see the liver transplant team for a decision in 10 days, other options?

[Alive33]

I see the liver transplant team for a decision in 10 days if they say im not a candidate what other options are they likely to recommend?

I have so many problems but the HCV is destroying my liver and if they cant fix that than I dont know what else there is.?

I cannot receive treatment im not eligible it will probably killl me they think. I have genotype 2 I believe my platelets are low usually 30 something. Im about 90kg 6ft I get edema but mainly in my ankles not my stomach, I exercise weekly but i get so short of breath now that it makes it feel twice the effort...

Do you know what could be causing me to become short of breath is it related to my liver,? I asked the Dr but they said lets see if we can transplant your liver first before we worry about it. I dont smoke I havent drank in 3 yrs my oxygen level is about 94 any ideas would be greatly appreciated I know its hard going through it yourself also but any help would be real nice

TY.

[Alive33]

I saw them and they said my numbers were on the up this time before they were on the meld now they are outside the meld score for a transplant. They cant treat me and as I have Hep C it will get worse one day. So they said come back in 3 months.

They said that the surgeoon believes the surgery will be complicated meaning it will take longer im not sure how long it takes but longer than the normal time to do. Thats means the anesthetist has to work to keep me alive longer or it may mean its a bit risky anyway they are still talking about it. If they put me on the list they think it wouldnt be good at this stage while im still better than most. They think that because the surgery may take a bit of work and there could be complications, and if they need to do more surgery there could be risk of infection. They say i will be very sick after the surgery and that i probably will spend a long time in hospital how long they cant say but guess it could be 6 months even, some people stay there a year. The other thing they said is even if I am on parr with others regardless of my other health issues 1 in 10 dont make it, anyway I know that it will just be more waiting so i decided im sick of flying im just going to move to the city were i can catch the bus instead.

oh what i meant by 5 years longer is if I have a transplant and it helps i might get that option otherwise who knows , they say once you get worse things go down hill pretty fast anyway I just try to do as much as possible with the time ive got, id like to make it as something for others but i doubt that i have enough time for that  so i just make it for myself as best as possible. well ill tell you how the next one goes, I hope you still around and if youre not here I hope youre somewhere you want to be..

thanks.

[ceanothus]

I tried to reply to your post late last night but was called away before I could finish. I'm sort of glad I wasn't able to finish a reply, as you've gotten far better advice from some of our resident experts here than anything I could have told you. I'm just chiming in now to offer my sympathy and to add that I hope you can make good use of Hector's excellent advice. I guess I have one other thing I can add, and that is that problems with getting out of breath easily are frequently part of heart disease, and can be precipitated by fluid building up in the lungs and around the heart. A number of people close to me have experienced that. In your case I don't know whether it is part of an independent heart problem, or related to fluid buildup from the liver disease - your doctors will have to clarify that for you. Best wishes.

[orphanedhawk]

Hi,
I can't give you any more or better information than Hector.
But I can tell you I had a transplant in 2009, was genotype 2, did the hep C treatment last winter and am now hep C free.

My only advice is to try and keep active, take several walks daily. Do some mild stretching. Walking will help with the edema as well as being good for the rest of your body as well.

Best of luck~
OH

[HectorSF]

As you may know, concurrent cardio and pulmonary issues complicates liver transplant. But is depends upon the exact nature of the cardio issues and the expertise and policies of a particular transplant center whether they will still list a patient. For example, I just met a man who was turned down for a transplant in the state of Oregon where he lives because he has a stent in his heart. The Oregon center then referred him to my center here in California where we do more difficult cases. He is now listed and waiting for a transplant.

I am sorry that you are in a difficult situation and you fear the worse. I have been in a similar situation myself when I had multiple liver tumors one right after another and my MELD score was too low to get a transplant. I was worried that my liver cancer was going to kill me before I ever got close to having a high enough MELD score to get a transplant. As of today I have been living for the last 15 months with liver cancer because my MELD score is still too low to receive a transplant. It is no easy task and I do worry that any day could be my last. But I have come to terms with the possibility of my own death. I have said all the things I needed to say to my friends and family, I have planned how I want to die and what I want done with my body. I try to live each day as if it is my last. I am at peace with my own death if that is what happens. This is something I needed to face up too and while every difficult, I feel better that I have done it. I an not saying this is something you need to worry about, but to let you know we have more control over what happens to you than most people realize. Even how we die if it comes to that. Remember we all all going to die at some time. Most people are unprepared for it. I have thought about it a lot and discussed it with a therapist that has worked with many dying patients. I feel better about having done it and not leaving a mess for others to clean up or not have them know what I want. My sister will carry out my wishes. This whole process have been a learning experience for me and brought me closer to my family and friends. We always have a choice of how we respond to our ill. We can be victims and feel angry and sad or we can use it as a challenge to overcome and to fight to the end. As a famous American philosophers has said "It ain't over, 'til its over".

