Cirrhosis of the Liver Community
Does this make any sense
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Does this make any sense

As most of you know I am going through the steps of getting qualified for a transplant.  So far have been acing all the tests.  Everyone who does a procedure or a test says "are you sure your getting a liver transplant"..."you look so healthy".  How frustrating.  But guess looking good on the outside doesn't do anything for the inside.  If it wasn't for bouts of fatigue I wouldn't even feel ill.

In the 3 hours education class I learned a couple of things that are bothering me.  First of all I owe an apology to the poster who said that they transplant HCV patients with HCV livers.  Because they do.  In fact that is the choice if your HCV is not SVR at time of transplant they will transplant a liver from someone who also had HCV.  As a non-responder this poses a lot of questions in my mind...  Then they also told us that they transplant livers from HIV patients.  This really bothered me.  I didn't question what was being said but they said that if one became available and they called you they would tell you that the liver was from a CDC donor (meaning high risk) and that is all they could tell you.  

So here you get the transplant, your HCV is active, they transplant you with another active HCV person's liver or if you accept a CDC donor liver.  You have the surgery, the 4 - 8 week down time, the next year is spent in numerous appointments.  You can't drive for the first 6 months or shouldn't. You have to take immunosuppressant drugs and your HCV is still active and now you have a liver that came from someone who had active HCV or HIV.  Then you have to fight one, if not two deadly diseases on top of the transplant.  And if you are a non-responder you are going to be in the same boat real soon.  

Can someone tell me what I am missing here?  I believe in quality of life rather than a vegetative quantity of life.  Every one I meet at the hospital are impressed with my energy and positive attitude so I am trying to see the bright side of this picture.
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And I meant to say....and ask...

I don't want to seem selfish when we have great ones like Hector fighting for his life and a transplant.   I need feedback from him and people who have had transplants.

Is the above procedure normal?
Is this why this university does so many tp's at low melds scores?
What are the procedures in other areas?
Do all people who have active HCV get transplanted with a HCV liver?

I've never even had a STD so to even think about having a liver transplanted in me from a person who has active HIV would just freak me out.  

And the person with the HCV, how did they get it, we all know you really don't know how you get this disease but how did they treat their bodies once they knew?  

Just because a liver is compensated does that make it healthy?

If someone else's liver is transplanted in to you can you get other health problems they possibly had.  

My brain when I allow it to think about this starts spinning out of control with a zillion questions.  And I know some questions just do not have answers.  
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I am afraid you have some basic misunderstandings about the transplant process and donor livers. Each patient get to make the choice of what donor livers they will except. Or course this can change over time as the chances of dying become greater the the chances of receiving an ideal liver.

It doesn't matter if you receive a donor liver with hepatitis C or not if you are infected with hep C when you have a transplant. As soon as the donor liver is connected to your blood supply that liver will become infected with hepatitis C even if it didn't have hepatitis C before. The reason that people with chronic hep C choose hep C infected donor livers is it can you will get a liver sooner than those without hep C as only those infected with hep C will be given a hepatitis C infected liver.

All hep C patient I know have received hep C infected livers. It makes no difference in the outcome post transplant. Talk to your hepatologist about making choices about what is any non-ideal donor livers you are willing to accept. Remember, most patients that die from liver failure were given a choice to take a liver but turned the offer down.

Transplant centers don't use livers from these donors unless the recipient already has hepatitis C of a particular kind, called genotype I, and only when the liver isn't scarred from the hepatitis infection. In these cases, the results appear to be as good as if the patients had received a liver from a donor without hepatitis C.

What's an "ideal liver"?

An ideal liver comes from a healthy young person who has died. Ideal livers are more likely to work well and less likely to transmit cancer or infection. In the United States, roughly a third of all liver transplants come from ideal donors. This means it's impossible for every patient to get an ideal liver.

It's important to note that it's possible to get an infection or cancer even from an ideal liver. The risk if low — probably less than one in 100 — but it's not zero. It's impossible to test donors for every type of infection or cancer, tests may not detect a problem and we may not know that the donor practiced behaviors, such as IV drug use, which would make the liver more risky. These are risks that every transplant recipient takes.

A donor who was in prison, used IV drugs or had sex with a high-risk partner within the past year. These donors may have a higher risk of transmitting HIV, hepatitis C or hepatitis B. We test for these viruses, but if the patient has recently become infected the test may not detect them. We believe the risk of infection from these livers is quite low and for some patients, it's probably below the risk of dying while waiting for a transplant.

Transplant centers DO NOT use organs from donors who test positive for HIV.

How do I decide between taking a non-ideal liver now and waiting for an ideal liver?

