Is there still hope for me?

[2tuxedocats]

I was diagnosed with hepatitis C & cirrhosis about 2 years ago. I went to a hematologist, who put me on pegasys & ribavirin, which I took weekly for about 5 weeks, along with weekly blood tests. On the 5th week, my doctor's office contacted me & told me to stop taking the drugs immediately. Somehow, they were doing more harm than good. Needless to say, that scared the daylights out of me. They said they would adjust the dose, but it took over 2 weeks for them to get back to me, & in the interim, my insurance changed at work & i could no longer afford the meds. I also, unfortunately & stupidly, started drinking with friends on the weekends, something I had quit doing alltogether for over a month. Now, 2 years later, I had to take myself to the ER almost 5 weeks ago because I was vomiting alot of blood. They had me in the ICU for 2 days & I had 2 transfusions & bag after bag of sodium chloride & some other meds I'd never heard of. My hematologist came to see me (he's on staff there) & did an upper & lower GI & found I have esophogial varices. Upon my release, i went to see my primary doc, who did a complete blood workup. Most of the results, he said, were pretty good, considering...but, he found my amonia levels too high & my viamin D count is in the basement. He has prescribed Lactulose syrup for the amonia problem, 30 ml 2x daily. My hematologist is booked solid for the next month, so I won't see him for another 4 weeks. My questions are, is there something I can do dietarywise to help, & will my hematologist let me give the pegasys one more try? I'm not giving up on me & I hope he won't, either. I quit drinking 5 weeks ago, & don't miss it at all. Those days are over! I don't have to kicked in the head anymore to realize WANT TO LIVE!!  Is there hope?

[Rosebud41]

As long as you're still breathing there's hope.

I don't what your belief system is but don't focus on the size of your
problem, focus on the size of your God or whatever your belief...

There is always hope for healing as long as you're alive and insurance companies still exist.  God Bless

Rosebud41

[GrandOak]

Bill is correct on my use of NP and the advantage of seeing them, especially in a situation as yours where the doc is highly sought and pinched for time on his schedule.

My NP actually has spearheaded a program to host quartely lectures for patients with liver issues to discuss a variety of topics, this months is on of the top transplant docotrs discussing the Transplant process and the Evalutaion Process.  Others have ranged from diet to talking with transplant recipients.

We are fortunate to have two top notched doctors (Dr. John "Jack" Lake and Dr. Coleman Smith) to treat HCV and most patients wind up working primarily through their NP's for the same scheduling reasons Bill gave.  I trade off every 6 months between my NP and my doctor for routine exams and annual tests.

In fact, I was due to see my doctor, Dr Lake, next month but am finding my appointment being bounced around as well due to scheduling conflicts.  As the deparment head of the transplant clinic at the U of MN research hospital, his time is in high demand.  But being a pioneer in the HCV TX and now working more closely with Dr. Smith who is very active in current HCV studies, I feel very fortunate to have such good care available to me.

But they are still all limited in what they can do because this virus is such a nasty little bugger and we all do respond differently to it and the TX for it, which makes it so difficult to treat as no one can predict either.

At any rate, wish you well on your upcoming visit and hopefully you are getting some good advice on things to bring up to improve yourself and your level of hope for the future.

[Bill1954]

NP is short for Nurse Practitioner; they typically stand in for the doctor, and are licensed to prescribe meds, etc. I would actually prefer to see the NP’s over the docs; they tend to have more time to spend with the patient; at least that’s been my experience.
Good luck with the appointment on the 12th; be sure to let us know the outcome. Be well—

Bill

[2tuxedocats]

Hot off the presses! My heptologist's office called today & had a cancellation. I am now going on Monday the 12th, so I will have more info alot sooner.Wish me luck! Also, in response to GrandOak, no, he did not discuss banding with me yet. I didn't get to see him before my release. I'm sure that's one of the things that will be discussed at my appointment, & I will also get my MELD score. What does NP stand for? I'm not familiar. I try to keep in mind that he is one of the top hepatologists in the state & is booked solid well into the future most of the time. I did have scans performed in '06, when I was first diagnosed. Perhaps new ones will be ordered on Monday, we'll find out. I plan on asking many questions & taking a much more pro-active role in my care this time around. I'm afraid I may not have realized the gravity of the situation back then. My brother was diagnosed about a year before me, was on pegasys therapy for almost a year, & in the end, came through with flying colors & excellent results, except the meds made him very ill. I suppose that would snap most people around rather smartly, but I had no problems at all. No nausea, no headaches, nothing! I dunno....maybe I'm just a rockhead. But this a brand new day, so whatever it takes, I will gladly do! Will let you folks know what happens on Monday. Blessings & good wishes to all!

