Don't understand

I am new to this site and have no idea what the numbers mean.
My son was put on the liver transplant list. What does that mean?
Is he gonna die?
If someone can give me some info on this, I would be more than grateful.
Thanks in advance
Meg

Typically being put on a transplant list means you are very ill. As Ziff there said a transplant changes the picture. It's hard to respond without knowing all the details. Your son may not be ill enough for a transplant at this point but he qualified for the list. That means he passed some pretty rigorous testing. There are some who don't pass those tests for one reason or the other. Being listed is a positive thing. It is a chance at life that he might not have without a transplant.

Welcome to our forum!!

Sandia

Ziff he has hepatitis c

Hi Syx,
Thanks for the reply.
He has never been a drinker.
No confusion that I have noticed.
His ankles seem to swell a little
No abdominal swelling that I can see.
No bleeding, but he does seem drained.
He goes for a liver bio on Tuesday
The doctors just seem to be throwing out numbers that I don,t understand.

Hi Meg,

Hope we can help you with the dreaded learning curve.

Sounds like your son has a lot of fatigue, as would be expected. It is overwhelming for someone that has liver disease.

Could you tell us which transplant center your son is listed with, please? Different regions transplant at lower MELD score, so we may be able to help with some of those questions. I am assuming your son had his evaluation already and is approved for the list at this point.

As for the numbers. Your son will have Hep C and a genotype number. (my husband is a 3a). Also, he will have a stage and grade on his cirrhosis. My husband is stage 4.

And there are blood numbers. Lots of them. Platelets, bili, creatinin, INR...and many more. Your son also will have some numbers doctors speak of when speaking about Hep C....viral load number, ALT, AST. So there are numbers galore. You will come to understand these if you part of his care team.

If you are in the USA, has your son applied for SSD yet? My husband became unable to work about 3 years ago. It happens pretty fast at times, so good to get the paperwork started.

Hang in there. There is much to absorb in the beginning. It is so difficult to watch those you love go through this. Big Hugs....themiz

Meg,

Welcome to the Hepatitis forum. We are patients and caregivers and can help with support along the way.

You sound so scared...will he die? you asked.

Well, the answer is complicated. People with Hep C for a long time can get very sick and some do die.

More often those who die did not get quick adequate care and don't work with a hospital transplant team.

The fact that he has been listed, means that his team feels that he is, indeed, sick, maybe very sick, but he is one of the ones who would do well after a transplant surgery.

The trick now will be to be the most sick person in his blood group when a donor liver becomes available before he gets too sick to endure the surgery.

The folks who ARE transplanted have a very HIGH survival rate...they don't take chances with organs...there are too few of them.

If I were you I would be going at this another way...since he has Hep C, and since those who clear the virus (Hep C is a virus) actually do way better after transplant than those who are transplanted still having the virus in their blood!!!!

In the past several months meds have been FDA approved that are having amazing results in clearing the virus. More and more insurance companies are agreeing to pay for the meds, which are very expensive. See if they think he is well enough for a Hep C treatment regimen (3 months usually).

A Hep C patient has a lot of symptoms some of which you are seeing:

Fatigue
Brain Fog
Hepatic Encephalopathy (too much ammonia in the blood) that can cause confusion, coma, even death. Some with HE have episodes of rage and anger.
Edema in legs and or belly
Jaundice (yellow skin)
Nausea
More fatigue
Muscle wasting (loss of muscle)
Mixed up day and nighttime sleep patterns
Heptocellular Carcinoma

My partner, who was transplanted almost 3 years ago needed help with his daily grooming, organizing his meds, and meal planning and preparation. He was often grumpy with me, though I was trying to help him all the time. Looking back on the year before transplant, he had amnesia...he does not remember acting crazy and confused and angry...does not remember that his family and friends came her to say good by...just in case. Etc.

Mike had a MELD (Model of Endstage Liver Disease) score of about 17 for a while. But then a really bad/good thing happened. They found a small cancer tumor in his liver (Hepto Cellular Carcinoma). Gosh, we thought, he is doomed. But not so. When they found that tumor they gave him extra MELD points, so he jumped to 22 and had is transplant very soon after that jump! If a person's tumor(s) get large quick, they do some cancer treatments that bring them down to under 5 cm and they still get the higher MELD score. So for Mike the bad diagnosis became his life saver!

I think Barry pointed you to the resources folder at the top of this forum. Lots of good information there. Like the rest of us, you need a "degree" in liver disease in a short time -- learn all you can.

