The difficulty of treatment

[andiamo]

When I was 18 and suffering from the typical problems of that age, I would, during the darkest moments, lie on the floor near the stereo, smoke a joint and listen to some good music.  I would look up and dream that someday I would have the answer; I would have a wife, family, house and a career.  I thought for sure I would have that by the time I was 25.

When I was 25 and life was still uncertain, I thought I would surely have the answer by the time I was 40.  Now I am over 65 and life is still uncertain.

My wife and I sold our house and planned to move on to our sailboat for two years and not have a worry in the world.  Instead, Telapravir came along and my doctor convinced me that I might not have two years of good health.  So, here we are renting an apartment and I am in Prove 3.  

I am lying on the couch having taken a mind altering drug and listening to good music.  The mind altering drug is interferon and the result of the alteration is a dark experience

[andiamo]

I meant this forum that is split in two parts.  The link at the top of the page takes you to the medical question part.

People are very responsive to questions and there are some very well informed people that will comment.

Good luck with whatever decisions you make.  If I were stage 1, I would not treat with standard treatment.  I would wait for the new drugs to be approved.

[fingirl]

I am not sure how long I have had it.  Maybe got it in 91 in Bulgaria (I really hope not), maybe got it here at the dentinst or the nail salon.  Who knows?  I really hope that it is recent and my liver is ok.

About the log, I think it is very appropriate.  Sharing your journey will lift people's spirit and provide for some distraction from thinking about Hep C day and night.

Where is the other forum you mentioned?

[fingirl]

Yes, I agree that I should get the biopsy.  I am seeing the new Dr. on Tuesday and we will go over that.  I am also scared of it.  I guess I shouldn't be because so far I have no indication that I have a severe liver damage.  I have to stay positive and be acared about something that I don't know.  The Drs. so far say that it is not likely that I have anything severe.  My viral load is very low (13K), do you know if that plays a role when it comes to liver condition?

I am so GLAD to hear that you were out on your boat and feeling better.  My boyfriend has the boat, it is a new duffy.  It is so much fun.  We take it out around the bay...

[andiamo]

Viral load can vary greatly from week to week, so I am not sure how much of an indicator that is.  I doubt you have severe damage or you would be feeling sicker than you seem to be.  I htin it will ease your mind and help make a decision about treatment.  I would wait, if I had the time to do that and you probably do.

Do you know how long you have the disease?

The biopsy is no big deal as long as you find a doctor experienced in giving them and is willing to use some pain relievers if you need them.  You probably won't, but it is nice to know that they are available if you need them.

I have had four of them so far, and at most, they are boring, since you have to lie there for  a few hours.  I had some "referred" pain in my shoulder and that is common.  Nothing terrible, just uncomfortable.  The last doctor gave me pain meds and I felt nothing - not even bored!  I was chatting up all the nurses and having a grand time :).

If you have questions, I suggests you post them on the other board.  You will get many responders with good information.

On another subject, I am thinking of posting my log of our ocean journey from Connecticut to St Martin.  It is totally off topic, but one of the few times in my life I thought of nothing but the experience and not a single thought about HepC. I think it might be a pleasant diversion for some people and might interest someone in sailing.        

Do you think it is appropriate to do that?

[ladybug52]

Hope you're on the lucky arm of the Prove trial that is short and maybe not so sweet,
(but SVR is sweet, sweet, sweet!)
Good luck, thanks for the input on this tx's effect on our lives.
Bug

[andiamo]

I went back over some of your posts; you should get a biopsy.  It is the only way to get the information you need to decide how and whether to treat.

What kind of a boat do you have?  I went sailing this weekend and I am on the boat now.  I feel that best I have since I started treatment.  It must be the relaxing time sailing.

[fingirl]

Hang in there.  I can only imagine how hard it is but you will get through this.  The important thing is what we take away from this whole experience.  It has definitely helped me prioritize better.  Have a great weekend.  

[ladybug52]

Beautiful writing. I can relate.  As a girl in her early teens I would lie in bed at night with headphones on and play the same corny tear-jerker song over and over and cry. I had a record player and would put on my little 45 of "What's It All About, Alfie?"
Cracks me up now to picture the little drama queen, but the song still has sentimental value to me.
Well, the good news is you did find a partner and maybe someday soon, you'll be on that boat with your worries behind you.
Something tells me that you discovered the secret to life, there is no perfect time and place we just have to keep going. Life is not a race, it's a marathon!
Take care,
Bug

[andiamo]

Bug, thank you for the sweet reply.  You are certainly correct, life is a marathon with out a specific route.

I hope someday we all have a great party when this disease is finally behind all of us.

I am a great complainer; I really feel lucky to be taking the protease inhibitor and when I am rational, I believe this will produce SVR for me.

