somethings been bugging me

A good friends wife ha shep c.  She had a liver biopsy and the consult a week and a half ago.  All along I have been telling her husband to get copies of all tests.  She is going to a major center in Pittsburgh.  Geno 1a or 1b.

I talked to her hubby yesterday and he was in very good spirits, told me that things weren't all that bad but the doc told the wife to loose weight and exercise more.  I was thrilled.  Then he proceeds to tell me that treatment is not in her future but the doc is signing her up on the transplant list.  My mouth dropped.......to me "not that bad" and "transplant" do not belong in the same sentence.  He says that she is happy with her doc and they are going along with his recomendations, as he / she seems knowledgable.  I asked if they got copies of the VL and the biopsy and of course they didn't.  

I didn't know what to say.  I think there is more and the doc never even told them the degree of liver damage.  I like these people and don't know how to go about educatting them, I already suggested this site.  Maybe I am wrong and a TP isn't so bad?   Any suggestions?

Denise

[ladybug52]

Whew!
Maybe I am wrong and a TP isn't so bad?  
I wish! That's crazy that they are so naive that they think a transplant is a nice viable option...........that's not like getting a tooth pulled instead of a filling, and you know that.
If she's a good friend, can you maybe ask her how she feels about being put on a transplant list? Maybe they do know how serious this is and are playig it down as a way to cope??
Godd luck, it would "bug" me too!
Bug

[Looks4Path]

WHAT???? A transplant is the pitts! And to me the absolute last resort! That being said I have a friend who happened to call me who I knew had Hep C, but had not ventured to discuss treatment with yet. I was amazed to find out that she did not know her geno type, nor could remember her viral load, nor asked for any paper work at all, yet use to be a surgical nurse years ago. Just followed her doctor blindly. It was me that had to tell her she was probably geno type 2 or 3 because she treated for 24 weeks. She never did any research on it. This is a VERY informative list, and I have been well prepared by being on it, but most people might not end up here. I am a hair dresser and have several clients who have hep C and you would be surprised at how many do not know their geno type, and could not even tell you what their biopsy results were! I just think all that are here on this list are much more informed than people, who were lucky enough to find it. My heptologist the other day kept saying "you sure seem to know alot about this", and my reply was that I make it my business to research what I can about Hep C, but then I have never been one to follow a doctor blindly. Maybe you could suggest she get involved with this list and learn what she can. Aside from imparting knowledge that you already have, not much more you can do, it might be the "Ostrich syndrome".

LD

[jdwithhcv]

It is just possible that the your clients do not wish to reveal their personal medical information to their hairdresser.  Not necessarily "Ostrich syndrome", it might just be that they think it is none of your business.  As for the nurse who "followed her doctor blindly" are you suggesting that she should not follow her doctor's advice?

Just because you consider yourself well informed about Hep C does not mean you are qualified to give medical advice, nor are people likely to seek medical advice from a haridresser.

[GSDgirl]

I had the same reaction about a TP.  To me that is bad but they seem OK if not happy about that.  I already gave the hubby this forum and offered for her to call if she needs anyone to talk to which is all I can do.  

Many people tell their hairdressers things that they don't tell anyone else, kinda like the bartender LOL

[jdwithhcv]

I agree many people will confide in a hairdresser or bartender, but they are rarely consulted on medical matters!

[GSDgirl]

JD , I said that in jest..........BUT if I knew my hairdresser had hep c and beat it I would be asking questions but maybe that is just me.  When I started this journey I had no one, not even this forum.  Didn't find it till the end.  I would have loved to talk to someone else that knew what was going on.

[Looks4Path]

Just to clear the air, this is information clients informed me of without me asking! At that time they were telling me I had no idea about Hepatitis C! Since then there are a few I feel comfortable with discussing my situation. I am not looking to advise them, but hoping they could probably provide insight into my situation! These are not only clients but friends as well, we have had a relationship for the last 10 years or more. Your would be surprised what clients would tell their hair dresser's and bartenders, and in my opinion your job is usually to listen, not give advice. This was my turn now, and believe me they DO want to talk about it, just don't remember things like lab reports or geno types ect. GSDgirl is right, these are friends/clients that have opened up to me in the past that I hoped I could get some answers from now.

Absolutely not suggesting the nurse not follow her doctors advice! Nothing was intended with that, I just find it amazing that people do not seek to understand their health issues or even why they are given certain meds.

Sorry I offended you.

LD

[newleaf09]

It takes all kinds.  I've really noticed the varying degrees of personal research done by posters.

I am a little reluctant to say much about TP's because I know some of the readers are facing them.  BUT, I would do anything to avoid it since you will be on antirejection, immunosuppressive drugs the rest of your life (I assume), your life will be shorter and the virus will reinfect the new healthy liver.