Make sure you ask the doctors for copies of all the tests and scans and such. Start a folder. Put the material in there from the oldest in back to the newest in front. Sometimes when we go to a specialist (say a consulting oncologist or nephrologist) or clinic, the residents or doctors don't have the information at their finger tips and your notebook will be a great aid for them.

Sometimes I think the most informed patients and patient advocates get the best treatment for their loved ones. Learn every thing you can.

Ask questions, we will try to help you.

Hugs,

ML

Thank u guys for all the responses, but I am not sure I can go through this. My worst nightmare has always been losing a child. I sit in my room and cry most of the time,
The only hing I have now are people praying and you guys. Thank god I found this forum.
For the person who ask where the transplant center is, it is at uk in ky..
I will keep you posted about the bio. Please pray for my son and me.
God bless you all
Meg

Another thing to consider is this. MELD score can be higher due to 1 number being somewhat high. How is his overall health? I am not talking about the fact that we know he has hep C and lab values are out of norm. But how does he feel, besides being tired can he function normally. My MELD hovers around a 12. HOwever, even though it hovers at a 12 I am relatively healthy. I do not have hep C, but with treatments out there your son has a good chance to clear the virus in the near future. DOes he feel good besides the fatigue. If he can accept the fact that he has cirrhosis and eat healthy he could and if the virus is cleared he could live a long time with his current liver. Back the the lab values though, my INR will always be off, it sits at around a 1.4. This is slightly elevated, however the rest of my labs are normal range or near normal. My doctors feel due to change in diet and no alcohol that I could live a long life with this liver as the damage has stopped progressing.

Is my liver sick, of course it is. But if he accepts this and moves on living healthy and is able to stop what is causing the damage (hep C) there is always a chance he could do good. With advanced cirrhosis and not having HE and bleeds from the throat is called being compensated. YOu can go in and out of being compensated.

Stay positive, and realize this is not a death sentence. Whether he is able to live with the function he has now or get a transplant, medicine has advanced far enough that with a positive outlook you can live a long normal life.

Meg.. those are not the only resources you have.. you do have inner resources and it is painful right now to reach them because they are at the out reaches of your being. You probably need to see a counselor or somebody if you continue to spiral with depression. You have your hands full. You are facing your worse fears but Meg... your son is LISTED!! Many never get that far!! This is a positive thing!! We have many on this forum who have had transplants. There are treatments for Hep C now. There is great hope. So while this feels overwhelming because it is triggering your worse fears... your son's situation is hopeful .. very hopeful..

Your mental health is suffering. Take care of yourself. It is not easy to be a caretaker. You may need to look for people to provide you respite. Take care of you Meg. I say this because I've been there. It was the toughest thing I ever did and yes I felt the way you are right now. I had to find the time for myself in the situation..


My thoughts and prayers are with you and your son... and grand son.

Sandia

Meg1955 my heart goes out to you for what you are facing. I'm so glad you found this forum. It has been my life line as I hope it will be yours.

If you hear nothing else, hear what these folks are telling you: there are new drugs available now that are essentially cures for Hep C. As my hepatologist told me this is the best time to have Hep C (oddly true) - they're all pretty excited about the new cures - get a hepatologist that is tops in his/her field if you can - get one that KNOWS and communicates.

As Ziffle is living testimony, you can live with a damaged liver but it takes tremendously hard work - thankfully he doesn't have Hep C but he has survived against the odds. I've had to dig deeper than I ever thought I could and I'm only at Meld 10.

For your own peace of mind, arm yourself with knowledge. It's a steep learning curve. You will be glad you did. Ask as many questions as you can. If your son will let you be involved with his treatment you can relieve your worrying with knowledge.

I am listed at a Meld of 10 ... my health fluctuates ... and if I could be I would be on Sovaldi which clears the virus really quickly compared to the old gold standard treatments with interferon, which had lots of side effects. I've been on old treatments 4 times hoping for a cure ... and survived debilitating side effects of which some were permanent. I don't regret any of it. Come hell or high water I will get Sovaldi some day some how (it's a question of funding for me).

I've been decompensated (bleed, HE, edema). BUT those are manageable symptoms Nadolol controls the esophageal bleeds, Lactulose and Xifaxin (if you can get it) controls the more frustrating hepatic encephalopathy (HE) and diuretics exercise and diet control the edema. If I could get virus free I'd be thankful living the rest of my life with my limping liver. Even though it was decompensated at one point -I'm not right now. If I can beat this thing without a transplant then that is exactly what I intend to do. But like Sandie said, being listed is a very positive outcome, too. There is hope all around.

