I cant get TX only option is to see if can have a transplant?

[Alive33]

has anyone been here before, i am sure theres plenty of tests some regular, idk what they are Im 33 i was told i cant have treatment for Hepatitis C, I can have a transplant or die

I dont drink or smoke i do all the good stuff like for 2 yrs im not yellow. will i go yellow? idk anyway they said you have about 5 years if you dont have the operation. So now im seeing people about an operation I know about only from reading. I just wanted to hear of a personal experience if you know someone who's been there done that what it was all like are they still good cause after I have it I will have to have treatment if I am able to have the transplant or if I survive the Transplant.

So in all I just would like to know a timeline for how this might go down if you can help. anything else you wanna add feel free...

ta.
A33

[orphanedhawk]

Red meat means beef or lamb.
The best thing for protein for cirrhotics is fish, eggs, chicken, tofu, and beans.

[Alive33]

yeh they never said anything about red meat just said eat lots of meat, I did ask about a dietician they said they will organize that but maybe someone here will idk. whats some red meats you mean, like steak?

[orphanedhawk]

I read your list and the only thing I found questionable was one thing about your diet changes.

Yes, you need protein and limited salt but I think they would tell you to avoid red meat.
It can increase your ammonia levels which contributes to a kind of mental confusion which those with decompensated cirrhosis often get.

It's good you have your brother to help you.

[Alive33]

I took my brother i needed somone I could talk to about what they said.

[Alive33]

Thanks those Q's really helped heres what they said.
What is my current health status?--- decompensated liver
What is my MELD score? ---16
What is my prognosis?-- very sick
I have stopped drinking alcohol will my cirrhosis get better? --no
What additional tests do I need and how do I do them? ----lots
What changes should I make to my diet or lifestyle? ---high protein, lots of meat no excess salts
What medications, vitamins, supplement, etc. should I avoid? ----benzodiazpines, herbal remedys, nurofen, deep heat.

Additional Questions You May Consider Asking

Am I a candidate for a liver transplant? ----yes maybe
What other options do I have besides transplantation? none

What are the risks of transplantation? --death, infection, immune supression, rejection, recovery complications,bones deterioate, diabetes
What are the benefits of transplantation? ---living, feel better
What are the transplant success rates at this hospital? ---very good
How many transplants do you perform at this hospital each year? ---30 - 50
How long has this hospital been doing transplants? --since the 90's

What does the evaluation and testing process include? How does it affect whether I am put on the list? a meeting with 12 people drs social workers psychs all health pros who decide wether you should be put on the list

How do my test results affect whether or not I am put on the list?  --blood group, stage, suitable donor. any complications.
How long is the waiting list?-----6months- 3 years
At what MELD score are you transplanting at? 12 and up
Do I need to stay close to the transplant hospital while I am put on the waiting list?---be within 2 hours of hospital
Will the transplant center team advise my local health care providers of my care requirements?---they will

Then the Dr asked me a Q like have you ever been caught Drink Driving, and i was like yeh, and they asked what was your reading, IDK coz I was a kid and I stole the car I just got charged for driving under influence and UUMV. They said they want to know your whole story i dont understand why it has to be the negatives only.

I will also have to see this drug alcohol councilor IDK why i dont drink or drugs. I asked about a support group they said they didnt have one besides the health proffesionals.

its a long trip to see them so it was helpful knowing what to ask TY. they expect over the next 3 months this will all come to a resolve and I will go on the list or I wont.

[HectorSF]

Find out if there is a Liver transplant support group at the hospital or in your area. You will learn a lot about the process from others going through the same thing as you and you'll see that you are not alone in this, so it is a lot less frightening.

Also you may want to start thinking about who is going to be your "care giver". The person you can count on to support you through your transplant when you are too ill to help yourself. At my transplant center they require you to have a support system of many people as no can do this alone.

Hector

[HectorSF]

Hi.

See the link to "A Patients Guide tor Liver Transplant" that will tell you about the entire process from start to finish with liver transplant.

"Cirrhosis is a long-term condition where normal liver cells are damaged and begin to die. This causes the liver to not function as it should. In the early stages of cirrhosis you may not know it is happening. Eventually, cirrhosis can cause complete liver failure where the liver completely stops working. Cirrhosis can be caused by drinking too much alcohol, hepatitis, certain diseases, medications, and changes in the area around the liver itself causing blockage of the biliary tract (the tube the carries bile). Cirrhosis can eventually lead to symptoms like ascites (fluid build up in the belly) and jaundice (yellowing of the skin). Cirrhosis is a serious medical condition that will require a great deal of attention by your doctor."

