Help poor prognosis???

[CaliforniaWife]

I'll start with our story.
My Hubby was DX 22 years ago with Hep C .9 years ago he had an acute attack that put him in the hospital his dr gave him 10-12 more years on his liver.He didnt get sick very much at all for the next 5 years then he had a relapse so they treated him with interferon after 6 months of treatment they stopped it do to his platlet count dropping & iron overload.At that time his Hep C was undetectable within one month of stopping treatment his viral load climbed sky high & he found out he had developed fatty liver in the last 4 years hes been sick maybe 5-6 xs a year well that all changed 4 months ago he started sleeping non stop he has slured speach off and on headaches nausea vomiting severe liver pain & his mucles are wasting. so far his tests theyve ran have shown a grossly enlarged liver, enlarged spleen, acites (ascites),Iron overload, Fatty liver,His Hep C is back we went to the ER a week ago he was in so much pain he was turning purple & crying vomiting you name it.. The Dr said his Hepatitis is Exacerbating & that hes only going to get worse  & his sodium level is very low so he cant drink water only gatoraid in small amounts often. they also told him no red meats or green veggies. she said each attack of pain is going to get worse then the last. what does all this mean im scared hes scared he asked her if he was going to die & she said yes that this is irrreversable and that hes only going to get worse but they can't say how long he has left. Why cant they give us a time frame so we can be prepared. The nurse did tell me to get a power of attorney. please anyone ever heard of a situation like this oh to reasons i have no clue hes not a candidate for a  liver transplant.. Is he so sick because he has several factors of liver disease? Im just having a hard time believing hes going to die if his prognosis is that then I want to stop denying it & be ready I cant even Cry Im so Numb.... Please someone Help?????

[mikesimon]

[mkeela]

Your story touched me so. I am so sorry for all you are going through. I am not the one to ask your questions to, but someone will come along soon to help you I hope. I would definately get a second opinion if you can. Please hang in there and know someone out here will be saying a prayer for you.  -Mkeela

[Upbeat]

Some of this dosen't make since.  First they did not have a test to DX hep c 22 years ago.  Acute is the first stage of hep c, Cronic after that.  You don't have acute attack 9 years later.  9 years ago they give him 10-12 years to live?  No one can make that determination.  I suggest you do further research and even getother doctor opinions.
                                                                                                         Ron

[mikesimon]

I would get in touch with another hepatologist if the current one rules out a liver transplant. Google transplant centers in California to locate one close to you and call and discuss your situation with the center. Sometimes you have to push really hard to get answers and the correct treatment. Don't be timid about this - you have a right to know what is going on and believe me, it can be explained in such a way  that you can understand it. You just have to really push and I know when all this is weighing on you it isn't an easy thing to do but do it anyway. Get another opinion from a hepatologist and get in touch with a transplant center nearby. Good luck, Mike

[CaliforniaWife]

Im Sorry I reread what I wrote I meant They Traced His Hep C to a transfusion 22 yrs ago..His Dr says you can have an acute attack from a new source of liver disease which she thinks is the Iron Overload.  This is why Im so confused the Drs dont make sense to me either  how can he have 3 differant liver diseases?? hopfully We will get some answers soon.he has an appnt wednesday & im going to throw a fit tell they explain to me whats happening..If she doesnt give me clear answers im taking him to ucla..

[debnevada]

Try Gish at california pacific. He will read an email if you contact him via his email address on the website.

Robert Gish, MD, is Medical Director of the Liver Disease Management & Transplant Program at California Pacific. He directs numerous immunosuppressive drug trials including studies on PEG interferon and lamivudine for viral hepatitis. Dr. Gish has published more than 100 original articles, reviews, abstracts and book chapters regarding all aspects of liver disease and transplantation and is a widely requested speaker both nationally and internationally. He is heavily involved in community education symposiums regarding hepatitis and has established more than 20 community outreach clinics throughout Northern California and Nevada to work with referring physicians and liver disease patients in their local communities. Phone: [phone].

I emailed him when i couldn't get the help for my acute hepatitis from local GIs who didn't know squat about it.

Give it a try.  This is serious.

Do you know his MELD score?
If you have any of his lab information you should be able to use one of the calculators of MELD. Pull out his labs and go from there.

