Too Late for treatment

[Lou712]

I was surprised when I didn't get more response to my post. I have been told that I am too late for treatment and need a liver transplant.

[zazza]

Your post from 08/02/07:

Devastated to say the least. I thought that I was going to the doctor yesterday to start getting on board for treatment. He said that it is too late for that and I need a transplant. I haven't researched that option. Afraid to, to be honest. I just turned 49 and he said without a new liver I will be dead within 5 years. I go to a hep c clinic... only the second time I have been there. I was out of my mind when I got the news... he was so matter-of-fact and I didn't really get any answers. HELP

[zazza]

I understand you must be devastated. What awful news to recieve! Can you give us more information about your situation? You say it was only your second visit to the hep c clinic, have you done a biopsy to determine the extent of your liver damage?  What is your doctor basing his decision of a transplant on? There are posters here who have gone through a transplant and treatment afterwards: Mikesimon for example. He is very knowledgable. He drops by here now and then. He will most likely answer any questions you have.

I am the same age as you, currently on treatment. I feel for you. You need to learn more about your disease and your situation. Can you get a second opinion from another doctor, preferably a hepatologist? Please tell us more. Zazza

[motheroffour]

You need to get a second opinion pronto.

[Lou712]

I had a hard time getting this opinion. I work full time but am a part time employee for the county so I have no health benefits but make too much for any medical assistance. I have hit brick walls since finding out about the Hep. No doctor would see me here pro bono. I brushed it under the rug until I had esphagel varices back in October of last year. I had two rupture and bleed into my stomach and was in icu for 2 days. I think that the Hep clinic doc is taking that along with whatever labs... geno1a and viral load over 2 million as his basis for this decision. I have yet to hear anything about any liver biopsy... Just shoved out the door and sent for one more lab and  an appt. to come back next week for the paperwork to take to Social Services to get coverage so they can put me on the donor list. They didnt seem to want to talk about anything but the next step is to get coverage... just to say, sorry.. wish I had better news, you need a new liver because you are past getting treated. Thanks for your imput.

[meki]

Uhmmmm weird.

Hit up a local medical college - if your state has one..

I can't imagine without a biopsy or ultrasound that they could determine that  your liver needed transplantation.

I mean - (not that I'm a doctor or scientist) but could someone  please tell me how they could make that announcement without those?

Lou - I'd get a second opinion if you could - and I'd also try to find some sort of insurance... Medicaid or anything.

They have Disability and more.

I'm sorry for your news, and I wish you well!

Meki

[mremeet]

Sorry to hear about your plight, that's gotta be tough to hear. If you haven't already stop any and all drinking. Obviously alcohol will only hasten the process. Also quit smoking and do your very best to eat a healthy diet and engage in some sort of exercise. Then look into getting a second opinion, if you've got 5 years of liver left (according to your doctor), you should have enough left to at least try treatment. Treatment would likely still be a good idea because the hepC will probably very quickly degrade a new liver anyway. If there's anyway to clear the virus prior to transplantation, that would be the way to go (there are some special considerations with this strategy though). Also learn about customizing your treatment using higher than normal dosage and/or extending your treatment well beyond the stadard course. You might also be able to access some new drugs currently under development (like I did) that may really boost your chances of clearing the virus. Also do you know what genotype your virus is?? They have several different types (1, 2, 3 etc) and some types are much easier to treat and get rid of than others. Genotype 1 is the hardest to treat, geno 2 and 3 are much easier to clear. If you are "lucky" enough to have geno 2 or 3, then your odds of success are that much higher. All in all don't lose hope, if you have the will to survive and the will to fight, if you're willing to clean up your act (assuming you have an act to clean up), if you're willing to educate yourself and take personal control of your situation, then you may just live out a relatively full life. It's really up to you - take charge!

[zazza]

It makes me upset that they just leave you on your own with such news. You need emotional support. This forum is a great place. Keep hanging around. There is a lot of knowledge around here that will help you. Might be people are out in the fine weather, and also weekends tend to be a little less action around here. Many take their shots on Fridays. Try searching the archive for old posts that may have the answer to some of your questions. I myself am not from the States, but I am sure there are others here who will tell you where one can turn for medical assistance. It does not always depend on what income you have if you can get that.

