The journey begins....

[dooklebug]

I made my appointment with a Hepatologist for next Tuesday at UT Southwestern in Dallas today.  Pretty sure the initial meeting will be for information and blood tests, since I don't know my genotype or anything else other than viral load.  I have also contacted my colo-rectal surgeon about the continuing abdominal pain to, hopefully, schedule my appendectomy before the end of the year.  Just want to have ONLY the tx to think about when it starts and not all the other stuff I have going on.  I'm not sure if I have already been through the inital emotions when I found out I tested positive for the antibodies or if I'm just going through the motions of doing what needs to be done right now and putting off the meltdown.  I've always been one who functions well in the midst of a crisis only to fall apart later.  What I do know is that this forum has already been a godsend for me and I strongly suspect I will become more and more dependent on this community as time goes on.  I am grateful to have already formed some relationships with many of you and look forward to having and being a friend.

[dooklebug]

Thank you PJ and swimmer.  I'm realizing that, right now, I have a real love-hate thing going on with this site.  I love the camaraderie and encouragement.  On the other hand, not having started tx yet, I hate hearing what most of you have been through or are currently going through.  I hate it for you and for myself.  And if I'm completely honest, I'm more frightened at what lies ahead than anything else.  Until two weeks ago I had been arrogant enough to thumb my nose at all those "lifestyle" diseases that I naively (ignorantly?) believed I had escaped.  I've never really had any major health problems, I've been tested numerous times over the last 25+ years with negative results, and I have believed and lived as though this was a second opportunity to live my life productively, compassionately and fully - to make amends for all the wrongs of the past and not only find forgiveness from those I hurt but also from myself.  As I'm sure you did/are doing at some point, I find myself questioning everything, blaming myself, wondering how I'm going to tell my family and friends who aren't privy to my past indiscretions and what opening those old wounds are going to do to those who are.  Should I lie and say it's cancer and avoid the inevitable judgment?  Should I just not tell and go through everything with only my husband for support?  That doesn't seem fair to him, does it?  Should I just ignore this diagnosis and continue on with life as if it didn't happen?  And so on, and so on.....

I'm not asking for responses to these specific questions.  I am just feeling a need to share right now.  I know what I need to do and will face it as courageously as i am able.  Knowing you all are here is comforting.  I just hope I don't bore you with my inane posts.

[1swimmer]

It seems like we all have these lists of things to do before tx. It can be frustrating, but it is necessary. Good luck with all your pre-treatment procedures.
Take care,
C

[PJ1966]

Good to get all the necessary medical issues/surgeries out of the way before you treat.  I had to have a hysterectomy so I did this before I started.  I also just wanted to deal with treatment and nothing else.  Good luck on your journey.  Everyone here on the forum is so helpful and really helped me sort things out especially at the beginning.  It's nice to know there are knowledgeable ppl out there to help.  And this forum has lots of knowledge to share.  I'm not but as I get more experience with this treatment, I'm learning a lot.  I keep reading the posts also to educate myself.  Sometimes, it just makes me feel better since I need to know that there are more out there that are experiencing more than me so I can be ready if I start having more symptoms.  Good luck and stay positive!

[dooklebug]

Thanks, you two.  I took a little break from the forum for a couple days.  My appt. with my C-R doc had mixed reviews.  Pre-cancerous polyps mean another CT scan next Friday.  He wants to talk to the pathologist before scheduling an appendectomy.  Plus, he wants to coordinate things with my Hepatologist.  So.....I'll know more on Tuesday.  Thanks again.

[Advocate1955]

I think it just takes some time to process all of the information.  You get a lot of information all at once, and then there are just some steps that the hepatologist has to go through before recommending a treatment plan, and it all takes time.  My husband and I went instantly into high gear too.  The process clicked along, but did take some time.  He was diagnosed in March 2007, had the colonoscopy, biopsy, ultrasound, CT scan, vaccines, and genotyping all done by April-May, 2007, and started the first treatment by May-June (the authorizations for the meds and insurance companies takes time too).  Although all of that moved quickly in the world of tests, results, appointments, and insurance companies, it was plenty of time to process information and go through all of the feelings and adjustment period to finding out about a serious illness.  You just do what you have to do for your health.  I, too, am sort of a crisis manager, in that my approach to anxiety about health is to research, take notes, ask questions, etc.  I'm sure it's a way to overcompensate with the fears and anxieties that go with the unknown and health concerns.  It has its benefits:  I learned a lot.  It has its downside:  easy to get overwhelmed when things don't go as we hope.  I try to look for a balance, and then remember that life goes on and find ways to live life even when there is a chronic illness.  It's always day to day and focusing the attitude.
Advocate1955

[Idyllic]

It does sound as if you are in full-tilt boogie mode or better yet: your fight or flight response has been triggered. And understandably so. The minute I decided to grab this disease by the horns I researched, had a biopsy, learned my treatment options and made arrangements to treat. I had my biopsy in December and it took until August of the following year before I could treat.

This was back when there was only duel therapy for Genotype 1. I thought I was frustrated much of the time since I wanted to treat as soon as I had my biopsy results. The time lapse turned out to benefit me.

I think the difference is I knew I had HCV for two years and had time to live with it. To realise it is potentially a life-threatening disease that could possibly be with me for the rest of my life. I soon snapped out of the urge to just get rid of the virus as fast as I could. I guess the point is I know it feels like a crisis right now but I hope you reach a point where you can view it as a life changing event that you can deal with and eventually overcome. I say let yourself have a meltdown if it brings you closer to seeing this is a small part of who you are right now that eventually in some way will be manageable. In truth I think it may just take time.

Take care and keep us posted.
We are all here for you