will be very happy to be over with the Incivek part of this treatment. Eating 20 grams of fat 3 times a day has proved to be a challenge as I have no appetite at all.

I have to admit it is so far going quickly....I am sleeping so much so the day goes quickly when you nap so often : )

I'll get through...I think my head is in the right place.

Hi Magalinda

Thanks for writing.

I am on Incivek, ribavirun and interferon entering week 8. I haven't had any itching just one rash that has cleared. I am just really tired and weak from anemia.

This is my second time too 48 weeks last year without Incivek and 24 weeks this time around. I wish you well in your treatment...keep me posted.
Cris

Week 7

Things are getting a bit more difficult. As I am writing his I have my 2nd fever of the treatment thus far. My last hemoglobin was 10 and white count 1.8

Life really is about perspective though isn't' it. I received a call from a friend today who told me she was recently diagnosed with stage 3 Ovarian Cancer.

I honestly hung up the phone with her and thanked God for my disease the new drugs and my prognosis.

She though like me is very strong...we are survivors...I know she can beat her cancer. I am happy that this experience has given me some perspective to be able to help her through. We can help each other.
I told her about my blog and she wants me to teach her how to set one up.
Today I am extremely grateful.

Thank you

I forgot to thank Sharon from Australia for reaching out....please keep in touch!

November 7th

It's about 8pm and am just coming off a terrible day. Tonight is my 6th injection. I have a lot more nausea this time around and I am exhausted which makes me think my hemoglobin has dropped some more.
Emotionally I am in a much better place then last round (so far anyway).

I could honestly sleep all day and night.

I just needed to complain a bit...tomorrow will be better.

November 2nd

I got great news after only 13 days of treatment my viral load was Non-detectable.

After this last blood work my hemoglobin has dropped and I am feeling signs of anemia. I just had my 5th injection last night so today I do feel quite fatigued.

I want to thank those of you who have commented on my blog, it really helps so much to hear from you. If anyone would like for me to correspond directly, please provide your email address. I think we can really help one another.

So far the biggest symptom is fatigue, still working and able to accomplice most of my daily activities. If I didn't have to work this would be much easier but it is probably best to have something to do.

Week 2 October 10th

I had blood work done. My rash has become worse so the doctor prescribed a stronger cream. My white count dropped to 3.8 and my hemoglobin actually went uo to 14.9. I thought that was a good thing but the doctor explained I was dehydrated. I need to drink more water.
A bit queasy but not nauseas.
THE BEST NEWS.. After only 6 days on the protocol my viral load dropped to 53!!!! No zeroes attached
53.....it's amazing
Tired and napping quite a bit but really not too bad (yet) : )

And so it begins...week one

October 4th....first day of treatment.
This treatment is 24 weeks. First 12 weeks with weekly injections, ribavirun and the new drug Incivek. After week 4 my viral load has to be 1,000 or less or treatment will not continue. If I am successful the following 12 weeks the Incivek stops and the other 2 drugs continue.
On September 13th my Viral load was in the 900,000 range. Each week I will have blood work and see the doctor.
when I injected that evening it all became very real to me. By the end of the week I had a rash under my arms (expected). The doctor wants me to call the office with any side-effects.
An over the counter cortisone cream should do it. So far so good. A bit fatigued and insomnia but I am sleeping after being prescribed Klonopin. Thank God...the insomnia last time around was torture.

September 12th

I had my first visit with my new doctor at the hepatitis center. I am so excited that she feels I am a good candidate for the new protocol. What a difference it makes going to a doctor who specializes. I feel I am in such better hands now and that my symptoms will be managed.
One of most frustrating experiences with the last doctor I used for treatment was that neither he or his staff had any knowledge or empathy of the myriad of symptoms that come along with this treatment.
If i could make one suggestion to anyone contemplating treatment it would to be to see someone who specializes in hepatitis C. A routine gastroenterologist is not adequate.

Once all of the approvals go through for the medication I will start...the sooner the better.