Deb

[suzieq2]

Good God, What are they doing to you and your husband.They make no sence! When I was first diagnosed, it was because of phnuemonia,and then the removal of my gallbladder, which is common. I agree ,I do not think you continue to have acute episodes of hcv.Your Drs. sound like the know nothing Gatsroenterologists I first saw. There has to be something else going on making your husband so sick,unless he is in liver failure,then he would be jaundice, very bloated, unable to breath because of the excess fluid build up. I am a 54 yrs old and have had this disease for about 30 yrs. treatment did not work for me.I went to a hepatologist at the texas liver center at the university of Texas.I have very high iron levels,But it is my serum feretin and the hepatitis causes that and is of no concern. If He has iron overload in his liver that is a different story. They did a dna test on me  at the begining to rule out Hemochromotosis. then they should do be doing blood letting to lower his levels be fore treatment and now if he has this. I was very worried about my high iron levels, until I had good hepatologist explain the difference to me.I have chronic hcv because treatment didn't work.and I won't do it again until they come up with a sure cure. The only way to know what is going on with your husbands liver is a biopsy. Has he had one? and what was the stage of fibrosous . I know I was very sick whith my Gallbladder, that was only a ultrasound to find the stones.Like I said if your husband was in end liver stage he would have those symptoms and why is he not a candidate for transplant? I hope you are seing a hepatologist and not a Gastroenterologist.there should be a california liver center. If you cannot get an appointment asap with run to their emergency room. of the Liver center. They will find out what is wrong.Good luck and my prayers are with you.

[Alady1620]

I don't understand why he is not a candidate for a liver transplant.

I am sorry.  I will pray for you and your family.

[orphanedhawk]

Debnevada is right. Call Gish. The only reason I know of someone being refused a transplant is if they have no insurance or if there simply isn't a liver available.
  Something is wrong here and I don't know if you are pulling our leg or getting terrible care.
   We are patients not doctors. Call the Gish group NOW!!!!

[ksk3926]

I am so sorry that you are going through this. I am not familiar with Gish, but I do think that a transplant center is where you should start. I also want to give you the number for Dr. Donovan at USC. I treated successfully with Dr. Donovan and he explains everything and even drew me several pictures. The nurse there is Susna Lewis and she is an absolute gem. Their number is 323-442-6171.
Kathy

[meki]

Much good hopes for your husband and strength for you throughout all of this.

[livindabest]

      Since it seems you are in L.A. area. .. sounds like you will get good answers, and care with the  U.S.C. Doctor  and your own Idea is good too, UCLA
  Med. Center is top of the line.
                  hang in there,
                                     Aloha, R.

[CaliforniaWife]

thank you all for your resposes .He has an appnt today .He was a level 4 on biopsy 3 years ago. & yes he does have hemochromotosis hes seeing a blood dr that dr says hes wating for an ok from the liver dr to start blood letting.it all confuses me .yes im in kern county so la is about an hour from here.Im going to ask for a copy of his labs today..

[mkeela]

I'm so glad you got some responses. Please keep us posted on what the Dr.s say...and just out of curiosity, what's this about not bieng eligible for a transplant? If you can, would you clarify concerning the transplant issue?? Prayers are yours again today. Blessings to you and yours.     -Mkeela

[CaliforniaWife]

He went to the dr yesturday I got some more clear answers. She says all of his tests point to him having advanced liver disease & he may have some decompensation. He has Hemochromotosis & believes that is the cause of his liver disease advancing faster. Shes doing a Biopsy next tuesday his next dr appnt is on the 23 so HOPFULLY we will finally find out how ADVANCED it is..  As far as Liver transplant this DR doesnt refer for a liver transplant Until total decompinsation has occured & hes has end stage liver failure. She says because even thow he may be in liver failure he could have another 5 yrs before end stage & if they put him on that operating table he could die from a number of factors when he may have had another 5 years. After his biopsy results we are changing drs...

[mikesimon]

I think a new hepatologist and contact and discussion with a transplant center would be a wise move. Good luck, Mike

[mkeela]

Thanks for letting us know. Please keep us posted as to what you find out.
                                                                                -Mkeela

[suzieq2]

Iam glad to hear you are getting some answers.Remember ,your Dr.works for you.I have seen people in end stage liver disease and things can change quickly.Iwould not wait to get him tothe UCLA liver center. Why aren't they starting the blood letting know! Iron is like a vitamin for for hcv. Make lists of questions you have for the Dr. you will forget. Your husband should be on a transplant list now! And also a biopsy is only as good as the person doing the procedure. If he has end stage liver disease I would say hcv is not the main disease at this point, If it where my Husband ,like I said hewould be at the lver cebter emergency room, demanding the best Hepatologist, Transplant Dr.on staff.Look on the internet to see who that Dr.is.Prayers are with you.If your husband is that sick,he should be in the hosital.

