slow death without tx

[Bucklaroo]

I recieved a liver transplant 3/11/06.I felt great for 6 months or so then the great felling of a new life slowly stated vanishing. My enzimes were getting high and my Dr said after 1 yr I was already at stage 2. I have hepc-1a, with a viral load of 3 mil.
I started treatment with zolaf 50mg 4 months ago then pegasas ifn and ribo 3 months ago. After 2 1/2 months I was thinking somewhat about suicide. My Dr. told me to stop taking the med and increase my zolaf to 100mg a day. I went in and talked to him and he said there was no other treatment avalable.
So my question is do I risk suicide or do I just sit back and let the hepc kill me???or is there any other options !?

HELP

[willing]

depression is  a common side effect of tx and suicidal ideations are one route that depression can take This was one of my hurdles while doing time, and remains one of the reason I'm so fond of these drugs. I hadn't  dealt with suicide since my teens but  during tx the issue came up hard. When I finally saw a Dr. about getting some ADs she basically advised keeping an eye on the progression from thoughts to actions - as long as I stayed at the "thinking about it" stage, things were stable, but if I found myself physically walking to bridges or going gun-shopping, which I did, raise an alert. Only you  will know what's bearable - but if fibrosis progression is moving that quickly you already know qutting tx isn't a good idea.

This forum helps a lot - stay in touch. One woman in NZ a few years back had near daily posts on her struggles with suicide - people will understand what you're going through and try to help.


PS. One deterrent that worked for me was the high-price of funeral arrangements. Go check out  what a casket costs these days!

[Mr Liver]

Once suicidal ideation is known, it is advised that all therapy must stop. Any doctor who continues to treat a patient who has had admitted suicidal ideation, assumes total liability for any negative outcomes, as treating a patient in this psychological state is extremely contraindicated.That being said,  I'd make the case that I was under-medicated with the dosage of AD that was given. And I think that would be a very reasonable argument to make.  Not everyone derives the same clinical benefit from the same dose. If you were indeed under-medicated with your AD and its dosage, that is hardly the fault of the patient. IFN can be very hard to endure psychologically for anyone who is not receiving full benefit from their AD.

Hasn't your transplant team offered you other possibilities; such as maintenance dosing ? Perhaps they'd be willing to let you try if the dose was reduced and the AD dose raised, or even a wholesale change to a different AD altogether. With no prior history of deep depressive episodes to confound the situation, I'd think that it would be reasonable to at least approach the doc about the possibility that being under-medicated with AD may have been the primary reason for your suicidal ideations. I've seen IFN take a Nat'l Weightlifting Champ to his knees, reduced to a pile of blubbering tears.
(He refused to take AD before tx.). IFN can alter brain chemistry to the point that a low dose of zoloft is not going to work for some people. Talk with your team about it.

I hope a reasonable course of action for you to take will be quickly forthcoming and I wish you all the best on your journey.

Mr Liver

[new-sojourn]

End stage is no fun.....I've started minor bleeds-esophageal-and there are no more options.  I cl'd in 2002-transfused 1967, dx after major near death bleed out on 9-12-2001...b/as they say, the damage was done...

the next major hurtle was replacing and refacing all the dental work and going after deep festering infections--it seems that every knock, bruise, break or twist healed badly b/c of the un dx hep c...

I think healthy living choices and facing the right and place to die choices are sometime in order....

I'm 60, not supposed to be alive....

I decided I have one more move and that I didn't want to die alone or helpless..

I have the option of choosing my final 'retirement' home and I decided to go to a state that has no sales tax and won't tax my 'income' highly, also a state that has death w/dignity law and humane medical marijuana laws...

Also, pain meds and some anti depressants are good,

Just decide how you want to live and how you want to die.....
do everything you can to live now, set small goals-like 6, 12 or 18 mos ahead...

visualize what you want to say and do, show gratitude and reassure those around you that their actions enhance and give meaning to your life..

and then...make plans on how your last few or many years should play out...

if you think suicide and who hasn't, me many times, @          esld--it might be the encephalopathy talking--reduce dairy and red meats-ammonia producing

take walks and realize that the things that matter most are still w/in your grasp--gratitude, love, reassurance and happiness-

don't hurry and let things play out...
who will plan the party/wake, write the obit and pick the pix??

you have alot to do

[geterdone]

How about asking your spirit what is it that you want from me. The thought of suicide requires a lot of energy, energy that could be going to heal the gaping hole that is in your energy field. What are the other reasons out side of the liver problems to bring on the thoughts of suicide? Don’t have to post just think about them and go from there and the road starts to get longer and longer.