Questions:

What is my current health status?
What is my MELD score?
What is my prognosis?
I have stopped drinking alcohol will my cirrhosis get better?
What additional tests do I need and how do I do them?
What changes should I make to my diet or lifestyle?
What medications, vitamins, supplement, etc. should I avoid?

Additional Questions You May Consider Asking

Am I a candidate for a liver transplant?
What other options do I have besides transplantation?

What are the risks of transplantation?
What are the benefits of transplantation?
What are the transplant success rates at this hospital?
How many transplants do you perform at this hospital each year?
How long has this hospital been doing transplants?

What does the evaluation and testing process include? How does it affect whether I am put on the list?
How do my test results affect whether or not I am put on the list?
How long is the waiting list? At what MELD score are you transplanting at?
Do I need to stay close to the transplant hospital while I am put on the waiting list?
Will the transplant center team advise my local health care providers of my care requirements?


Here is a very good "A Patients Guide tor Liver Transplant" that describes the full process from getting listed to living post transplant.

http://www.universitytransplantcenter.com/files/Liver_Guide.pdf

Hope this helps.
Good luck to you.
Hector

[eureka254]

PS:  If the TP team doesn't put you in touch with a dietician during the visit, you should ask if they might refer you to one in consideration of your history.

[eureka254]

Considering that your family is still in denial, I would highly recommend that you bring them along with you to your Transplant appointments.  As your condition is serious, it's important to have someone with you at appointments whenever possible -- maybe it will help your family have a better understanding of what your situation is as well.

When you go to the appointments, keep a notebook, jot down things to help you remember what is discussed, and also take a list of questions with you... things you think of between now and the appointment.  Make sure you list all your symptoms, whatever they may be so that you can ask your doctors if they can address any concerns for you... often times we get in the office and forget what we wanted to ask, so having things written down always helps. Keep the list in priority order, so you have the most important questions first in case you run out of time with the doctor.

When the doctor is examining you, you should feel free to ask what he's looking for, why he is checking different areas, and what his findings are.  Remember too, to always ask for copies of all your reports before leaving your doctor's visits.  It's a good way to help track your own progress and have things to refer to later as you get a better understanding of what all the testing means.

You may want to ask your TP team what your MELD is, and what the current transplant MELD is in your region.  Transplantation listing currently is based on a patient's MELD number, a calculation of based on lab results of bilirubin, INR, and creatnine (blood tests), and ask them if they see any reason why you would not be a candidate for transplantation based on their findings.

Having hemochromatosis in addition to hep C makes it especially essential that you reduce your iron:  NO iron in your diet. That means no iron-fortified breakfast cereals, no multi-vitamins with iron in them, no red meat, no spinach or broccoli, and NO cooking in iron skillets.  Start reading labels for both sodium AND iron content... veno sections may be a necessary evil with high iron and cirrhosis, but there's a lot you can do to avoid them being done as frequently.

I hope the visit with the TP team goes well for you.  Good luck and keep us posted. ~eureka

[orphanedhawk]

I'm such a mush head these days from doing treatment.
I'm sure I could come up with some questions but instead I emailed HectorSF to see if he would answer your question.
He is currently on the transplant list and has a wealth of knowledge.

Good luck
OH

[Alive33]

can you suggest some Questions I might ask the Transplant team in case they forget to mention it? I see them this week so ill let you know how it goes.

[orphanedhawk]

Instead of 50 pages of material, maybe your parents can digest a page or two of clearly explained information.

On the other hand, they may not be able to handle the truth about your situation.
You may need to progress forward whether they can understand or accept your situation of not.

Best of luck,
OH

[Alive33]

With the iron I have Veno sections cause I have hemochromotosis which just means high iron in my blood as I know it to be. and having good levels of iron does make you a better candidate for transplant.

Thanks for having me Im sure I dont know half of it ill catch on.

[Alive33]

I found them interesting I fwd them to my family, some of that i know, alot i know there is available, I just cant have it. They talked about boosting my platelets if they were to give me treatment. but they wont do treatment.

Edema i get swollen ankles if i sit to long never used to happen, Excercise does help a bit but fluid retention is still apparent.

The Dr like i said before put 5 years on the board i assumed that decision could be based on the 20 yrs with Hep C and alcohol abuse.