Let me make it clear that I am NOT planning on dying anytime soon if I can help it. I am full of hope. Not magical thinking that I can't die and that I am immortal. All I am saying is I personally must be realistic and know I can die and so I am prepared as anyone can be for that situation. You must find what works with your own values and lifestyle.

Sorry to get so heavy about it here where the topic is hep C but in some cases it can lead to transplant and or death. Luckily most people do not have to deal with the ultimate consequence of hep C causing liver failure or liver cancer.

If you can't take a beta-blocker than then they need to monitor more closely your varices. They can perform "banding" as a preventative measure. I didn't mean to imply that there is only one solution for managing a complication of cirrhosis.

As for your "problems"
Hep C
Haemochromatosis
Thrombocytopenia
Cirrhosis
Splenomegaly
Osephageal varices

These are all the related to your liver disease and all people with advanced cirrhosis have then except for Haemochromatosis which is hereditary illness. I have them all (except haemochromatosis) and have had them since 2007 at least.

"but without the answers I dont know what im dealing with or how."
If you want answers then you have you have multiple ways of getting them.
1. Do your own research
2. Rely on your doctors and get all your questions answered
3. A combination of both.
Every patient has this choice. It is up to you to chose the most appropriate means of getting answers that match with your beliefs, values, personality and lifestyle.

I have no experience or knowledge of cardio and pulmonary diseases.Your specialist doctors are you best source of information about your condition's and diseases as diseases manifest differently in each individual.

" I want to be alive without the side effects of HCV for at least another 5-10 yrs 15 would be a blessing. "
Maybe I shouldn't say this but people with cirrhosis and portal hypertension (splenomegaly, varices, thrombocytopenia) that get listed for a transplant don't typically remain on a transplant list for 10-15 years and remain compensated (asymptomatic).
Simply put, if your liver disease in so minimal then you don't need a transplant and won't be listed.
There are not enough donor livers available as it is. That is why only the sickest patients get their transplants first.
In the US a person needs to have a MELD score of at list 15 to even be listed for transplant. For the vast majority of people with a MELD score of 15 they unfortunately are not going to have 10-15 years of compensated cirrhosis. They will usually decompensate in a few years and experience the debilitating and life-threatening complications of End-Stage Liver Disease.

What is MELD? How will it be used?

The Model for End-Stage Liver Disease (MELD) system was implemented in the US on February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.

Lab values used in the MELD calculation:

* Bilirubin, which measures how effectively the liver excretes bile;
* INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
* Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.

What is the average MELD score for a patient undergoing transplant?

Currently, the average MELD score for a patient undergoing a liver transplant is 20 nationally (in the US). The average MELD score for liver transplant patients in the Northern California region (where I am) varies from 26-33, depending on blood type.

The average waiting time for a patient to receive a liver in our region, once a patient is placed on the UNOS waiting list, is 12-36 months. This waiting time may be very short for a patient with very high MELD scores and especially those with acute liver failure.

Waiting time varies according to blood type, e.g. patients with O blood type wait longer on average, and patients with B, A & AB blood type wait a shorter period of time. The severity of a patient’s liver disease and any contributing medical illnesses, such as kidney failure and/or liver cancer, may result in a patient receiving a higher MELD score. As a patient’s MELD score increases, the priority to receive a liver transplant increases. If a patient’s condition improves, and the MELD score decreases, the priority to receive a liver transplant decreases.

Transplant physicians, nurses and social workers cannot accurately predict when a donor liver will become available for an individual patient. The availability of donors is too variable and the lists at the local transplant centers can fluctuate every day.

Best of luck with your listing!
Hector

[Alive33]

I cant take beta blockers because of my heart rate
this is what makes everything so difficult to make a decison I have been going for prob over a year now  anyway this is all my problems:

Great vessel transposition - surgically repaired
Bradycardia
Pacemaker
Infective endocarditis - pacemaker removal (wont be replaced)
Hep C
Meliodosis
Haemochromatosis
Chronic pulmonary embolism
Pulmonary Hypertension
Thrombocytopenia
Cirrhosis
Splenomegaly
Osephageal varices

and they say anxiety but I dont really have that but if i did I could understand but I feel more ok well thats how it is deal with it. but without the answers I dont know what im dealing with or how. I will see what they say I hope its positive, I want to be alive without the side effects of HCV for at least another 5-10 yrs 15 would be a blessing.

[HectorSF]

First, wait for the decision. Waiting is hard but try not to anticipated that you won't be listed. Why conjure up disappointment when it hasn't happened yet. It is just added stress that you don't need. None of us can predict the future try to keep yourself busy with other things now. It is out of your hands right now so try to have hope and let what is gonna happen, happen.

