Down

[gauf]

Feeling kind of down. I am a 2x relapser with cirrhosis. Now, I find out I have steatosis. Losing weight is damn hard. When I think of what is coming (again), and the fact that I can't get a hold of alinia, or get my doc to ok double dosing, I wonder if it's worth it. I mean i don't feel my odds are very good for SVR. I have lately been thinking that maybe it's just the way it is, why NOT me?  Thinking about dying and trying to come to terms with it. Not angry anymore....just starting to accept that maybe I am just supposed to go. Thinking about how long I can last. Spirituality too.  I know some of you must have felt this way... I am not a quiter, but, well some of us just can't win no matter what it seems. Not even looking for advice really, I just can't say what i am feeling to my family as they will not understand.

[Forseegood]

aaaah, Gauf, sorry youre so down today, this all must be so unnerving to you, I know it is for me, and you've been through so much more then I have, but please.....don't lose hope...about 6 months ago I saw a woman I've know since my diagnosis in 01, that has compensated cirrhosis, and has had it for going on 13 years, with hep...she gets problems now and then, but she's really doing okay, taking care of her child, etc....a person can go a long time with cirrhosis, for some reason, I know many that have, a lot here on this board...don't lose hope, easy for me to say I know, but please just give yourself the time to get out of this down spiral, it'll pass...I'll email you about this alinia info I have, take care Gauf...tomorrow is another day huh? thought I'd throw you an old nugget..they work sometimes! lol....be well....

even if the worst happened, and you needed transplant (and I'm in no way predicting that's going to happen, just a hypothetical, look at all the people who are doing fine on those too~)

[goldyn]

You have tried to hard to just slip quietly in the night..your time of healing will come all the new drugs plus if it comes down to it a transplant and that wont probably be for a long while your just a little blue now but you do have the fight in you..you will not slip quietly in the night.. you will beat this ugly virus.........
                                      Blessings to you and your family
                                                       Goldyn

[charm27]

Sorry you are down....its not easy which we all know. I totally agree with what Foreseegood said and Goldyn..its true.

Besides...I think a depression cycle is defintely going around and smacking us in the head.
You will beat this somehow someway and hopefully very soon.

The Best To You

[sfwandwow]

my hubby told me he saw on news that they have found a cure for cirrhoses( cant spell).  he didnt get to catch it all but i thought wow this is great for all people..GOD is using man to heal us..  have a great evening

[Forseegood]

I totally agree with you, as much as I can't stand the summers now (with hot flashes it's a bit too much for we ladies of a certain *maturity* lol....) I think the change of weather has something to do with out outlook...I"ve been really doubling up on the positive reading, mediations lately to help change my mindset, or I'd be a screaming mimi...hope youre well!

Gauf: my sister has been going and going for years now on decompensated cirrhosis....sometimes I think all this info we have deal with stats, etc...it doesn't always apply to us individually, a very small percentage of us kick the bucket with this, very small percentage, relatively speaking...

Goldyn: just wanted to say, nice to see you!

[mremeet]

Not sure what your treatment history is (other than you relapsing twice previously), but why don't you think about taking up the fight again? Like you said, tap into Alinia, elevated doses of riba, elevated doses of IFN, procrit, neupogen, 72 week regimen...the works. And prepare yourself by losing weight before going into it, put yourself in peak fighting form (remembering that low BMI optimizes odds of success). Force yourself to develop a strong sense of purpose with a definitive goal in mind. Focus on what it is you want to accomplish (that being SVR), and think long and hard about every single thing within your power to bring that about. Visualize victory, know that it's within your grasp, understand that it IS possible. And that ain't just some BS pep talk, it REALLY is! Don't go quietly, when it comes to this sort of thing you gotta step up - ya just gotta!!

[susan400]

Gauf,

I know how you feel, but please don't give up!   There will be something down the road...

Susan

[gauf]

Thanks for the encouragement, I am soooo grateful for the forum.