Some disappointing news

I had my three month viral load post treatment and found out the virus had returned. My count was 330,000.
I was so disappointed...I knew something was up but I was really hoping that my thyroid medication just needed to be adjusted.
I was feeling very fatigued.
I hung up the phone that morning extremely disappointed but by the end of that day I had an appointment set with a new doctor at the hepatitis center in Hackensack.

I know the new treatment is available and I was just hoping I would be a candidate. I didn't want to go on treatment again (who would) but I had about 5 or 6 weeks of feeling terrific post treatment and I really want that back.
I will do whatever it takes to be healthy!

August 2nd 2011....

I just received a nice message from Loueita but was unable to reply to her directly....so I decided to post.
Thank you Loueita.....7 months thats great....the end is just around the corner so hang in there!!! It is so worth it. And you are absolutely correct, that Aranesp shot was not at all fun!

I am so touched and so inspired by those of you who have reached out to me.I am approximately 8 weeks post treatment. I feel amazing.

I know how difficult it is and I know that no one really understands the side effects of the treatment. Unless of course you have gone through it.

God Bless you and if you want to include your email address I will be happy to write back in hopes of helping you through.

June 25th One month since last injection

I started physical therapy yesterday for conditioning. I had lost quite a bit of muscle tone and stamina. I actually worked out for about 2 hours and I felt amazing. I am so grateful to feel this good only one month post my last injection.

Today I am going to hit some tennis balls YEAH!!

If anyone asked me during treatment if it was worth it...I don't know if I could say yes. But I can honestly say it was......

If you are going through it, Hang in there!

Post Treatment...22 days

Amazing......I feel so well so soon. The shortness of breath...GONE...fevers....GONE....headaches....GONE.
I can't remembeer the last time I took an advil it must be 2 weeks.

I really thank God for pulling me through this experience....I am so grateful and look so forward to getting stronger everyday. i look forward to resuming all of my activities and adding some that are new.

It really is a bit of a miracle.

The eve of week 48

I haven't blogged since week 44.......I have been too tired. I can't believe tomorrow is my last injection!
I have fired my doctor in the past couple of weeks...I would absolutely suggest using a hepatologist instead of a routine GI doctor. My doctor absolutely did not help in managing my symptoms.......he was quite dismissive and not aware of the multitude of side effects associated with this treatment. Thank God I had people who went through treatment who could help me through the process.
I am so anxious to feel better......I can't wait to exercise, play tennis, go for a walk......anything!
This year has been a year of growth, pain, disappointment, love, friendship and self awareness. I am sure all of the lessons will become clearer in the weeks and months to follow.
I have already started to wean off the anti-depressant and can't wait to be medication free....so much to look forward to.

Weeks 41-44

I haven't blogged in the past few weeks but if I had it would have gone something like "I feel like crap, I feel like crap"

I have 4 more injections to get and had to battle the doctors office to get my prescription taken care of.

I think everyone that works in a GI office should be required to spend some time with a patient going through Hepatitis C treatment. Perhaps there would be some compassion.

The doctor told me that his staff said I was rude...You betcha.....no one in the office would commit to helping me even when I explained the urgency. By the way the prescription was faxed over by the pharmacy on March 31st. It's April 30th.....reallY??

I need to find a new doctor when this is over.

Week 41

The past few days have been quite difficult. More nausea then usual, migraines and the fatigue is worse then ever.

I keep thinking of the saying What doesn't kill us makes us stronger. Well, if that's true I should be Popeye by the end of treatment.

Relationships

I have really lost several relationships through this process. I am not quite sure what to make of it. For sure I am on edge....most of the time. I have though over the past couple of months placed virtually no expectations on the people around me.

Expectations are a killer for me. No matter what it is that we all go through I think we just want to feel validated. I don't want anyone to tell me how I SHOULD feel......I feel what I feel...it's my behavior that counts.

I wish I didn't feel certain things... and I am sure my addiction history proves that for quite some time I didn't want to feel anything at all.

I am not always right.....I know that....but I am also not always wrong. I think the slogan "Live and Let Live" is quite appropriate

Week 40..the final countdown!