With very careful monitoring, they do treat decompensated people on TP lists with a hope of clearing the virus and keeping the expected new liver healthy. If you are decompensated, you are very sick and can't work.  Why not try to clear during that time?

[Kristina538]

The last time I confided in my hairdresser, we ended up dating (he was good a cutting hair too :-).

Well done to you for giving them this site;  so many people blindly follow their doctor without taking any responsibility for their own health by doing a bit of research.

[mikesimon]

If she is being seen at Starzl I think there must be more to the story. Recently there has been an issue at Starzl that disturbed me but I cannot believe that any hepatologist or transplant surgeon there would list someone who wasn't very sick.
I echo the sentiments of people who've stated that a transplant is to be avoided if at all possible. I tell everyone to keep their own parts if they can so I am not looking for reasons to advocate a liver transplant. But the story, as you've related it, does sound strange.
Mike

[GSDgirl]

Was the doc that I asked you about Starzl?  If so their doc is in the same practice.  I honestly think there is more to the story myself.  I do know that when she went in for the biopsy they immediately put her in the hospital as she was full of fluid which I think is ascities (sp?).  I asked him if that was what the fluid was and he said no.  they drained (as he / hubby said) 50 gallons of fluid.  She spent a week in the hospital, they did the biopsy, she came home and went back to work.  I'm still shakin my head

Denise

[IAmTheWalrus]

I think the important part here is the result of her liver biopsy. I can not imagine a doctor referring someone for transplant who was not in the late stages of the disease (F4, cirrhosis). Ascites (50 gallons of fluid is a little hard to believe!), jaundice, esophogeal bleeding, and encephalopathy are symptoms of end-stage liver disease. Also, a MELD score which takes into account the liver enzymes and billirubin in the blood and other factors provides an indication of life expectance used to determine ranking on the transplant list. If this score is high, typically15 or more, she should be on the active list in my opinion. Listing patients at low MELD scores typically is not done because the chance of being high enough on the list to actually get a transplant is remote, and the patient must be re-certified to be medically eligible periodically which involves some fairly expensive testing.

Head hepatologist told me prior to my transplant, "It's best to keep the original equipment, if possible.  Removing a liver that does not need to be replaced does the patient no favors."

If she needs to be on the transplant list, this is an indication of imminent life threatening disease (IMO).

[GSDgirl]

I agree.  Either they are blindly listening to their doc or they don't want anyone to know how bad it is.  I thought 50 gallons sounded like a lot too but she was swollen from her toes up to her chest and it took a week in the hospital.  I just never heard anyone "say" on here so nonchalantly talk about a transplant instead of treating.

Thanks for the responses.

[fretboard]

I would think that any amount of ascites is not a good thing and I have often thought that if a person was already retaining ascites then it's too late to tx.  Is this true?  

[mikesimon]

50 gallons is crazy talk. 5 gallons would be huge. I read a study where the average volume was 2.6 liters which would equal around .7 gallon and the largest volume was 7 liters or < 2 gallons. I emphasize this because it might reflect the degree of accuracy of the information you're getting.
I will say that when it comes to whether treatment should be attempted I would want more than one opinion and especially so when the first opinion is negative. I question whether all doctors - hepatologists included - are completely aware of this subject. Cirrhotics have cleared. Before I was transplanted I was told I couldn't treat and I knew nothing so I believed what I was told. Looking back on it I believe they were totally wrong. I was diagnosed in 1995 and I was riding my motorcycle daily until my transplant in 2000. And even then I wouldn't have gotten a liver if a lesion hadn't been seen on a routine annual scan. I wasn't that sick.  I was riding my bike and I could have ridden it to my transplant surgery had the call came at the right (or wrong) time.
I would question the statement that treatment is not in her future before I would acquiesce and just wait to get worse. That's what I did and I was wrong.
Mike

[portann]

Great and insightful post, Mike. Shows how medical tx decisions are so complex, and the invaluable  wisdom of hindsight.

[eureka254]

My husband is walking testimony to what mikesimon said above.  All the standard and "usual" guidelines tell us:  that geno 1s with cirrhosis have too low a chance of clearing to bother treating; that a cirrhotic with ascities cannot treat; that having decompensation factors excludes a patient from treating, etc. etc. etc.... but my husband is all of these, and we found expert hep docs who could handle all of the above, help him through treatment, (although not without risk, certainly), but he IS currently und <5 and has been since week 13.  

GSD:  That being said, it also requires someone who's willing to be self-determined (or have a very strong advocate), step up, and seek out the care necessary, and that is something your friend and her husband can only do for themselves.  (Dunno if you already read the below in your other thread...if not..)

Sometimes the only way people deal with a tough situation is to completely ignore the the bad news and focus on the good.  Being impersonal and off-hand helps some people cope.  (Probably a minority of the people on this forum :), but maybe the majority in the general population...?)