[FlGuy]

I wouldn't be so quick to call yourself a relapser.  If I recall correctly, your first tx ended very early and your second had reduced meds. Correct?  There are many docs who believe that a patient who can get to undetected is a patient that can get to svr.  The trick, I think, is finding a doc and a treatment regimen that can get you to the end (whatever number that is) my managing and pre-managing side effects.  Having tried twice the recipe for the successful tx needs to be different and aggressive with a doc who is willing to push the envelope a little while making sure you can finish what you start.  All is not lost and there's no need to throw in the towel.

[Forseegood]

it always amazes me the facts about posters you have at your fingertips? and you just finished your second treatment? gee....I don't have that kind of memory retention on myself. Hope youre well.

[FlGuy]

I'll tell you the trick, but don't share it with anyone.  I am all these people.  In reality, it's only you and me in this forum.  At least I have nice company.  How's the kid.  Did I read she turned 18?

[Forseegood]

you pulled my covers! I'm a solipsist! (Solipsism (Latin: solus, alone + ipse, self) is the philosophical idea that "My mind is the only thing that I know exists". Solipsism is an epistemological or metaphysical position that knowledge of anything outside the mind is unjustified. The external world and other minds cannot be known and might not exist. In the history of philosophy, solipsism has served as a skeptical hypothesis.) whatever! Maybe alien beings are running each one of our realities, from faraway stars.....if that's the case, pay off my Visa you idiots!!! :)

The 18 year old is fine, she just vacuumed, could knock me over with a feather! She wants to take the whole day off of school tomorrow, to primp up so she can take her senior yearbook pictures tomorrow afternoon. I told her time would be better spent in just studying - to be able to graduate. Lord help me, I've turned into my mother. YIKES!!!!!! Were we worse when we were teenagers? or better? God knows. At least we had the Beatles. Good on you Fldude.

[FlGuy]

Descartes:
I doubt, therefore I think, therefore I am
Foresee in the role of Descartes:
I doubt, therefore I think, therefore I am and am the only one who thinks

[katerika]

Came across this quote I'd like to share


Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

St. Augustine


Keep up the fight!
Teri

[Forseegood]

Beautiful quote. Maybe we cheered up Gauf...hope so anyway...

Flguy: why I oughta...

[charm27]

Awesome quote. Never heard of than one before.
Thanks for sharing  it.

[gauf]

First, thanks all for comments, it really helps. mrmeet, I agree that I need to get aggressive, which is why I went to a good hepatologist. However, he nixed some of the things I want to do, which is why I am in the dumper so to speak. I am dependant on forces beyond my control. I could change docs again I suppose, but took a lot to get this guy to see me. Anyway, my TX history is on my profile. P.S. Augustine rules.  -Geof

[mremeet]

Dude, this is purely my opinion, but I would have a go at it again and real soon. You're still compensated, the window before transplant or death is still very much open. You have to take advantage of that window and do it real soon. If your doctor won't go along with Alinia, and you want to try it (which I would without a moment's hesitation), then go with another doctor. I know of people with cirrhosis right now that are in a similar situation as you, and they've added Alinia to their SOC regimen in hopes it will help them out of their desperate situation (without actually having hard evidence in hand that it will). And remember that Alinia has a very low side effect and toxicity profile, and it's already available RIGHT NOW. All you need is a doctor who knows about it (or is receptive to learning about it) and is willing to prescribe it to you (in addition to SOC). Go with a doctor who's creative and adaptive and will listen to you. A doctor that will let you take higher than normal dosage if you choose to, who will liberally apply procrit, neupogen or whatever you need to keep your doses up. I don't know who your doctor is, but putting a high BMI guy like you on only 800mg of riba in this day and age of weight based riba is a sign he doesn't know what he's doing (unless you have a special problem with anemia/platelets etc that would dictate that). You're in between a rock and a hard place having cirrhosis, but your problem is probably solvable with the drugs that are available right now. Solvable if you get an aggressive doc that will take chances, be creative and be willing to push the envelope. And lucky for you, you have geno 3 instead of geno 1. I'd be willing to bet that if you lost some weight prior to starting, went 48 weeks on SOC (or more if you're up for it), manage to maintain reasonable weight based riba dose adherence, that alone would probably snuff out your virus. Add into that Alinia and maybe elevating your riba and/or IFN for the first weeks of treatment?? I think your chances would be excellent - be thankful you don't have geno 1, that's a real feather in your cap right there, and yet another reason why I definitely think you can put the kibosh on your virus and finally let your liver recuperate back to a stage 3 or perhaps even further given enough time. Stay away from transplant, stay away from ESLD and death - go in the opposite direction! Best of luck whichever path you take.