8 more weeks I can't believe it.
I can't wait to like Thursday and Friday again.
The past couple of days have been pretty good. I don't want to inject and feel crappy. I can do it....for 8 more weeks...I can do it

I just have to ask?

Are texts and emails really a great way to communicate with people?

What ever happened to phone calls or I don't know?? Visiting someone who is not well?

I feel crappy.....don't want to text...too tired

Week 39...9 more to go!

I had a fairly active busy week this week and was able to accomplish mostly everything I needed to for work. That hasn't happened in awhile. My head is feeling clearer then it has since the fall. I wonder if my thyroid is finally regulated.

I can really feel the end coming. I am trying to decide what to do once this is all over and I am feeling better.

I really want to go on an African Safari......

One fun side effect

I know one other person who also had this side effect.
Excessive eyelash growth. My eyelashes look amazing....: )

Weeks 37-38

I didn't think it was possible to be so tired. I could sleep all day. I now know why I have stopped grocery shopping.....one end of the store to the other feels like a marathon.
10 more weeks to go.
i want to write...this blog helps...I am so tired I can't think of the words.

Weeks 33-36

Ok...February in to March..I can't wait for Spring.
I know the warm weather will make me feel better. I really don't feel well everyday at this point. I am exhausted no matter how much rest I get.

Week 36---Only 12 more to go! Thank God!

Weeks 29-32

January is now turning in to February and things are basically the same. My head feels foggy all the time and I feel out of it. I can't get enough sleep.
It turns out the medication has affected my thyroid and am now on a new medication for hypothyroidism. Just what I want....another drug.

Lately I have been thinking so much about the one thing I am most grateful for (next to the cure, of course)...I simply no longer care who knows that I have hepatitis C. I am so over myself and realize that people are at times just ignorant to the facts. Statistically 40% of patients don't know where they got the virus. People believe that it is sexually transmitted but in heterosexual patients I have read that there is no evidence to that.

I just don't care anymore.....people can think whatever they choose. I jokingly said I was going to tell people I got it from my prison tattoo....after all...isn't that the type of answer people really want to hear.

It's liberating, frankly to have this fairly in the open....while I am not screaming it from the mountaintops, if people ask...I am candid.

What has happened has happened...I just look forward to a healthy future.

I have also learned about expectations.......when I expect I am usually disappointed....I am really working on this.

I have started to answer "fine" at the inquiry to how I feel. I am too tired physically....and emotionally to say anything else.

Week 25-28

It's now January..........
The snow has kept me (and everyone else) in the house even more then normal as many work days had to be missed.
I've started to develop some migraines.  All other symptoms are status quo and I can not wait for the winter to be over.
I am very isolated and I don't receive as many phone calls.  I don't pick up the phone either as I really don't know what to say.
I feel everyone is sick of hearing about how I feel and I don't do anything...there is nothing new to say.

I usually have a good sense of humor and I am quite self deprecating but I have a hard time finding things funny at this point. Though I can see the humor in some of my memory lapse antics...trying to change he tv channel with the phone..losing my cup of coffee in the house..things like that do still make me laugh.

I wish I had more company...I don't invite people either so a lot is my fault too.  I feel as though I don't have anything to offer anyone right now...even my conversation is limited.
I know things will get better once this is over....I really do.

Weeks 21-24 December

By now I am back to work after a 6 week absence.  I am doing the best I can but am not working to my potential.

People are visiting less and less and everyone is so busy with holiday activities.

On a cerebral level...I understand this but emotionally I am taking it personally.  I start to wonder what would happen to me if I became incapacitated and I become extremely fearful.
I know right now I am self-centered but I don't know how to get out of myself.  I spend most of my time alone and I constantly think.  I know I would feel better if I were around people but I don't feel well enough to do anything about it.
I feel stuck.
People mean well..(I think) and will say things like...why don't you take a walk.  I think to myself " Don't you think if I could...I would...I used to walk miles each day" I really want to say "I am not Lazy...I am sick"  I am having a lot of these conversations with myself lately.  I have to call someone else that went through treatment.  I do and feel better almost immediately.
Validation.....just what I needed!