When a non-ideal liver becomes available the transplant center will give you our best estimate of the actual increased risk from that liver. If you don't feel ready to take a higher risk at that time, you can decide to wait for another liver. Doing so will not affect your status on the waiting list.

The risks and benefits of this decision may change over time if your liver gets sicker an you have a higher risk of dying without a transplant.

If the transplant center thinks you will not survive a transplant you will be removed from the waiting list. So only those patients that have a good prognosis are given transplants.

Hector
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Oh Hector...I knew in my heart you'd be the first to respond.  Your answers as usual have put my mind to ease.  Yes, the transplant nurse said there would be questions we would need to ask the doctor.  She wasn't evasive but she wouldn't allow herself to get pinpointed down on a question.  She had a script and followed it. And she did say you could refuse the CDC liver.

I, like many of us, wish I would or could of kicked HCV before any of this.  But your answers and comments make a lot of sense and have calmed me quite a bit.  I tend to overthink things but that's normal for writers.  

She gave a lot of info.  I tend to ponder on info afterward and I don't see my doctor until June 12th.  That's a long time to have to wait for answers to questions.  

That's why I am so thankful for you and this site.  I have gotten a lot of support from you and so many others.  I am just such a mental fight of acceptance and denial.  If it weren't for the fatigue I feel great. I know that can flip in a nano second.

How are you doing.  It is great to see you on all the posts you have been posting on.  You must know how respected and loved you are by so many on here.  Still keeping fingers crossed and heart full of hope for you.  

Thank you again for giving me some common sense....Summer :-)

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Try not to get ahead of yourself. You have plenty of time to think about what livers you are willing to accept you can change your mind at any time. Since the only symptom you have from liver disease is fatigue generally speaking you have a long time before every getting to the top of the waiting list. At most transplant center it is only when death is the only other option that patients are offered donor livers unless you are listed at a transplant center that transplants at a very low MELD score. Many patients with liver disease wait many years to be eligible for a transplant. The name of the game in the transplant world is "wait".

By the time you are really for transplant patients usually have years of experience dealing with the complications of a failing liver. You should enjoy the health that you have now as in time you will become more disabled and more unable to care for yourself. You should start building your caregiver team now as now of us makes it to transplant and through recovery a lone. It is only with the help of others we can get through liver failure transplant. It is a good time to get things in order while you are still healthy as lately you will be limited in what you will be able to do.

This disease is 80% mental 20% physical. We have little to no control over how our illness progresses. That is up to our doctors to manage and for us to be compliant. But the real ordeal is dealing with the mental and physical pain and suffering as we slowing get more and more ill over time. It will take all of your stamina and will power to deal with what will happen. It will be a roller coaster ride of good days and bad and good news and bad. As long as you have the will to live you will be fine. Although this journey will change you permanently that isn't always a bad thing.

Good luck that is one step at a time. Jumping ahead with only create anxiety that in most cases never happens and you need to save all your energy to fighting The reality of your situation not rumors and other misunderstandings about liver disease and transplant. There is at least as many myths about liver disease and transplant as there are about hepatitis C and most of what the general public believe is false.

I am recovering from my last last chemo treatment. Unfortunately I am bedridden and experiencing terrible pain. But it is the price I have to play to try to stay alive. So I have no regrets. I have been through suffering like this many times and I will get through it this time as well. It can be me. I know that at this point. There are no good options when liver cancer gets this advanced. So I accept it as best I can and suck it up until I start feeling better. It beats the alternative any any day.

Good luck getting listed.
Hector
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Advice:

In order to learn about the transplant process from a patient's point of view the best thing you can do is to attend a liver transplant support group. Many transplant centers have them. You will meet others pre and post transplant and hear their experiences. You will learn that each person's journey is unique. There is no standard pre and post experience.

It is also important to have a venue where you can express your questions, anxieties, fears, doubts. As you become more ill you will have many thoughts and feelings that you have never experienced before. Particularly thoughts and fears of death. It is inappropriate to talk to friends and family about these things are it will frighten them and they can do nothing to help you. Worse yet, they will give you advice. People with serious, life-threatening illness don't want medical advice (we have transplant teams for that), they want emotional support.

I have also found that talking to a therapist that is experienced working with people with serious illness or terminal illness helpful. It is important to be able to express these feelings otherwise many patients can become depressed and give up fighting when things can very difficult, This usually happens when our MELD scores get into the 20s-30s or when we are hospitalized for vomiting blood, HE coma and other life-threatening complication of advanced cirrhosis. Pain and suffering is part of liver transplant for most patients unfortunately. They sooner we accept that the better. Pretending to be normal and like other healthy people is a losing game. Once we accept our situation it is easier to deal with it. Fighting reality is a waste of valuable time and energy. I am not saying it is easy, but if we take it one day, one hour, one minute at a time we get through it. Remember none of us volunteered for this but since this has happened we deal with it as best we can, just like other challenges in life.