[Bill1954]

HI there,

Scroll to the top of the page, and look for the 'inbox', near the top right hand side; I left a message in there for you.

Bill

[Magnum]

My Hepatologist has two patients with prolonged Cirrhosis. One has had it for 14 years, one for 31 years and they are still alive. The fact that they take care of themselves and don't drink, eat right and keep their weight down has led to their longevity. Ask your doctor about banding your verices, as I’ve had mine done. Also, see if you can be a candidate for the upcoming Protease Inhibitors due for release next year (hopefully)...

Magnum

[GrandOak]

A 2 week response to adjust dosage does not sound responsible to me.  I would consider locating a different specialist!!

You mention that you had a Endoscopy which showed varices, what level did they rate them?

If they are 2 or greater, banding is often strongly recommended to prevent internal bleeding.  Internal bleeding will also increase your amonia levels, as will high red meat diets.  With portal hypertension, esophageal varices are common as the liver is not allowing normal blood flow and this area is closest to the liver so exhibits the results of the back pressure from decreased flow.

Did you doctor discuss banding at all when he did the Endoscopy?

You may want to research more on Hepatic Encephalopathy (see http://en.wikipedia.org/wiki/Hepatic_encephalopathy) as it often seems to be related to increase amonia levels.  As I have talked with many folks who have gone through this, it is something you do not want to take litely as it often results in actions for which you have no recollection.

All in all, I am quite surprised that you have not had a CT Scan or MRI performed.  

Doesn't your doctor have a NP you can see?

Has anyone done a workup to determine your MELD score?

If your liver is indeed decompensating, you want to stay closely on top of things to get on a transplant list ASAP, but this will involve more testing and monitoring that it seems that you've relayed as receiving so far.

Quite frankly, from all you've conveyed, I fall back to my initial gut feeling that you may want to strongly consider finding another doctor who will be more responsive to your situation, preferably one who specializes on liver diseases!!

There certainly is hope if you find the proper doctor to adminster care to your condition.  Annual CT scans, AFP tests, Bone density scans, Endocosopies, CBC for MELD calculation, etc. are all part of the monitoring process.  If  you are not receiving these, then I would say you are not getting proper care.

If no one has talked to you about drinking with HCV, let alone Stage 4 liver damage, is like pouring gas on a fire, then you are not receiving proper care.

Hope and faith are fine, but without corresponding action to find and receive proper care and lifestyle changes to adjust to your condition will eventually lead one place!

[2tuxedocats]

Hi all! Just wanted to say thanx to all of your responses. I feel better just knowing there's non-judgemental folks out there going through the same thing. I really don't have anything new  healthwise to report, but I have appointments on the 27th & 30th of this month with both my hepatologist & my primary. Will know more then; I'll keep you posted. It's been almost 6 weeks now since that nasty bleeding episode; have been taking my meds religiously & NO ALCHOHOL!! (actually I don't miss it at all!) By the way, I was looking at my original post & mistakenly said I had to take the Lactulose 2x a day; it's actually only once a day. (can we all say "clean as a whistle")? :-) I've needed to make some serious life changes lately, and I have found a lovely new apartment I hope to move into by the 1st of November. My doc will be very pleased, 'cuz he knows I've needed a brand new environment & we both believe it helps somewhat with the healing process. So there is much to do & little time to do it. Will send updates as soon as I have any.  Regards & best wishes to all of you out there! I'm so glad I found this site!!

[katzilla]

I am also in stage 4...like others have said  NO ALCOHOL!!  I am lactose intolenent due to this condition, so I eat living yogurt added with fresh fruits.  Watch your protein counts and iron....your liver has trouble now....nothing canned, no preservatives.  If you want I have somewhere a diet that was given to me.  I do cheat once a week...picking the food or drink (non-alcoholic)that I want and take extra Lactose!!!

never give up!
Hugs
Kat

[Duke3d]

You might also want to join the Janus and friends forum and present your info. I think someone there can refer you to another group whose members are mainly those with your type of speciic issues.  I believe seeing that happen in response to some one elses similar post.