Viral load over 2 million sounds normal to me, geno 1a is what I have. 50% chance of success for treatment overall. If you can't treat now, you will most probably have to treat after a transplant. I am not that good at the English medical terms you mention, but I understand what it implies. Hope others will chime in here with more knowledge than I have.

Just know that you are not alone. We are here to support you. Zazza

[mremeet]

I'm not a doctor, but in cases of full blown cirrhosis there are a lot of markers that can give a pretty strong indication of cirrhosis without a biopsy. For instance, distended belly/fluid retention/swollen ankles (ascites), spider veins, ammonia in blood, enlarged spleen (observed via ultrasound), dark urine, esophageal varices (and hemmoraging), enlarged and hardened liver (often palpable externally), jaundice, low platelets, etc etc. An experienced GI/hepatologist can usually tell in cases where the cirrhosis is advanced by bloodwork and simply observing the patient. Early/compensated cirrhosis is harder to diagnose and still needs a biopsy to definitively nail down.

[jmjm530]

My understanding is that transplants are given based on a MELD score. Did you doctor give you your MELD score? If not, you should be evaluated and give one. I agree that a second opinion is always a good idea, when a major decision regarding your health needs to be taken. Contact your nearest transplant center and tell them the situation. The call is for free and maybe they can accomodate your request for a consultation without breaking the bank.

All the best,

-- Jim

[nygirl7]

IT IS TIME FOR A SECOND OPINON NO MATTER WHERE YOU HAVE TO GET IT.

[mikesimon]

The doctor who recommends transplantation should refer the patient to a transplant center. The centers I that I know about have financial counselors who can help you with the financial issues. I know 2 people without insurance who received liver transplants so it's not hopeless, by any means - if that turns out to be your only option. I am not saying that on the basis of what you've said your doctor told you that I am convinced that you need a new liver. But, I am saying that if you can get evaluated at a good liver transplant center you will have gotten an excellent second opinion and evaluation. If they believe treatment is an option they will tell you that and may prescribe and oversee your treatment, depending on the policy at the center.

From: http://www.mayoclinic.com/health/liver-transplant/DG00037
"If your doctor recommends a liver transplant, you'll likely be referred to a transplant center for an evaluation. Discuss with your health insurance provider which transplant centers are covered under your insurance plan. Most transplant programs offer the services of social workers and financial coordinators, who can help you work through financial issues associated with transplant surgery."

I think that if you get referred for an evaluation you will learn everything you'll need to know there. It's the second opinion that some posters have suggested but it will likely be a more thorough evaluation than you'd get from most hepatologists.

Good luck, Mike

[debnevada]

This is the link for a MELD calculator at the VA
You need:
DOB
Bilirubin
Serum Creatine
INR value

If you have those labs available to you ...you can calculate this formula yourself.

It ranges from 6 to 40 (gravely ill)

Various transplant facilities use the numbers differently. Finding this out is the first thing.

Deb

[debnevada]

What is the average MELD score for a patient undergoing transplant?


Currently, the average MELD score for a patient undergoing a liver transplant is 20 nationally. The average MELD score for liver transplant patients in our region varies from 26-33, depending on blood type.

The average waiting time for a patient to receive a liver in our region, once a patient is placed on the UNOS waiting list, is 12-36 months. This waiting time may be very short for a patient with very high MELD scores and especially those with acute liver failure.

Also, there is a link on California Pacific's website for referrals. I can also give you Dr. Gish's email address if you'd like to contact him ...I suggest that if it is possible for you to calculate your MELD you mention this. Also tell him about your financial status if you want to contact him. I know they make arrangements all the time

[Pdilly]

As NyGirl and others have said get a second opinion.  Also as Mike pointed out there are ways of gettng a transplant even if you don't have alot of money.  Hang in there.  I can't imagine how you must feel.  The doctor should not leave you hanging like that.