[mikesimon]

At my center there is a psychiatrist whose sole responsibility is the treatment of transplant recipients. If your center has a psychiatric support system I would get in touch immediately and explore your options. I recall seeing the psychiatrist post transplant and she asked me if I was depressed. I said that of course I was depressed - I just had a transplant which I thought would cure me and now I am treating the same disease and I feel like ****. She prescribed Wellbutrin but it didn't seem to help much. SSRIs made me crazy hours after I took the first pill so that approach wasn't successful. In the end I just resigned myself to being depressed and got on with treatment. My HCV came back with a vengeance so I didn't feel like I had a choice and neither did my surgeon. What I am saying is that depression in your situation is probably not uncommon and may in a way be an appropriate response to a heartbreaking situation . When you say "After 2 1/2 months I was thinking somewhat about suicide" are you saying that you were seriously considering taking your life? Or were you just thinking something like "man, I would be better off dead - maybe I should just end it" or something along those lines. Vague thoughts like those might be able to controlled with proper medication and counseling and still allow you to continue treatment. But, you absolutely must have a psychiatrist involved regardless of what direction you go and, if you are allowed to treat, the psychiatric involvement must be frequent and continuous throughout your treatment. I urge you to explore what support is available at your center and do it immediately. I wish you an easier road. Good luck, Mike

[willing]

thanks for a great post - I want to remember your words.

If we're lucky enough to have time to face our death, it strikes me there's an opportunity there to see some fundamental truth. It's worth keeping one's eyes open.

So you're moving ? what about  your house in Wash?

[Forseegood]

yes, I ditto Willing, great post...you and so many others like you is why I still continue to come here, to see how people can prevail in the hardest of circumstances, it puts my relatively small problems into perspective for me...thanks for this thread...

Bucklaroo, perhaps with talk treatment, anti-depressants, and your own cognitive psychology exercises and meditation? (you can google it) you can find some peace?...

I'd been diagnosed with depression years ago and I have had to at least do a two to three-prong approach to deal with it properly...

many times just doing one of these therapies isn't enough...and of course, there this the old saw about being proactive, when depressed, "do"!!!

and the irony of when you experience depression, the last thing you want to do is *do*!

I just hope you can find some way out for yourself that works for you, and remember these are just thoughts, and thoughts aren't always in our best interest, you know when thoughts are helpful and when they are not, it's important to keep that distance from thoughts sometimes, so you can have perspective...that's a form of meditation...

....sometimes I just let the thoughts go in and out till they go in a different direction, l try to let them be what they are until they change...I try not to let them have too much power, until they are positive again, then when they start turning positive again, I imbue them with a lot of power, a game I play, many time if i do this long enough, it works, till I get to the next hurdle...peace to you...

[honey11]

Buck,,,I can't say I know how you feel because I don't.....I found out I had hep,,,1A 3 years ago and did treatment and am SVR today.  However,,,Since my time on this board,,,there has been some amazing stories so I would love to see you stick around where lots of people can help,,,,,,Hep alone can cause depression so you are not alone in that thought.  You have much to live for and maybe today is a bad day but there is tomorrow,,,and you realize that life is worth living!  I also encourage you to talk to your dr and see about getting on something for the depression and discuss with him,,,,about new drugs that will be out soon and the maintenace is also a good idea.  I hope all these responses have helped somewhat and you take care and just know that others do care and have open ears!

[cigaso]

Although I have not had a transplant, this tx has brought me to my knees a few times. I find solice in reading the scriptures. Maybe you can too. Psalms and John are two books you may want to start reading.

I am not a doctor. You seem to be getting hit with depression from various areas. Get with your doctors and have them help with getting the depression under control. Then you will be able to see a little more clearly on how to make it through.

There is strength in HIM. God Bless.

[meki]

Hey -- Buck...

Whatever it is --- whatever you think about --- stop yourself...

Tell yourself this:

If whatever it is - is that BAD ---- 1 year AFTER TX... then you can start making your plans.

BUT ---- (Of course you'll make yourself go see a doctor before then... RIGHT?) --- I believe you will find that 6 months after TX things are a WHOLE lot Rosier.

Keep that in mind.

Remember the IFN TX plays with your head. It makes you feel things, think things that shouldn't normally be there.

Keep that litany running through your head: It's the medicine talking... It's the medicine talking.

Keep a journal - read it... Understand that each day is different and that there are things that you may be thinking now that are way out of order.

SUPER HUGS --- and know this: WE ALL UNDERSTAND.... Be strong!

Meki

[susan400]

I have had on/off again issues with depression and the HepC/treatments over the years.  Like Mike Simon, Anti-D's made me feel worse and therefore were not for me.  I don't think that there's anything wrong w/AD's and are great for those people in which they work for.  Anyhow, I found that since I live alone that if I could force myself to get out that I could get past those really bad moments.  Also, I agree, prayer, PSALMS.    Also, for me when I start getting really, really depressed, I have to force myself to move.  I know that this is not possible for everybody, especially when you are sick.  But, when I could, I walked.  Sometimes, all I had to do was go outside, go to the grocery store, video store, mall, anything to get away from my runaway thoughts. And treatment will give you those thoughts.  None of us are guaranteed even 1 day.  Each day that we're here is for a specific reason, even though we don't always see it.  Try to keep on keeping on....

Susan