[gauf]

Yah, I am of the same mind as you on this.  It makes me crazy that these docs won't ok what I want to do! Hell, it's my life ya know? Dr Zein of Cleveland Clinic is highly respected and I am grateful he diagnosed the fatty liver, but he will not prescribe alinia. rrrrrr..... so frustrating.  I can get around the double dosing issue by holding up the start date, but if my wife finds out I'm toast!  She blindly follows the doctors and believes she is looking out for me. Anyway, I have some time left before tx as I have got to lose the weight, (down 10 lbs thus far) so I will keep trying to find a sympathetic doc to help me out.  Glad you're here dude, thanks.

[meki]

I'm coming in here and I'm kicking your butt!!!!

here - have a cup of joe --- or tea...

Now - what's this stuff I'm hearing? You think you can't do what?

Hey now... That's not the way to be thinking...

And each day of life is very precious... I mean --- look outside --- look out your window... What are you seeing? Anything from dirt to grass - to bricks --- to a garden - to a midnight blue sky --- to clouds and rain - snow or old cracked tar...

All of it --- it's amazing... Take a real look at it - not the dreary I've seen it all before --- but a HEY --- check this out kind of look.

And realize that that is how others see YOU.

Now --- if you really want to shake up your life... Put on a thong. That will totally mess you up. Especially if you have hemmorrhoids. I'm telling you what --- that will give you a whole new perspective on life.

Yeah --- you got it bad.

It stinks that you've not cleared yet.

But look at Eric (Andiamo) and Look at NYGirl.

They haven't given up on LIFE --- on LOVE --- and the amazement of both.

And neither should you.

Now go clean your coffee cup out...

LMAO!

Hugs,

Meki

[gauf]

A thong? With hemmorroids? LMAO!  You came back just in time.

[gauf]

btw, When I said "glad you're here", didn't mean that I'm glad you got the dragon!

[wyntre9]

Jeeeezzzzz, gauf.

I've been wanting to post something to you but couldn't think of what to say.

I can only imagine how I'd feel if I were in your position

I know what you mean about wondering how long you can last.  But just putting those words in an email and sharing it with us will hopefully give you the motivation to continue fighting.  When i found out I had hep c and had to start TX the first thing I did was download all sorts of final docs, including a living will, last will, power of attorney . . . boy, did I ever let my imagination go overboard!   Now I couldn't tell you where those docs are.  (of course, i do have the excuse I moved a couple of months ago.

My point is, even though I'm not nearly as bad off as a lot of folk on forum, I still had to go through all this letting go, grieving for my health, my physical self, and coming terms about mortality.  It was painful as h*ll but it sure helped me try to put things in perspective.

Best of luck, Gauf, and keep us posted.  My thoughts are with you.
I am just so sorry to hear your sad news, but don't give up!  not yet!  I have a sneaking suspicion it just ain't your time.  :)

Wyntre

[Forseegood]

not to make light of this, but maybe lightness is needed sometimes...I wish I would of videotaped my writing of my living will after my diagnosis....my housekeeper was helping me divide my things, weeping, I gave her my sewing machines and sewing books (never learned to sew worth a darn anyway)....then.....still weeping, I divided my other things, and told various family, friends, neighbors, what they would be getting, just in case the attorney didn't take care of his business properly...this was years ago now, and some of my neighbors and friends still bring it up, and we have a good laugh over it....I would of been the hammiest actress, I can be SUCH a drama queen!!!! I wonder how many of us made wills? (which is a good thing to do anyway, for everybody, I realize)...vast majority of us are still here, thank God...