Weeks 17-20 Excellent Prognosis

I am pretty sure that the results actually came to me around week 13.  However I am not 100% sure of dates.
My results show absolutely zero virus in my system...I am so thrilled and know in my heart I am cured.  My doctor won't say those words and I understand but I know it!

I am stll feeling badly and have now developed a low grade fever that seems to come most weekends. The anemia is starting to improve and I am not as short of breath as I had been.
It's right before Thanksgiving and everyone is getting busy with the holidays.  I really can't get too excited this year as thought of Christmas and shopping and decorating are too overwhelming.  I  am not going to deal with it this year.
I am really starting to feel quite lonely as everyone is so busy with their own lives and I feel as though I am just standing still .I don't get out of the house at all right now and am not driving so I have to rely on other people for rides.  It's becoming more and more difficult to ask for help...I am so used to being independent.

Weeks 9-12 and 13-16

As I am updating this journal..it makes me realize how great it would have been to write as it was happening.
The pharmaceutical company provided a journal, the first few weeks were so easy I abandoned the project.  What did I know...what do any of us know. As prepared and informed as I thought I was.....I had no idea what to expect. 
The month of September is a bit of a blur to me.  Work was becoming increasingly difficult.  My mind was so foggy and my memory and thought process was definitely affected. I can't remember the exact timing of all of this but the end result was I was anemic.  All of my symptoms were an affect (effect? can never remember) of my organs not receiving enough oxygen.
It took 2 weeks before I could get the necessary medication as a result of a shortage from the company and a lack of follow up from the staff at the doctors office. 
I wound up meeting my doctor at the emergency room so I could get my first dose.  As this medication is not consider an "emergency room" medication...I spent 5 hours while the hospital decided if they could give it to me.  Thank God my doctor showed up to override protocol.  Normally they will only prescribe if the hemoglobin is below 10....mine was 10.1
It's not the count that is that significant it's the percentage drop over a period of time.  Mine dropped 4 grams and qualified me for this very expensive (approximately 900/shot) treatment.  I am extremely grateful to have insurance.
I need to digress a moment.  When the ER doctor was interviewing me, one of his first questions was "How did you get Hep C"
I really wanted to ask him if it would matter how he would treat me...but I didn't which is a miracle as by now I am so irritable, depressed, exhausted and angry.
Note to doctors:  You may want to consider when and how to ask.  If it is really necessary for you to know.
 As far as I know only HIV and Hepatitis C patients are asked this question...we feel bad enough...please show some compassion.
This drug takes time to work and October 18th I had to stop working for awhile.  I spent the month of October on my couch exhausted, depressed, irritable and extremely sad.  I felt that  no one understood me.
By this time I lost 25 pounds, my hair was falling out and I developed sores in my mouth that made it very difficult to eat.  I felt very misunderstood and fairly unsupported.
Very few people understand this treatment an I get that more and more each day.  I said to a friend during this time that I wished all of my hair fell out so people could see I didn't feel well. (of course I didn't mean that)
It's just people asked so many questions and said so many things...my favorite was "Well you look good"
I felt extremely invalidated and I was getting more and more angry and depressed.
By now I read all about the ribavirun rage syndrome.  I am here to tell you it's real! When my doctor asked if I felt suicidal I replied "No, but I may be homicidal"  I laughed of course but I was agitated and quite frankly pissed off at the world.
I felt so alone.

March 3rd! A Milestone!

I had my 36th injection today!  I am officially 3/4 of the way through....12 more weeks.
I can't wait!