Gail

[2tuxedocats]

Hi again! Yeah, I'm a Buckeye! Go Bucks! Go Bengals! What part of town did you live/work in? Actually, the one good thing I have going for me is that my brain is functioning just fine. Even through that horrible bleeding episode, I never lost my lucidity (or my sense of humor :-). i work for a very busy courier company, never miss a day, except in an emergency, & my boss, who has been extremely supportive, says I'm more like the old Meghan she hired 10 years ago. And that's just in the last 5 weeks! My primary doc is a great guy who will do everything in his power to keep me on this planet. He says a lesser human would not have survived, but he knows I'm just a tough old broad! :-)  I am very blessed to have these folks in my corner, & I know it! Thank you for referring me to Janis & Friends. I will look into that this evening. Please, contact me anytime!  It's nice to have someone whose been through this to talk to. Best regards!

[Bill1954]

Ah… a Buckeye gal; I lived and worked in the Columbus area for a few years.

They are very careful regarding treatment with patients that are experiencing decompensation; you’ll have to talk with a doctor about this. I thought is wasn’t done; but someone posted a study a few weeks ago, and they were having a little bit of luck with this.

Hopefully, they were able to successfully band the large varicies you had five weeks ago; this can be very serious, you’re lucky that you survived that ordeal. Hopefully, the Lactulose will keep you thinking straight; do you have anyone that can keep an eye on you and help you remain compliant with the meds?

If you get a chance, read through this section of Janis and Friends:

http://janis7hepc.com/Cirrhosis.htm

Particularly any sections on management and care; it might be of help to you. Others will hopefully chime in with their experiences later; this place is quiet on the weekends. Best of luck to you, and let us know how things go—

Bill

[2tuxedocats]

ArthursMom, thank you so much for your words of kindness & support. I was afraid no one would talk to me, being as I pretty much brought this on myself. I get really scared. I have furbabies to take care of & want to be around for a long time. Any advice and support is greatly appreciated!

[2tuxedocats]

Hi, Bill. Thanks for your response. I'm praying I'm not too far of a goner that all that's left is a transplant. They don't put folks like me real high on the list. I'm right now watching a good friend of mine die right before my very eyes. He has hep B & cirrhosis, but refuses to quit drinking. I've told him if he sticks with me, we could do this together, but I think he's just totally given up. I"m not going that route. If you think of anything else I can do to slow this down, please don't hesitate to let me know. I appreciate all help. Thanks, again!

[2tuxedocats]

Thank you very much for the advice.  I'm grateful anyone would even reply to me. I will be eating alot more beans. :-) Are green better than white, or does it matter? Also, I've gone from 198#  to 162# in the last 6 months (I'm 5' 4"). Everyone says I'm looking 100% better than even a month ago. I will look into the diabetes diet. Thanks, again!

[ArthursMom]

Is there hope?  You betcha!!!  And you've come to the right forum.  The experience and compassion here is the best! Read and learn all you can.  You can get thru this.

[Bill1954]

As long as you’re not wearing a toe tag, there’s hope.  Ditto what Joseph66 says; for the short term, eliminate the red meat and animal proteins, and remember your last drink… you won’t be doing that anymore, if you want to live. For the short term get your proteins form legumes (beans, lentils, etc,). The animal protein intake will be re-evaluated by your doctor later.

It sounds from your post as if you may be in end stage liver disease; you’re live is no longer doing what it’s intended to do. You will need to work closely with your doctors from now on, and be sure to be compliant with any orders they issue.

You should meet with your primary care physician ASPAP, and have him help manage this until you can be seen by your hepatologist, Go the ER if you need any assistance in the mean time.

If your liver is decompensating, it isn’t likely you will be a candidate for further antiviral therapy; it’s more likely you will eventually require a transplant. This needs to be evaluated by a transplant center; your hepatologist should make the referral for this. If this is the case, you’ll have to demonstrate at minimum six months sobriety before they will consider you; keep this in mind if you decide to drink again.

Good luck, and don’t let any of this slide--

Bill

[Joseph66]

Youbetcha your diet can bring you great relief
-no booze
-bring your weight down to normal asap if you are at all overweight
-very little red meat-and if then a small portion
-same with nuts
-lotsa water

I recoment the American Diabetis Assoc diets
food can still be wonderful