Trying to stay positive

[offwarranty]

I don't really have a question, just needed to vent a little someplace.  I try very hard to stay positive around my family because it affects them greatly if I don't, so I end up keeping any bad thoughts I have bottled up.

I was diagnosed with HCV in 1998 after donating blood. (scary thought since I had been a regular blood donor prior to that).  I have no idea how I was infected, or how long I had it.  Over then next few years I had three biopsies and did try treatment with non-peg interferon and ribavirin, but did not respond.  My Liver seemd Ok and was only at a bordeline 1-2 fibrosis so I was pretty confident that I was not progressing.  Sad to say I just stopped going to the doctor for several years.

Jump ahead to early this year.  I was diagnosed with thyroid cancer.  Had to have my thyroid removed, had a large tumor removed from my neck, and had a procdure called a radical neck dissection.  Amazingly I stayed very positive and went through that with little side effects or problems.  Was back working in less than a month and felt great.

Bad news was the doctors treating me told me that my bloodwork was indicating possible liver problems.  I went back to my doctors had a bunch of tests and another biopsy.  Doctor said I was at stage 3-4 fibrosis, and talked as if I was in "end stage" liver disease.  The crazy thing is I felt great, excercised every day, am in good shape, worked, played, etc. without any indication that something was wrong.  The only reason they found my thyroid cancer was I had a visible lump on my neck, but other than that I had no other symptoms.

So I just started Pegasys treatment.  I am in week 4.  It really is hitting me hard.  A lot of days I have trouble dragging myslef out of bed at all.  I am trying to stay positive, try to still excercise on the days I can muster up the strength, and I am still working.  I find it tougher every day to keep up the positive attitude.  I know that if I can clear the virus it will be worth it, but as a non-responder to the first treatment my odds are not great.

Even if I do clear it, I am worried that my liver will not recover.  I have a very healthy diet, have been using liver protecting supplements like milk thistle for a few years.  I just hate the thought that this treatment may be just wasting whatever time I might have left.

I am only 49 but worried that if it did come down to it I would be too old to be considered for a transplant.  Organ are already in short supply and I have heard that patients over 50 get moved down the list.  Also as a cancer survivor I am not sure I qualify.

I was really thankful and very positive that I dodged the bullet on my thyroid cancer (although I guess that is still too soon to tell).  It has been undetectable for the past several months so that is really good.

I have had a great life already, and am luckier than most people I know, so I don't want to complain.  I can live with whatever hand I am dealt.  It is just that I am finding it harder to keep that in my head.  Maybe it is just this treatment putting a chink in my armor.  I am usually a lot tougher than this.  

Thanks for listening.  I feel a little better having writtent this.  I hate to whine, and bring anyone else down.  I know everyone here is dealing with a tough time.  Best of luck to everyone.

[GoofyDad]

Great handle! Our cases are not dissimilar - I was diagnosed stage 4 by biopsy, then had thyroid cancer. I treated and that was not fun but I was able to keep working and I acheived SVR. Then they discovered the thyroid cancer so I had that removed. Now, 51, cirrhosis dx, SVR, and thyroidless, I'm doing quite well and no one would  know I was ever sick.    

Take good care - there is a light at the end of the tunnel for you.

[franke566]

welcome to the forum!  I'm glad you found us.  There are some mighty good people here with broad shoulders, big hearts and lots of savvy on the subject I found out.  Best wishes!

[Kathy73]

I agree with so many of the kind posts on here. Welcome and I wish you and your wonderful family the best. I just finished tx a couple of months ago and agree with trying the anti-depressants. They really helped me with the depression and rage. I'm an easy-going type of person who always thinks the glass is half full, but SOC kicked that to the curb. I also agree with taking a B6 and B12 supplement. I've read that Niacin is not good for a cirrotic liver, so I took the B6 and B12 pills separately.

Good luck!
Kathy

[orphanedhawk]

I wasn't diagnosed until I did have decompensated cirrhosis. Looking back on it, I realise I'd had cirrhosis for at least 10 years prior to my diagnosis. Decompensated cirrhosis is end stage liver disease. I treated and relapsed. I think if I'd known sooner it would've worked for me.