Weeks 5-8

It's now the beginning of August and I am inexplicably out of breath and exhausted.  I can't sleep and a nap is absolutely impossible.  When I lay down to rest my eyes are wide open.
As I research the medication...all 3 medications (the antidepressant, ribavirun and interfuron) list insomnia as a possible side effect.
I am developing shortness of breath with minimal effort.
When I visited the doctor with the symptoms he referred me to my internist to follow up. The tests were normal (EKG, chest Xray) she did hear some wheezing in my longs.  As I have a history of exercise induced asthma she gave me an inhaler.  I was due for bloodwork in a few days so we were going to wait to see what the results showed.
By this time I was becoming very limited in my activity.  The simplest tasks (getting the mail, walking the dog) were exhausting.  Walking up one flight of stairs made me out of breath.
It was hard to believe that just a few months back I was able to work out and run around.
It's scary when your body lets you down.  I was starting to wonder if I would ever feel normal again.

July 2nd 2010 Weeeks 1-4

Treatment started.  I took my first injection  and first set of pills.  I was off from work not quite sure how I would feel.  About 6 weeks prior I started an antidepressant to ward off the common symptons associated with this treatment.

I sat on the couch most of the day....fearful of the unknown and really not too sure what to expect.  A friend stopped over later that afternnon and asked what I was doing.  She said " Are you waiting for side effects to start" "Well sort of" I replied.  We both had a laugh but in truth....everyone reacts so differently it's hard to know what to expect and I was scared.

Week One through Four was relatively uneventful though I did develop a rash from my elbows to my armpits on both arms.  From the beginning I developed a sensitivity to heat and sun but for the most part the first 4 weeks were uneventful.  I was able to work and I played tennis for the first 3 weeks.

During this time a viral load was run and the decrease in virus was significant.  The doctor was very encouraged that the treatment was working!  I was cautiously optomistic.  I felt very strongly that I would be cured.  I would not have entered in to this treatment unless I felt that way.  I did my research and was quite sure I was moving in the right direction.

On a manageability scale of 1-10...I would say weeks 1-4 were a 9.5

March 1st 2011 Week 35

I woke up this morning with the same feeling I had since about week 8.
I wanted to post while the feeling is fresh and will fill in weeks prior later today.

Every morning I awake as if I have not slept.  The mornings are hardest and I feel overwhelmed by another day.  Every task seems unmanageable.  My head is so foggy.  I feel derpressed, lethargic and unprepared for another day.  It's as though I am living in the movie Groundhog day....every day feels the same and I don't know how to change it.

I wish I had journaled sooner...

I was diagnosed with hepatitis C in the early 1990's. In 1997 I started treatment. At that time, I injected with interfuron 3 times a week.  After several months my viral count was still high and treatment was discontinued.
During those months I experienced fevers each day of injection and fatigue that was indescribable.

I asked my doctor what having hepatitis C meant in the big scheme of things...would I die....become sick? He told me that I should just live my life. That's what I wanted to believe ..and so I did.
Let me also point out that at that time I was an active alcoholic (though trying to get sober) so denial played a big role in how I lived my life.  If I could stick my head in the sand and not deal with life...I would.  Most times though I found myself in the bottom of a bottle.
By the grace of God...I took my last drink in April of 1999. I started feeling physically better. My physical emotional and spiritual health most definitely improved.

I really started to take care of myself, started going for yearly physicals and regular check ups.  The hepatitis was obviously still present though I accepted that this was something I would just have to live with.  I always felt tired, more so then I thought to be normal.  But I was active...I worked full time had a busy life worked out and was in fairly decent shape for my age...but this constant fatigue always gnawed at me.  I felt like I was constantly yawning.

In January of 2010 I started experiencing some fairly troublesome GI issues.  After countless tests and procedures...no clear answer but the question posed to me by my new doctor was "What are we going to do about this Hepatitis"?
You see, my blood work was a mess! Several autoimmune indicators were abnormal. Holy crap! Do I have Lupus? There were so  many indicators abnormal and as it turns out all due to chronic liver disease.  I was 51 years old...traveling, workin, playing tennis and working out.......I didn't want to stop...and I did not want to be chronically ill.
Over the years  had been reading and following the reatment changes for Hepatitis C.  The statistics were impressive, even for someone like me with a 1A genotype and a history of failing treatment.  I needed to make a decision it was difficult.  When is a good time to take a year out of what you know your life to be?

My time began on July 2nd 2010........................

The next blog will begin as treatment begins...