For example, I am glad that I just had a cancer treatment in hopes of getting rid of a tumor in my liver. At the same time I am very ill and in a lot of pain due to the treatment. I focus on getting rid of the tumor as my goal. The suffering is the price I must pay to rid myself of the cancer. Obviously it is a small price to pay logically speaking. Yet for the last 7 days it has difficult dealing with the pain. We must focus on the positive not the negative. Everyone has problems. Many have worse problems then we do. So it is best to keep things in perspective. Which is why a support group is so important. You will meet people way sicker than yourself (high MELD scores) and you will appreciate your ability to leave the hospital by being able to walk. Others aren't so fortunate.

Good luck!
Hector
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Thank you Hector.  I am going to the support group meeting tomorrow from 12 - 4 and will listen and learn.  I have spent a couple of days in the transplant area already and have met people who are in dire need of liver and are very sick.  I'm not kidding myself right now that I feel so well.  Know that might be a short term effect.  

I actually feel a sense of guilt when I am up there because as you know you get talking to everyone there and I am so open it is amazing what people tell me.  There are so many very ill people and even their support members say to me, are you sure you are ill?  You don't look like anyone else here does. I don't know what to say.

The psychologist said my attitude toward the illness and transplant was excellent.  She asked how I could be so calm and pragmatic.  I told her. I have a virus and now cirrhosis...I have tried everything that has been given to me and will keep trying until the end.  Which is true but at same time have dozens of questions that wouldn't necessarily be directed to her.  Even as hyper as I can be when you meet me in person I am very observant, polite, reassuring, smiling person.  I'm the one listening, always taking mental or paper notes. It's at the days end when it becomes quiet and there is no one to focus on that questions start pouring in.

I know that death is the only thing we are assured when we are born.  It's what we do with our live in-between the beginning and end.  And I've always had a motto, "it is what it is" .... it's what you do about it.

I think about you Hector and how brave you are.  I am sad that you are in pain.  I actually was talking about you to the psychologist the other day...not be name of course....but about how inspirational you have been to me.  How brave. And how a help website was supportive.

While I have always thought of myself as fearless I have come to the realization that as I have aged I have to have every single fact on something before I act. Much different than the girl whose body arrived before her brain as a kid, teen and young adult rushing ahead with no thought.  

My Meld keeps getting lower.  It's 8 now. My weight is consistent.  I never lose weight. They have been telling me for the last 20 years I would lose weight.  Hasn't happened yet without me going on a diet of sorts.  I've learned the secret to water and mini meals. Won't eat fast food, fried or red meat, watch sodium, sugar & fats.  Eat a lot of veggies and fruit..  I am, food wise probably the healthiest I've ever been.

I know I am blessed...have always felt that I have a very tattered angel on my shoulder and for the last 4 years I have felt my sister's arms wrapped around me.  I think her dying from bariatric surgery at 49 from a clot 4 years ago has made me question every step I am taking.  

I am trying to focus on the positive.  Still will have a zillion questions though I always will as I am of curious nature.  I am the first one to say get over yourself....there are so many other people worse off. This is so true.  I sat next to a young 19 year old the other day. Bright yellow. Beautiful young man wrapped in a blanket in his wheelchair.  So weak. His Dad started talking to me. His son had a transplant a few weeks ago.  He was a college football player, 1st year, got slammed in liver quad area.  Several months of extreme pain led to him having to be transplanted.  As I talked to his Dad he reached out his hand and held my hand.  His mother had died 3 years ago in car accident.  As his Dad wheeled him off when they called his name, there wasn't a dry eye in that waiting room.  So yes, I am blessed to have lived a good live.  

Hector I want you not to be in pain. I wish I lived there and I'd come and teach you transcendental mediation and touch healing I learned living in India. One of family uncle's was a guru who was amazing.  And yes I do yoga.  LOL.  

Thank you for your advice.  It is very much appreciated.  You are right about support people.  And family, they just do not get it or understand.  Don't think the realization of how ill I am will really hit them until they see me laid out in ICU.  I had thought of asking for a group of people on here who have had transplants, and those who are ESLD, I want to know their experiences.  

Thank you again Hector.  Will focus on you for the next few days...please be pain free.  Hang in.  
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"I actually feel a sense of guilt"
I am not saying you shouldn't feel what you feel but look at it as an opportunity to help others that are less fortunate. I hear that all the time or I used to when last year I was told I was the ideal transplant patients. Ooops what happened? I went from ideal to untransplantable in a few months. But that is more an issue with liver cancer than liver disease which is the majority of people you will see. By the time we looking like liver failure folks we only have a few months to live typically.