You need to vent and this is a great place to do so. However, it helps if you can also do it in other ways. How about keeping a journal just to get all the nastiness out? Or, go in the shower and scream or, whatever works for you.

What helped me the most, was remembering that all the side effects don't last. In other words," I'm depressed but it won't last", and it doesn't.
I surrounded myself with calming images, kept a small book of uplifting thoughts by my bedside, and watched tons of funny movies. I tried to get outside and take a walk  whenever I could. Even just sitting on the deck and watching the birds was eased the depression.

Best of luck,
OH

[offwarranty]

Thanks very much to everyone for all of the support.  It is realy nice to have people who have gone through this to talk with.  I wish everyone the best.

[Kristina538]

Your story sounds similar to mine - I did the non-peg in 1994 and relapsed straight afterwards.  I looked after myself and seemed to be doing okay but was then told in 2008 that I had early cirrhosis; stage 3-4.   I had a lump on my thyroid the year before, which was benign, but needs to be regularly checked.

I've did tx and obtained SVR last year.  It was the most trying and difficult experience with lots of late night prayers to the heavens; tears once a week (about 2 days after shot day), and difficulty doing almost anything.  My doc said that the sx's seem to be harder on those of us with more scarring on our livers.   I also know that the more sx's, the more it seems the the treatment is working.

I printed some of the posts from this site and gave them to my family.   I had to ask my teenager son to please not ask me to make any decisions; that anything my partner agreed to was okay by me (I lost the plot with him early in the tx and realised I couldn't keep up pretences - I loved him too much to hurt him and had to give him and my partner permission to treat me as slightly mentally incapacitated, because I was).

I took to my bed when visitors arrived after the first 5 minutes of being unable to keep up with the conversation (sorry I've got a headache).   TV was hard to watch but I wouldn't miss "Amercian Funniest Home Videos" because the laughter really had a beneficial effect.

I had lots of small healthy meals during the day, rested a lot, walked whenever I could, drank gallons of water and had immense pride when I managed the supermarket shop.  It is a long, long haul.

My partner and son avoided me a lot but were available for me whenever I asked, and that's how I got through.  You will need their protection and their patience - and you need to treat yourself like a patient, and let them know that too.  Some days you may cope... some days you may only cope for half the day, but concentrate on the love, and find yourself a safe place (mine was the bedroom, or the front deck).

I praise you for doing the tx again, and very much hope you have a successful outcome.  My most difficult weeks were week 7-8 when the ribaviron really caused a drop in my hgb;  luckily it stabilised.   The first few months are the hardest when the meds are reaching saturation point.  I read here that B-complex can assist some people with dropping hgb; it seemed to help with me.  Anti-depressants help some people also... and drinking lots of water helps everyone.

Welcome to the site;  it's been a Godsend for me;  I hope you find it the same.

[Vic1967]

I just wanted to say welcome and that you came to a good place.  I also don't like putting my family through any negative stuff and although they are the best and so understanding, they are never going to get it as well as the folks here, going through it together.
I found so much affirmation and comfort here. I really did think I was going crazy and was confused and frustrated when i came here.
I hope you get the encouragement you need from us.  We are all here going through it together and some folks have good wisdom. It is good to hear it from those that have completed it and stay around to help us newbies.
I cried  A LOT around the same time as you.  Be on watch for Rage too.  For me that  was the worst because of my poor family.  They deserve a Medal for Understanding and Patience.
Best of luck to you for successful treatment and a long healthy life!
Vic

[justme53]

Welcome to the forum. You're not alone in needing a place to vent....when no one else can understand, many of us come here for the same reason...that and the top notch info.

Your doc alluding to possible end stage liver disease probably through you into a tailspin..I know it would me. But I just wanted to pop in and say that I have stage 4 liver disease, compensated cirrhosis and my Dr. reiterated yesterday, that IF I reach SVR and IF I keep my weight down and adhere to a healthy diet, that reversal of damage, even for a stage 4 is possible. I've read that in studies before, but she underscored the fact for me and is helping me to stay the course. (48 of 72).

I had my meltdown about 10 weeks in and went on Celexa (10 mg) until a few weeks ago. It really helped me through a rough time. Your Hgb may be taking a tumble too and it would be good, like Isobella pointed out, to get that checked.