[Alive33]

No I see Specialists, I have a GP and I go to the Hospital I see Professionals lol no fake chinese herbs.. lol .. I go to see the transplanters next week and they will discuss a means to an end. Seriously man I have thrown a whole 50 pages from the hospital transplant team at my family they do not get it. They need to hear someone elses perspective or they just never going to know, avoidance is the problem. Everytime i say look, they say they know, so tell me what you know and its far far from convincing, I have to enforce to them they are not Dr's and they have no medical training to know such things are factual.

thanks ill check them

[orphanedhawk]

Here's something to get  you started.

Read through the facts sheets and share them with your family.

Good luck,
OH

http://www.hepcadvocate.org/
http://www.hcvadvocate.org/hepatitis/Basics/Fibrosis.pdf

[orphanedhawk]

Your spleen is enlarged due to your cirrhosis.
And yes, the enlarged spleen affects your platelets.

Sometimes people don't understand how really, really ill people are with advanced liver disease because you may not be in obvious pain.
If you are this ill, doing interferon treatment isn't going to work.

You do need a transplant.
I think you really need to find a reliable hepatologist, liver doctor, as soon as possible.
Don't wait.

I'll try to send you some links.

[Alive33]

I had some imaging so far, like this has been 2 years, they waited for my platelets to increase to go on treatment, however they dont. they get eaten by my spleen, Im no MD but thats as I understand it.

So with the clotting, because my platelets are so low they have given me transfusion before. See IDK until I got real sick from something else how sick I was. So i had transfusions and the platelets went up but they didnt stay up. I get some hardcore bruising, like I got punched in the leg. but it goes away. I bleed a bit but i dont bleed out unless i have serious accident, so I dont play contact sports. My spleen is enlarged. IDK what it all means I just assume its not good, but Im not depressed and if it is a no go I am not really sure what to do then that would be the hardest decision to make.

I encourage my family to read this as i have repeatly tried to explain this to them they do not or will not accept and understand. They think it will get better, unfortunately that is impossible. if their was a magic elixer or tab sure. reality is it will get alot worse before it gets any better. I would encourage people to talk about it with someone they know it would make it easier i know how hard it is i find it alienates my social life and leaves me pretty alone at times. again im not sad IJS I can handle that some people probably cant and if I did have people I knew i could trust to talk to about it who understood it would make things much easier and less frustrating to explain.

thanks

also i live in Australia not America or Europe.

[mikesimon]

Basically transplantation is intended to extend life so any factors that compromise the likelihood of that result exclude a patient from receiving a liver.
Exclusionary factors include infections, extra-hepatic malignancy (cancer outside the liver), ongoing alcohol or drug abuse, cardiac disease, advanced liver cancer (they'll transplant a patient with up to 3 lesions equal or smaller than 3 cm and 1 lesion < 5 cm). This criteria for liver cancer is called the Milan Criteria and some centers have expanded that criteria slightly in certain cases but generally the policy is as I described.

Once you're listed you'll be followed by the transplant physicians. You'll undergo imaging studies and blood tests and your MELD score will be determined. The higher your score the more likely you are to receive a liver. The MELD score is based on 3 factors - bilirubin, creatinine and INR (international ratio or essentially clotting time). You will be monitored by the transplant center and periodically your MELD score will be re-evaluated.

Look at this link. I think it will be very helpful.

http://www.aasld.org/practiceguidelines/documents/bookmarked%20practice%20guidelines/liver%20transplant.pdf

Good luck,
Mike

[Alive33]

This is from a heptology clinic as in a hospital, I have had hep c since I was 15 maybe or transfusion idk but I drank a lot of alcoholic beverages which is why I have a problem. If I drink now the heptologist told me I die, I never had biopsy. I got told my platlets are always 30 -40 low enough to cause bleeding and bruising.

Can you tell me what its like on the wait list or if you make it what qualities they look for in transplanting?

[orphanedhawk]

I never had a biopsy until after my transplant.
And treatment isn't always a good idea if the liver is already very damaged.

[FlGuy]

Even if you have a transplant you will still have HCV.  Studies have shown that HCV can damaged the transplanted livewr at a faster rate.  Then, you are in a similar boat.  Best approach is to deal with the underlying condition before it gets that far.  Why can't you do TX?  

[mikesimon]

"A liver biopsy shows the exact condition of your liver and you should never, ever go through a transplant without a biopsy...."

I had a transplant without a biopsy. Many transplant recipients do get transplanted without undergoing biopsies because the doctors often don't need a biopsy to know that a transplant is necessary. It can also be quite dangerous to biopsy patients with decompensated cirrhosis.

I don't have any idea what the situation is with Alive but I wanted to clarify transplant procedures and practices.

Mike