It's not all that unusual for people who are face-to-face with chronic/terminal illness to completely ignore the diagnosis and simply continue on with life as they know it.  Denial is sometimes putting off or ignoring the inevitable as long as you can, JUST so you can enjoy the here and now, however short-lived that may or may not be...

Perhaps the doc focused the consultation on the benefits of TP, and left your friend and her husband thinking that:  it's 'not that bad' right now (compared to variceal bleeding, encephalopathy, hcc, etc... it's all a matter of perspective, right?), and maybe they're thinking that she's not "terminal," as there is the possibility of liver transplant.  Sometimes docs tread a fine line between "education" and "compassion"... I know it must not be easy for you, but sometimes knowledge can be a terrible and painful thing.. and sometimes the methods our loved ones choose to handle problems are a far cry from the choices we would make... and sometimes you have to let the ones you care for to uphold their chosen ignorance so they can feel some bliss.  Best wishes,
~eureka

[GSDgirl]

OK, I probably pulled the "50 gallons" out of my arse.  I don't know where that came from, at the time I wrote it I really thought it was what he said, he did tell me an amount and I tried to call him but missed him at the office.  I will find out for sure tomorrow.

Thank you for all of the good feedback.

Denise

[fretboard]

Good information on this thread.  thank you

[IAmTheWalrus]

Denise,

I see you have rethought the "50 gallon" issue. I will still point out that 50 gallons of fluid weighs 417 lbs. He would certainly feel a lot better after the weight loss.

I got the same advise as Mike on not being able to treat with cirrhosis. I have read several articles that would dispute that. This shows the importance of having a hepatologist that specializes in treating hep C, if possible, as they are the only ones likely to be abreast of the latest studies and treatment tailoring options. This changes on a monthly basis. Most GIs are not up to date on these issues.

Brent

[GSDgirl]

Hi, I had the 50 something right but it was 55 lbs.  She has a clot on her liver that they are going to watch to see if the blood vessels bridge (?) around it.  She was put on the transplant list in case it is needed because it takes so long if it is needed.  Supposedly her doc is going to keep an eye on things for a few, maybe 3 months and if the clot issue resolves she will do TX.  I hope all goes well for her, she is bullheaded, will not reach out for any info which is why her hubby talked to me.  Hope that clears a few things up LOL

Denise

[Mr Liver]

Someone with decompensated cirrhosis is a poor candidate for tx and as such must be treated by someone extremely familiar with the risks involved. The clearance rate is very low (10-25 %) and that alone is a good reason not to treat especially in view of some of the possible outcomes of treating at this stage of disease. Just as tx can push someone from a compensated liver to a decompensated one, the same deleterious effect can occur for those treating with decompensation---it can push them to fulminant hepatic failure. It may actually worsen their condition to a point where a transplant is no longer possible. This is serious business at this stage of the disease. Rarely do people get disqualified and then again become qualified and receive their liver. The window of opportunity arrives one day and unfortunately can close rapidly if an appropriate liver is not found within time.  I'm not sure how many would like to chance tx in the same situation even if they could find a doctor who has the necessary expertise for these cases.
ML
I think most people would be very happy to get listed when their prognosis is poor for survival. No one wants to get a transplant but even fewer want to die. To get listed can do wonders for your anxiety levels brought on by a growing sense of helplessness and the uncertainty of what the future may hold. It might even put a smile on someone's face. It's a fact that a transplant can be just the start of a plethora of new medical challenges---but this is far better than the alternative in most patient's views.

[Mr Liver]

"She was put on the transplant list in case it is needed because it takes so long if it is needed"

The transplant list isn't a first come, first served type of system. It is based on necessity. If the neediest person has been on the list 5 minutes they get it. In fact, you don't even have to be on a list to get a liver, but this is not a very easy or wise path to go down.

The one exception when time on the list can be a factor is when 2 or more people who have same MELD scores and both share the same blood type and are at the top of their blood type group. In these types of cases, time on the list is the tiebreaker.

ML

[GSDgirl]

Your links are nothing but nonsense

[ladybug52]

This has been interesting. Although I spoke earlier wothout much thought, I'd like a chance to repair the damage.....
When a person has not responded to tx, or has poor chance at succeeding on tx, a transplant isn't a bad option. I  wish that I had shown the sensitivity of Newleaf before I spouted off. I'm always learning here and this post is another example of things I don't know enough about.
Thanks,
Bug
PS: were the nonsensical links deleted?

[GSDgirl]

You weren't insensitive at all in my opinion, it was the same as mine.  Yes the links were deleted, somwe idiot was pushing homeopathy and medical mafia.  I looked at a few links and they were stupid.  He pirated a bunch of old, old posts.