Hang in there, Pam

[Isobella]

These drugs can really do a job on you.....especially on your seratonin (sp) levels.  It hit me at week 7....bloods started to tank, crying jags....I was one hot mess (looking back I can laugh...not then tho) I had started on Zoloft before treating because I knew this might happen, but had weaned off thinking I would be ok.  I ended up taking a 1/2 dose and for me that was enough.  

Have you had your hgb checked?  We all start out tougher than this tx, but the reality is...low hgb can kick your butt.  The excercise you have been doing will serve you well, but you may need to adjust the intensity level according to your anemia.  I found the endorphins released were my best friends....even if just from a 1 mile walk.  It can help.

Your "whining" won't bring anyone here down.  We are here to listen to the venting and help ya get through it.  As booocooo says...we can all relate to keeping the game face on for family.  That's why we all come here....because we all "get" it.

My knowledge of liver transplants tells me that in my particular area, the age of 50 would be considered young.  I have seen many liver transplant recipients well into their 60's with various reasons for needing them, including hcv, nash, and alcoholic cirrhosis.

I wish you the best getting through this rough patch.  Not sure of your geno or stats, but in the end...we're all the same.  Just trying to get through this one long day at a time.  It's worth the try to get SVR.  Keep coming here to vent.  We'll help pull (sometimes even drag) you to the finish line.

All the best,

Isobella

PS....Hi Booocooo!!!!!!

[Bill1954]

Hi Booocooo :)

[Bill1954]

Hey—welcome to the group!

I was in a similar position as you several years ago; grade 3, stage 3-4 fibrosis. I ended up doing two treatments for a total of 152 weeks of therapy, but am now done, and am SVR (Sustained Viral Response), or cured.

My understanding is that if the liver is still compensated, that is, still doing its intended job, you’ll be fine if you can clear the virus. The last time I was at the doc for follow up, I was told that I’d successfully avoided the need for transplant. They should know; this was with a large research and transplant center on the west coast. We have folks in here with compensated cirrhosis that have successfully treated, and are expected to make a complete recovery as well.

As far as pushing those over 50 back on the TP list, this is the first I’ve heard of that. UNOS is responsible for developing transplant rules and regs, and I’m unfamiliar with that particular line of thought.

Hang in there, and you’ll get through this. Have you considered adding an antidepressant to the mix? Many doctors insist on this; even to the point of ordering them prophilactically.  As you probably know, interferon has the tendency to cause mood issues, including sever depression in some patients. Don’t think you’re above it somehow… I’ve seen some pretty tough characters practically cut off at the knees from this stuff :o).

Best to you, and let us know how thing go,

Bill

[DD9th]

I had a similar reaction at about week 3-4 of my tx, where I was a blubbering baby, crying all the time, for no apparent reason.  Feeling very sorry for myself, etc.  Which was unlike my usual self.  

This treatment screws with your chemistry, and causes depression.  I would have lost it had my doctor not prescribed some anti-depressents.  Once they kicked in, I felt more balanced, and the crying has stopped.

I hate the thought of having to take anti-depressants, but in this case, I really don't know what I would have done if things kept going the way (mentally) that they were.

So, if you haven't asked your doctor about the depression situation, you might want to consider it.  

Good luck!  And I hope you are able to regain a more positive attitude.  

[booocooo]

Welcome to the forum, I saw you just joined!  I finished Tx a year ago, and luckily was blessed to be cured of the virus.  You have been through so much already, and I completely understand how it feels to "put on a happy face" for others, when deep down you feel a whirlpool of mixed, negative emotions.  

I remember at week 3 breaking down in my sister's living room, thinking about how I had 21 more weeks.  At that point my hemoglobin dropped from 14.5-10 in one week.  I ended up in the hospital a week later.  

I know you didn't have a question, or even necessarily want a response, but please know that you are in the right place, and we are hear to listen, help, and encourage anytime you need it.  Sometimes it's easier to pour your heart out to complete strangers than those closest to you. :)

Tx was hard, mainly from weeks 4-15, but the last part for me, was so much more managable.  It was just hard with those initial side effects, but my body learned to take them a littler "easier" as time went on....

Booo :)