That said, if you are denied being listed you will receive a written paper saying WHY you are not qualified. It could be something you can rectify. Don't give up. With End-Stage disease you have to fight sometimes to get the services you need. I have had friends who were initially not qualified that become qualified and got transplants. Believe in your ability to make things happen for yourself.

If your platelet count is in the 30s it is unfortunately too late to treat your hepatitis at this point. It is too dangerous and you couldn't do treatment for 48 weeks with such a low platelet count. You probably have others blood issues that would also prevent treatment as well. A platelet count that low indicates serious portal hypertension which would mean you probably also have varices that need to be managed.

Ask you hepatologist about the exercise you do. You should not strain yourself when exercising as it can cause varices to rupture and bleed which can be a life-threatening condition. A beta-blocker such as Nadolol can lower portal hypertension and prevent that first bleed. Again talk to your doctor.

"Edema is observable swelling from fluid accumulation in body tissues. Edema most commonly occurs in the feet and legs, where it is referred to as peripheral edema. The swelling is the result of the accumulation of excess fluid under the skin in the spaces within the tissues. All tissues of the body are made up of cells and connective tissues that hold the cells together. This connective tissue around the cells and blood vessels is known as the interstitium. Most of the body's fluids that are found outside of the cells are normally stored in two spaces; the blood vessels (as the "liquid" or serum portion of your blood) and the interstitial spaces (not within the cells). In various diseases, excess fluid can accumulate in either one or both of these compartments.

What is pitting edema and how does it differ from non-pitting edema?

Pitting edema can be demonstrated by applying pressure to the swollen area by depressing the skin with a finger. If the pressing causes an indentation that persists for some time after the release of the pressure, the edema is referred to as pitting edema. Any form of pressure, such as from the elastic in socks, can induce pitting with this type of edema.

In non-pitting edema, which usually affects the legs or arms, pressure that is applied to the skin does not result in a persistent indentation.

Why do patients with liver disease develop ascites and edema?

1. increased pressure in the vein system that carries blood from the stomach, intestines, and spleen to the liver (portal hypertension); and

2. a low level of the protein albumin in the blood (hypoalbuminemia). Albumin, which is the predominant protein in the blood and which helps maintain blood volume, is reduced in cirrhosis primarily because the damaged liver is not able to produce enough of it.

Other consequences of portal hypertension include dilated veins in the esophagus (varices), prominent veins on the abdomen, and an enlarged spleen. Each of these conditions is due primarily to the increased pressure and accumulation of blood and excess fluid in the abdominal blood vessels. The fluid of ascites can be removed from the abdominal cavity by using a syringe and a long needle, a procedure called paracentesis.

Patients experiencing a disturbance in their ability to normally excrete salt may need to either be placed on a diet limited in salt and/or given diuretic medications (water pills)."

You should be on a low sodium diet. Less than 2000 mg per day. Do not add salt to any foods and avoid processed food and restaurant food as they have large amounts of sodium. Your edema will probably disappear after a week or two. If not then you should also be taking diuretics. Your hepatologist will know all this.

Fatigue is a complex symptom that encompasses a range of complaints including malaise, exhaustion, lethargy, and loss of motivation and social interest. Fatigue does constitute the most common complaint of persons with advanced cirrhosis. Any physician who manages patients with chronic liver disease will acknowledge the presence of fatigue in this patient population.
Shortness of breath and extreme fatigue commonly experienced complications of End-Stage Liver Disease. Feeling weak and like you are always running on empty is common. Maintain so exercise routine is helpful to maintaining your health. Just walking every day is better than lying around as you will become weaker that less you do. But don't over do it or you will feel worse. In time you will learn to listen to your body and know what you can and cannot do. As you liver disease gets progressively worse over time you will experience many more complications of ESLD. You should familiarize yourself with them and the treatments that are used to manage them.

This is a good overview.
"Cirrhosis and Chronic Liver Failure:"
http://www.aafp.org/afp/2006/0901/p756.html

I have had cirrhosis since at least 2007. End-Stage Liver Disease for a number of years and also have had liver cancer for the last 15 months. I am listed at two transplant centers and hope to get a transplant within the next 6 months.


Let us know when the listing decision is made.
Best of luck to you!!!
Hector

[Dee1956]

Good Morning, I am sorry to hear of your news, other more knowledgeable people will be here soon, it is pretty early here on the East Coast, someone on the West Coast may still be up
I just wanted to say that others will be more than happy to share their experiences with you.
Is it possible that along with the low platelets that you have low HGB?  When I treated and the HGB went low I had a very hard time breathing
Hang in there
Dee