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...
Need more info. How do you know you have Hep? How long do you think you've had it? What type? Have you had a liver biopsy? What are the results? Who are the mysterious "they" telling you all this stuff?
If your liver is decompensated, they may be telling you these things.
I was diagnosed with hep C and decompensated cirrhosis.
Like you, I didn't smoke, ate well, exercised and really thought I was healthy.
In 2006-2007 I did hep C treatment, it was very difficult and I relapsed.
In 2009, I had a transplant. At the time, I was living on 8% of my liver and had 6-8 weeks of life left according to the surgeon.
Liver transplants are not uncommon and if you are healthy otherwise, you have a good chance of doing well.
Look for a reputable medical center with good survival statistics and experienced surgeon in liver disease.
Now, I am doing hep C treatment and its working.
BTW: From diagnosis to transplant was over 4 years time, for me.
This sounds very strange. Is your doctor a liver specialist? Even if he is, go get two or three other opinions from liver specialists, called hepatologists. Go to a large teaching hospital with cutting-edge research facilities. What is your viral load? You should have blood work that shows several things: HCV PCR by RNA, a very expensive test but it shows your viral load, how many copies of the virus you have in your body, which doesn't always indicate the actual condition of your liver. Your LFT (Liver Function Test) shows your ALT and AST numbers. Sorry. I can't remember what the ALT and AST stand for, but the higher those numbers are, the more inflamed your liver is, but again, that doesn't always indicate the exact condition of your liver. A liver biopsy shows the exact condition of your liver and you should never, ever go through a transplant without a biopsy. Biopsies are usually always required before getting treatment.
In summary, get all of these things and a second opinion from an excellent liver specialist: 1) liver biopsy, 2) viral load and AST and ALT; 3) genotype; 4) how long you've been infected. If you're anything but genotype 1a or 1b, you have an excellent chance of being cured. Unfortunately, I'm a 1b. What you're saying sounds crazy to me. I've never heard of a liver specialist recommending a transplant without treatment, and are you 33 years old? For one thing, there are too many older people dying waiting for transplants for you to be able to get one when you haven't even been through treatment yet. Bizarre. Let us know what happens.
"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.
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?
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?
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.
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.
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.
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.
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.
Treatment can be especially challenging for those with cirrhosis; because you have existing bleeding concerns, treatment could potentially make platelets drop into dangerous range and further complicate your liver condition. Being that you have symptoms like edema, the possibility of treatment should only be determined and managed by physicians specialized and experienced in viral hepatology and Transplant medicine.
Exercise is very important with progressing cirrhosis, as well as good diet: of course no alcohol, but low fat, high protein, low iron, and low salt are essential (especially with the edema, cut out the sodium in your diet and work up a sweat if you can). Hope that helps, and know you're not alone ... welcome to the forum. ~eureka
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.
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.
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
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."
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.
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.
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.
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.
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?
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