[ShoshanaPNW]

Keep at it. My father was denied transplant by one center because they considered him a poor risk, but another center agreed to treat him. He lived several more years after the transplant, and that was more than a decade ago, when the technology was worse.

[CaliforniaWife]

THANK YOU ALL....As soon as we get the biopsy results I found a heptologist at the hospital here in town.. his dr is a gastronologist which maybe isnt good enough for him..tommorrow is the biopsy..

[daisy may]

I don't have the answers you need but wanted to let you know there is one more person out here thinking of you and wishing you good luck.It must be so hard but try to take care of yourself too.

[Alady1620]

I would not accept what that doctor said about the transplant.  Please get a second opinion.

Best wishes to you and your husband.

[CaliforniaWife]

we go to the dr at 2:00 today I'll let you all no...

[CaliforniaWife]

Also the dr mentioned that he doesnt ever need anymore biopsys she says grade four is cirrhosis & stage 4 means how much inflamation (inflammation) she said they clinically dx decompinsation by liver related complications enlarged spleen diabeties, constipation, kidney infections,acities, and confusion ect ect.. his spleen is 18 cm he has liver related diabeties, kidney infections ,mixed constipation ,vascular spiders, high blood pressure portal hypertension,& mild confusion & mild jaundice with mild acities.

[CaliforniaWife]

The biopsy showed 4/4 Cirrhosis his dr is running a scan to check the biliary branches going from the liver to the gallbladder to see how narrowed they are he wants to take his gallbladder out if there to narrow All they can say is right now its the waiting game once he starts vomiting blood there putting him on the list he doesnt have varces yet in his esophogus once he gets that or kidney failure they'll put him on the list. He is decominsating but not enough yet to do a transplant. Im concerned & am getting a second opinion I think he should be on the list at least right now.on top of all that we found out he has severe sleep apnea with 81 events an hour so they want to remove sections of his throat hes only 42.. IM still In shock I really didnt want to exept this but how can I not it was confirmed by biopsy..How long can he decompinsate can this part go on for years??? any storys out there

[Valeka]

And on the other hand it can and not to mountain at all.
In Russia not that a liver do not replace that, but also do not treat due to the insurance.
Sorry for my poor english

I live [url=http://www.hcv.communityhost.ru/]her[/url]

[mikesimon]

I was transplanted in 2000 and have been around this stuff since 1995. I never heard anything like what you report your doctor told you. The fact that they want to wait for bleeding or renal failure strikes  me as insane prerequisites for listing for transplantation - there is a MELD scoring system which is a formula which uses bilirubin, creatinine and INR (clotting time) to determine the need for transplant. I am in disbelief to be  very honest with you. I would see a transplant center and find out what they think about your husband's situation before I would allow anything to be done by his current doctor(s). I would at the very least get another opinion as fast as possible if I were in your situation. I wish you luck and strength. Mike

[Xhrles]

Your husband sounds like his case is beyond the skills of the local doctors that you are seeing. I lived on the Central Coast and you just don't find the best specialist in small towns.I didn't get diagnosed until we moved to San Diego. Suggest you get referred to a doctor at one of the liver transplant centers. UCLA UCSF UCSD are all good. Dr Hassanein of UCSD is my personal favorite.

[CaliforniaWife]

I called UCLA today they told me his liver dr has to refer him... so I called his old dr & made an appnt for 8/1 the nurse told me his current dr shouldve had him sent to a transplant center that waiting isnt right....

[Xhrles]

That's about the best you can do at this point. Hope they can help him. Good luck

[Kalio1]