[debnevada]

I meant serum creatinine

[niceguy2007]

diagnosing cirrhosis without biopsy is not difficult.

look for the following:

blood markers:
long prothrombin time (PT)
low platelets
AST greater than ALT
high bilirubin level
low albumin level
possible macrocytosis / high MCV

clinical markers:
spider angiomata on upper body and face
red palms
jaundice/yellow eyes/skin
white/pale nails with dark red ends (terry nails)
ascites
water retention/swollen ankles

[wyntre9]

Sometimes people don't respond coz your post may have been bumped down lower.

This is a new forum format and everyone is still trying to get used to the changes.

I'm glad you got a lot of responses this time and I predict the same thing will happen in the future.

People on forum are wonderful.

Any more news, today?

Wyntre

[Lou712]

Thanks a bunch. I go back to the same doctor on Tuesday for the paperwork stating why I need a transplant to take to my local social service to seek assistance. I have the swollen abdomen, spider marks on my upper extremities, had esphogeal varices episode in October and off and on swelling of knees and ankles as well as cramping of the fingers and legs, dark urine at times. I have no clue what my ast and alt are but I think they both were around 58 in May when I went to the hospital for the constricting in my fingers. I also know that my platelet count has been low for a good while... had to have female surgery april 06 and they almost didnt do it because it was so low... I have had family and friends tell me that I need a second opinion but it has been some trouble even getting the first one. Again, I appreciate all the responses... took a bit to grind this out.  Sheree

[wyntre9]

You go, Lou!

Don't give up!  

wyntre

[meki]

Yes -- Don't give up!

Super good luck with the assistance - and try to ask everything - write it all up (all of your questions) ask... Where do I go from here.. How do I get there? What steps do I need to follow - what do I need to do? Who do I ask? What can help me?

Etc.

Hugs out to ya!

Meki

[new-sojourn]

I was told that I would be dead in minutes, hrs, wks w/o a transplant in 2001-9-12, b/ I'm not dead--I changed my lifestyle, did my tx and have watched many people die w/transplants and die w/o transplants.

So that's almost -what, 2001 and then 2007-oh 6 years.  My massive esophageal bleed should have killed me w/in 5 yrs-so by gosh-I outlived that prediction also.

I was infected via transfusion in 1967, 1st dx w/hep in 1968, then hep a in 1979 then hep b in 1989 b/only have ever had hep c since 1967.

So, my liver failed, I bled out, I tried one last shot and cleared in 2002-dx in 2001-Oct.

So, you really have a choice.

"They can't tell you when you will die.  Transplants don't necessarily extend your life.  Tx might or might not work.  You might put together a plan that works for you and beat the bastards @ their own predictions!!

[sfwandwow]

viralload of 2 million is normalin geno1,ijust came back frommy hepatologist

[mikesimon]

I have met some stupid doctors too and they won't necessarily extend your life either. Dead in minutes? You wouldn't have had time anyway unless they do the fastest liver transplants I know of. I am glad that you made it but I question your information. I had 2 major esophageal bleeds - one 4 units and one 5 units 2 months later in 1995 and I was riding my motorcycle in 2000 weeks before my transplant and the only reason I got transplanted was that they suspected HCC. Turns out I didn't have it. They never mentioned me having years or months or minutes or seconds when I bled out. They stopped the bleeding and had me evaluated. Mike

[copyman]

hey lou, sorry you are going through this. whatever you have to do you need to see a hepatologist & have a biopsy. this is life and death, beg, borrow or steal but get it done! getting help from the drug companies is not that hard for interferon and/or ribavirin there have been many people with cirrhosis that have treated, if not with the combo drugs then with maint interferon by itself. some have even regressed the liver damage! it could add years to needing a transplant and your life. i would not want to hear the word transplant until i saw my biopsy report! watch your diet and NO alcohol.  dont give up, it will all work out.

[Kalio1]

Sorry to hear your difficult news, I agree with the others, the doc who told you that should refer you to a transplant facility. Best of luck to you, I think another opinion is very important in a situation like this, two heads are often better than one.

Hang in there