There are so many very ill people and even their support members say to me, are you sure you are ill?  
Frankly I don't know anybody who knows anything about liver transplant that would say such a thing. It is rude, insulting and just plain insensitive. They must be newbies to transplant. Do they all wear stickers saying "My Name is xxx. I have a MELD score of XX"? Not likely! Medical issues are private unless we chose to share them. Unfortunately they are many ignorant people in the liver disease community as there are in the hep C community.

MELD scores very all the time just like the blood levels they are based on.
What is the minimum MELD score that you need to have to be listed. Here it is 15. You are still well compensated. Weight lose occurs after a patient becomes decompensated. Compensated cirrhosis typical has no side effects or complications that are obvious just my looking at someone. It scans, biopsy that show what is happening internally the is more to the point. Remember a normal MELD score is 6 and goes up to 40 even though some patients can have MELD score over 40 it is rounded off to 40.

I am fine the treatment pain has stopped. Now I now have 24x7 nausea and weakness without an appetite. All typical side effects for me post TACE treatment. This is my 4th treatment so it is nothing I can't handle especially if it destroys my tumor! Not fun but I take it one day at a time.

Take care. Time to hit the hay...
Ciao.
Hector
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Thank you Hector...you hit the nail on the head.  You'd be shocked to know that the social worker asked me...now how did you get HCV? just took a deep breath and responded calmly that there were dozens of possibilities someone could get this over 6 decades and that is a disease that can be dormant in your system. Someone else told me she was probably just testing my reaction.  Don't know.  

You'll find this funny...I told her I had been an EMT, I wasn't a IV drug user, had had only one transfusion in my life and that was when I was 15 and I had my tonsils out and when I said that she immediately said... "ah ha! that was probably it".   Lord help us.This is the liver transplant social worker specialist.

My meld is now 8 - 10 which is very frustrating to my hepatologist.  Not doing anything different.  With decompensated liver, Stage 4 you think it would be higher but my HCV viral load bottoms out and spikes like that too. They have never had a good answer for that,  I can go from 4M to 6 months later trace amounts.  Then back up a year later.  Like a yo-yo.  And I am that 5% that gains weight.  Swear I could have bongo-bongo flu and gain 10#'s. I'm not holding fluids. Frustrating. The tech Monday said wow you don't look that heavy are you solid muscle or what?  He had me get on and off the scale twice and then go down the hall to another scale. He said he was sorry but I look so small but I must be solid muscle.  From what the liver transplant nurse showed us that your blood type, height and weight play into receiving a donor liver. But is also the reason I keep saying, are you sure my liver is decompensated?

The liver transplant nurse said that they have 96% success rate of success and  that right now there are 17,000 on the list.

That bio-tech lab out in California need to perfect making body parts and move on from the ear to internal parts.  Pretty amazing stuff.  How do you feel about stem cell research and the liver and cancer?

That is awful being nauseous 24/7.  You don't want to do anything.  I am so surprised you even have the energy to respond to us but your dedication to this cause is overwhelming.  And you are right...I get through this...I am retired...I could become an advocate with a little more education on the subject and help other people.

What can you eat when you can eat?  Are you on fluids only?  Take care Hector. I am going to focus on your nausea,  Know that sounds stupid but when I studied transcendental mediation in India that taught me to lay flat, clear my mind, take the pain, visualize it, make it into a form and using my hands touch the pained area, mentally grab the visualization, move it to my hands and throw it from my body. Repeat and repeat.  And they taught me how to remove myself from my physical being.  This always makes me seems like a whack-a-do. Some of things I saw were pretty amazing.

Know this all sounds strange and I am a bit out of practice.  Need to find a guru around here to practice with.  But it works.  Had a inch and a half ankle stress fracture set without any medication after they allowed me to mentally remove me from me.  The doctor was instructed not to say my name and when he was done to tap me 3 times on my shoulder, He made me sign all sorts of forms.  And I gave him permission if things went south he could set it the old fashion way.  He said he wouldn't have believed it if it hadn't happened to him.  I rarely tell too many people about this as they think I am nuts if I start talking about it.  

Discovery Health had a two hour show on this years ago...not transcendental  but the mind and how it control aspects of your health. Mind over matter.  But I don't think I'm going to get out of this one quite that easy am I.  

I am going to one of the support group meetings today.  It should be interesting,  I am going to read up on TACE and understand what you are having to go through better.  

Hope you have a better day.....am thinking about you....Summer

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