It appears your son will have to take a much more active role in his treatment and get CURIOUS about his condition. His ability to cope will greatly increase if he is his own advocate. At some point he will have to make a conscious choice to fight what may be the toughest fight of his life. But Hep C is NOT the death sentence it once was.

I share a strong faith in God also... and will pray for both you and your son. Combining faith with action creates miracles. Look for miracles, arm yourself with knowledge and take great hope in the new cures.

Keep us posted and I hope the biopsy goes well.

God bless all you guys for the support.
Today all I can see is a big mountain that I can't climb.
My son has been in bed for 3 days and now i'm dealing with
a sick grandson
God have mercy on me and my family

When I first got diagnosed with cirrhosis I did not keep things from my wife and family but filtered what they were told. I have always been the main support in my family and I did not want people to over react. So over time I told them more.

Could your son be doing this, trying to remain strong so you do not breakdown. I think maybe just sitting him down and talking about things and letting him know you want to be there. Realize being on the list and if he gets a transplant he will need your help as support and caregiver. I think others who have been through the transplant process can attest to this.

Remain positive, if he gets one of the new treatments he might never need a transplant. Even if he does if hep C is cleared recovery post transplant will be that much easier.

We are here to provide support, you can do it.

Okay, Meg...You have to pull yourself together, it's not about you. I don't want to sound harsh, but let me tell you a quick story.

I always said I could never do well in an emergency. But one day my mother flat-lined at the kitchen table...you can't get any more dire than that. I quickly, with the help of hubby, eased her to the floor, called 911. Although my CPR certification was like 12 years before, I performed CPR right up until the EMT's arrived. I then proceeded to have my breakdown while they zapped my mom continuallly until they got a heartbeat. She survived.

Just put those gloomy thoughts right out of your head, stop with the pity party. Your focus should be on your son, and in turn, his son. Your grandson can play a huge role in taking care of his dad (assuming that the grandson you live with is your sick son's son). You will likely need all the help you can get. You don't mention your son's age. Also it would help to know what medications he is on.

Do you go to appointments with your son? If so, you need to write a list of questions to ask when you get there. I hope he is seeing a hepatologist, rather than a GP or Gastro doctor. Once you get that biopsy done, you will know much more. If your son doesn't share with you, you need to have a big talk with him and any other people that may assist in his care. The transplant team does not look favorably on a patient who has no caregiver in place to support the listee. Although a couple of people here have had to go it alone, they have had to lie about having a caregiver. The team knows that transplant success depends a lot on a supportive family. And they expect to see caregivers at the classes and at all appointments.

Important things to do while on the TP list:

Stay off alcohol, drugs and tobacco of any kind. He will be thrown off the list if, say, he shows alcohol in his bloodwork, so be careful with ANYTHING that contains alcohol or unprescribed prescription drugs.

Adhere to a low sodium diet, very low. The goal is 1 gram (1000 mg) per day. Fresh fruits, vegetables, chicken, fish are a good start. You would be very surprised how much sodium is in 2 slices of bread! And anything canned is going to have a ton of sodium, same with deli meats usually. No processed foods at all is best and for seasonings many use Mrs Dash and herbs instead. Eating in restaurants is very tricky, as chefs are not nutritionists generally and have no clue what low sodium really means. READ ALL LABELS.

As Mamalama said, start keeping a file of all his test results, labs, appointments kept, etc. So many times you will be referring back to these and you will save a lot of time by doing so. And yes, get started on applying for SS as this is considered a "TERMINAL DISEASE" and you should use that nomenclature I'm told.

Unfortunately, without treatment, your son will become a lot sicker, and need almost 'round the clock care. He should have a living will, Power of Atty papers, etc. in place while he is alert and lucid. Conditions can change rapidly with this disease.

Now the good news, there has never been a more promising and rewarding time in the history of this terrible disease. The new treatment that just came out has huge success rates in trials and beyond. So there is SO MUCH more hope now. My brother, after his transplant, had his hepatitis come raging back. Now he is undetectable!

I have been through all this and I know you can pull yourself together and be the strong mom and grandmom for now, you can have your breakdown later, I promise :)

All the best to you and your family,
Mae