Your proactive stance towards your husband's health seems to be working well already!
You are getting info and help and it seems to be helping to make you feel stronger. I hope you are proud of yourself, it takes guts to go through what you are going through, dealing with finding out his situation then trying to deal with "crash course"of learning all about liver disease complications, care, etc. You have a lot to deal with, I wish you all the power and courage you need. Your Hubby is so lucky to have you there advocating for him. Im sure he doesn't feel up to the task.
Im so glad you are on the path towards the transplant list should it come to that.You want all that in place should you need it.  I was told the same things as you, that the determination comes from the symptoms from the decompensation he has or will develop as far as WHEN you begin to move forward on that issue. In the mean time, I would suggest you try not to look at it in terms of time frames, how long until this or that happens because you just never know. He is young, that is a big factor on his side. I don't know the who scenario, but if he does do treatment, that might serve to help some of his symptoms ( even while causing others) my treatment really helped a LOT of issues I was having in spite of the symptoms caused by the drugs. Each person is different, don't look at those charts that give life spans, they just scare you and they are useless, each person has their OWN STORY. To me those charts only promote fear.
The best he can do aside from all the steps the doctor recommends is take the best care of what he eats and trying to stay fit in spite of his lack of energy caused by his liver damage. Our bodies are amazing, you'd be suprised to know that even with cirrhosis people CAN AND DO improve. You are taking all the right steps in case of a less optimal scenario, but in the mean time eliminating all foods that are hard on his liver and living a liver friendly lifestyle might help him feel better and heal. Diet becomes extremely important in folks with chronic illness, there is a lot of info about liver friendly diets and you can discuss it with his docs. Often docs aren't too up on nutrition, so keep that in mind. Lots of info. on care of cirrhotics iin general and on diets in particular is available on the net. I find HCVAdvocate has some good info, but there are many other sources too. Malnutrition and bacterial infections are the bain of cirrhosis patients, so encouraging his immune system with the best foods that are within his "OK foods" range are important. It is very important that he eats and eats regularly! Often with cirrhosis you have no appetite but he must eat small, regular healthful meals. I would want to have him on a "superfood" as he is restricted from fresh veggies as his liver can't take it, maybe a superfood nutritional supplement would be good for him but be sure to check with his doctor. That way he can get the nutrients from veggies but they are in a powder form so his liver is not having to process it like whole green veggies.They are great in a smoothie of frozen berries, yogurt and soy milk, add the superfood powder and he can drink it. It is appealing even with no appetite and loaded with nutrients. If his doc says its OK, I'd recommend the ALIVE brand as it is affordable and very complete, there are lots of brands available out there, another one made by Jarrow called Green Defense amongst others.  You can order it online and it's shipped to your door. That way he gets his nutritional needs met which is vital to healing and to improving his immune system. Those of us with substantial liver damage have to be totally on top of our diets.
If he can keep up a regular form of exercise, like daily walking can be a big help too.Both of those things helped me to feel better and have more energy, even on treatment.If it does turn out he needs a transplant, he wants to be in the best health he can and focusing on his nutrition might help.

I wish you and your husband all the best in fighting this.

[jmjm530]

Hepatitis C and its complications are very misunderstood even within the medical profession. The apparent bad advice and care you husband has been getting is an example. Don't focus at what your old doctors have told you but look ahead to your appointment at the UCLA transplant center as a new beginning.

All the best,

-- Jim

[CaliforniaWife]

THANK YOU all your all a great help & encouragment...

[mikesimon]

Good luck, Mike

[CaliforniaWife]

Just an update He finally is being sent to UCLA For a transplant consultation Since I was last on here he has developed Ascites they put him on ALDACTONE 50 mg .He has also found out he has diabetic Nuroapathy which has been causing severe pain so they put him on morphine 30 mg every 6 hrs He didnt want it but the dr said it was a must because vicodan is just too hard on his liver. His Creatine & Bun are starting to rise so there keeping a close Eye on his kidney function.. The dr says he HAS TOO LOOSE 50 PNDS so far hes lost 16 pnds the dr said with his diabeties thats the only way he may get a transplant if he can loose some weight & get it under control...I'll keep you all updated.. Were still waiting for UCLA to call with the Appnt.. My prayers are with you all...

[mikesimon]

Thanks for the update. Good luck, Mike

[Xhrles]

I'll keep you in my prayers as well. Good luck to both of you.

[Becky D]