[fingirl]

Yes, I like the OC too.  Used to be in LA and recently moved to Newport.  I know about east coast weather.  I lived in Armonk and Chappaqua for a few years before I moved to the west coast.  That area is very nice and so is Connecticut.  

I have an appointment with my new doctor tomorrow.  It feels like progress.  I am looking forward to getting to the bottom of a pain in my upper left abdomen I feel on and off...and the nausea.  Did you have any of this before you started your treatment?  

[fingirl]

Thanks, I feel better today.  I have had low energy and GI discomfort too as of late.  Have not started tx yet.  Just switched doctors.  Some say, don't do it since I have a low viral load - 13K.  I guess it will depend on the condition of my liver.  I have done a biopsy yet.  This is what scares me the most but I have to stay positive!!!  How was your liver when you got diagnosed?

Yes, Newport is great.  If you and your wife come this way, would love to meet you and take you out on the boat...

[andiamo]

I didn't have any nasuea before I started Prove 3.  I didn't feel great though; low energy and general GI discomfort.

I hope you feel better.  I love Newport beach.  I worked on a software project there for 6 months back in the 80s.  A group of us rented a house on the cliffs in South Laguna - it was heaven!!

I forget, did you do any treatment yet?

[andiamo]

Glad you are feeling better.

I have been stage 3 for quite a few years now.  I was grade 3 as well, but dropped to grade 1 after tx.  Even though I did not achieve SVR, I have felt better after treatment.

Thanks for the offer of boating, we will take you up on that if we get to the west coast this year.  I offer you the same deal if you get to the east coast.  My wife and I would love to take you sailing.

I am not allowed procrit as part of the prove 3 trial, so I am very anemic and will probably have to cut back on the riba dose.  Now I am waiting for my 11 oclock VX pill.  I hate taking this stuff threee times a day.  We have to take it every 8 hours +- 20 minutes.  I walk around with a timer - what a pain, but well worth it if I finally get rid of this virus.  Sorry for complaining, I am tired and want to go to sleep, but have to stay up for the pills at 11.

[andiamo]

Orange county - one of my favorite places!

I am in Connecticut; it's beautiful, but the weather sucks most of the year.

Prove C is a research trial with a protease inhibitor for HepC.  The drug is Telaprivir made by Vertex Pharm.

[fingirl]

Thanks for the reply.  No I am finance...in other words, I am a nerd.  So, that's where the fingirl came from.  I am from Bulgaria but I live in Orange County.

What is prove C?  How is that working for you?  Sorry to hear you had to do the treatment more than once.  Stay strong!

On a fun note, boats are so much fun.    

[andiamo]

Being tired is a symptom of HepC and I certainly felt that way before treatment.  Everyone reacts to treatment differently and having treated a few times, each one was similar, but different as well.  There are more rescue drugs available now and ADs help a lot.  I am in prove C and rescue drugs (procrit) are not allowed and that  makes it much worse.

Are you Finnish?  I have a sailboat made in Finland.

[BonnieRobin]

Im with you on that 100%. Im 52. I feel the exact way.................................

[elizabethanncothron10/9/63]

HI THERE! WELL I'M NEW HERE & JUST HAPPEN 2 COME ACCROSS UR STORY. IV'E BEEN DOING THE TREATMENTS 4 A COUPLE WKS. NOW. IT REALLY SUCKS! I THINK THE WORST PART IS THE DAMN DEPRESSION. SINCE I WAS ALREADY DEPRESSES JUST WOTH LIFE IN GENERAL! LOL. I CONTRACTED THIS EVIL VIRUS THROUGH A BLOOD TRASFUSION. SO @ LEAST I CAN BLAME THIS ON SOMEONE ELSE. MY THOUGHTS & PRAYERS R WITH U AND URS. GOD BLESS!!!           ELIZABETH

[antman]

i know what you mean. i'm 51 and thought i would have had it all by now. it seems like time marches on and we stand still. i'm on tx myself now and it seems like we're paying the price for all those carefree younger years.

[fingirl]

I feel for all of you.  I can only imagine what it feels like to go through the treatment...I have not started it yet...I hope soon.  Everyone talks about being so tired.  I can relate to that.  I am sooo tired in the mornings after a good night sleep.  Did you guys feel that way before the treatment?  I am worried that I may have something else too.  I hope being this tired just from having the virus, before tx has even started, is normal...

[LSRL]

Me too.

[illo]

All I can say is, "yeah'.  Sigh.

[Forseegood]

hi! hope youre feeling better...I wish 2irish would post more often too but she has too many kids, ha ha! Anyway, you said that youre awaiting Vertex too, did your doc tell you that there probably would be a newer study phase in the fall, maybe October? Just wondering what you heard....thanks!!!

[andiamo]

Thank you all for the kind words.

SJL: Thank you for your prayers and kind words