We are not a statistic or a number so don't fall in that trap. Get the best Drs. and go for the gusto. I was given a 1% chance of survival 4 yrs. ago from Pancreatic Ca. Only 3 % make it to 5 yrs. But I don't care about that. I choose life and am willing to fight hard for the victory. I want my test to become testimonies. Not statistics. Drs. hold facts and God holds truth. Keep that in mind. I am 47 so I was only 42 when blindsided by the Ca. and then last yr I was told I was hep c positve. Tx. was not an option at that time due to my physical, mental and emotional state. I was told that becuz of the Ca/chemo/other drugs that my liver had been damged pretty bad. I'm at stage 3 in liver dz.according to fibrosure blood test and have refused liver bx. Not interested in seeing anymore numbers. Just got my phone call earlier and will begin hep tx. tomm. The race is on. Was told that there is a chance that tx will open up a big can of worms with the ca. Possibly bring me out of remission but its a chance I'm willing to take. Life's a trade-off... One thing I will say is that I absolutely disagree with the use of morphine ( talk about hallucinations and a lucid state of mind) and other narcotics as they disable your mind for battle and your body suffers as a result. I understand severe pain and I'm not a big fan of it but I've been sick for 5 yrs. Diagnosed for 4 and have known about hep for 1 yr. Was put on hospice 3 times and they nearly killed me with the morphine, methodone, other narcotics, sleeping pills, Xanax(bad one) and it wasn't until after I fired Drs.(you can do that , you know?) and hospice that I got my will to live back. Thats a big part of the battle... You gotta have the will to live, become a survivor and beat all the odds. My ca has come out of remission twice since the chemo and I've refused any further tx for that and I just keep going bacjk into remission without their drugs.... It's God, no doubt. Please reconsider the  morphine. It will kill you faster than the dz. See a pain specialist. He can direct you. Learn techniques of meditation. It really does work. As a ca survivor and a retired Physician Asst., I've seen how fast people go downhill after beginning those meds. At first, the dose seems harmless then it is raised and before too long your not in touch with reality at all............... I think the drug is great for those who have chosen not to fight and require palitive therapy but if your husband had chose to live and plans on fighting for his life he's gonna have to deal with some pain in order to receive the optimal results. Again, a pain specialist would be awesome and should have been the Drs. first choice. Not hepatotoxic and severe mind altering narcotics. It is a personally choice but I believe that if you choose LIFE then you must take every necessary step to help yourself possible, Some Drs. are great at medicating. I call it Comfortably Numb. "If you can't feel it then its all better"
Not true. I would rather feel it and know what is happening in and with my body than to remain in the "Confortably numb" state. Just a thought. Its ya'lls decision. I also agree with above concerning the importance of a liver/body healthy diet. It really hepls you to feel better. He is gonna need to force himself to walk a little eachday or atleast every other day. He will notice improvement in his mental and physical health. Last, is he on Lactulose???????? VERY important med. I am definately an advocate for that. Have done a lot of homework on that and its imperative to keep system cleaned out. Very liver friendly and a must in my book. Will help to alliviate some of the more severe effects of liver dz. My brother-in-law has end stage liver dz and when he doesn't take enough lactulose he gets really bad. Sx like you decribed above with slurred speech, etc........ Talk to your Drs. about it. Get good ones cuz they are in fact, working for you. I don't know about you but when I hire someone to do a job I pick the cream of the crop.... Good luck and my prayers are with ya'll.....

[mikesimon]

I wrecked my motorcycle and was on Oxycontin and Oxycodone  for 2 months for pain. Then under my doctor's supervision I weened myself off of both in one week. Narcotics can be of great help and aren't always used by those "who have chosen not to fight" and I believe it is irresponsible and arrogant to make such a blanket statement. You don't  know what this man is going through so don't presume that you do or that you know what is the right medical approach for him. Mike

[Becky D]

Ouch. Didn't mean to offend anyone. I know that meds are necessary sometimes but I also know that alot of drs out here just try and numb the pain rather than deal with the real issues and the pts. feelings. Believe me, I know pain. Have experienced a great deal with the ca, chemo and multiple major surgeries during this time. I don't presume to know how anybody feels but as a person, pt and Physician Asst. I do know traps that we can get caught in and how difficult they are to get out of. When they had me all dope up and presumed terminal I nearly died from their meds. They didn't take responsibility for their actions and I'll go you one better. They turned their backs and walked away like nothing had ever happened. They still won't look me in the facebecuz they know they were wrong and they know that I know their wrong. True, not all Docs are the same but one does need to be informed in order to make a healthy decision. I checked into rehab myself and took the responsibilty of clearing my head and body of their negligence so I could live again. Don't be so quick to judge me. I'm not a harsh, cruel or imcompaaionate person but I am educated as a healthcare professional and certainly as a pt. and know that when alot of narcotics are involved people tend to go downhill. My advice is to use them wisely and realize that feeling pain can often be a good thing. It might just save your life When you know that something is hurting you can have it checked out. Pain meds often mask symptoms and if left untreated it might just kill you. Been there and done that and damn lucky and blessed to be alive to share with others the good and the bad.....

[Becky D]

I truely did not mean any disrespect to you, your husband nor your healthcare team. Only wanted to share my experience and caution you about the adverse effects. So very sorry If my opinions were out of line..... God Bless both of you...  Becky

[mikesimon]

I didn't say that you were "harsh, cruel or imcompassionate (sic)". I said that I believed your blanket statement about pain meds was irresponsible and arrogant. I know pain too but that isn't really relevant. I think it is presumptuous to make those types of blanket statements - morphine is great for those who have chosen not to fight. That really is a foolish thing to say and particularly for someone in health care. Becky, you don't know what I have been through or what my education is but again, that's not really relevant. We could go on and on with whose pain was worse and whose education is superior but I said what I thought was appropriate and you don't have to agree with me or like me. Mike