Aa
Please tell me what they will not answer
Hey all this is the first time I've ever spoke of this. If someone could shed some light on how long I have I would be so great full. My Diogenes is end stage liver disease cirohsis ascites my last drain was 2 weeks ago 8 litres was drained in radiology as an out patient I was meant to get fortnightly drains though I thought the fluid tabs were working after my fourth drain as an out patient I am 31 in the last 6 weeks I have had just over 4litres of fluid drained off my right lung twice first time being called code blue in radiology outpatients .ascites has been going on for 2 years never drawing less than 5 litres most was 12 litres any info appreciated
I agree it is really quiet here. As far as how long really there is no way to know assuming you don’t have any intervention to prevent further progression and how well you take care of your health. If you can stop the cause of your cirrhosis and take good care of your health by eating healthy, getting exercise as tolerated and as allowed by your doctor, and no alcohol or drugs you could experience some regression and live many years.
Really part of the answer of how long is up to you.
Do you know your meld score? This will give you an estimate of estimated risk of dying for the next 3 months. It is also how you are ranked on the transplant list.
“The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant. These models are for use by medical professionals”
Are you eligible for transplant? Are you willing to have a transplant? Are you seeing a hepatologist associated with a liver transplant center? Has your doctor discussed the option of transplant? A doctor like this would be best able to discuss all this with you.
I have had cirrhosis for 10.5 years now. I have had some esophageal varicies that needed banding back in 2012. I have a small amount of ascities and sole lower leg edema. I was taking spironolactone but stopped a couple of years ago.
The cause of my cirrhosis was Hepatitis c was cured 3 years ago. Even though I still have cirrhosis I am optimistic of living a normal life span and basically dying from something other than the complications of liver disease.
See your hepatologist they will be best able to guide you going forwards from here.
Really part of the answer of how long is up to you.
Do you know your meld score? This will give you an estimate of estimated risk of dying for the next 3 months. It is also how you are ranked on the transplant list.
“The Model for End-Stage Liver Disease (MELD) is a reliable measure of mortality risk in patients with end-stage liver disease. It is used as a disease severity index to help prioritize allocation of organs for transplant. These models are for use by medical professionals”
Are you eligible for transplant? Are you willing to have a transplant? Are you seeing a hepatologist associated with a liver transplant center? Has your doctor discussed the option of transplant? A doctor like this would be best able to discuss all this with you.
I have had cirrhosis for 10.5 years now. I have had some esophageal varicies that needed banding back in 2012. I have a small amount of ascities and sole lower leg edema. I was taking spironolactone but stopped a couple of years ago.
The cause of my cirrhosis was Hepatitis c was cured 3 years ago. Even though I still have cirrhosis I am optimistic of living a normal life span and basically dying from something other than the complications of liver disease.
See your hepatologist they will be best able to guide you going forwards from here.
2 Comments
Thanks for replying I refused a transplant I drank I caused this there are many more deserving than my self sounds weird but that gives me a little comfort in taking responsibility I was told my meld score was 39 every time I'm discharged from hospital I'm told they will organize support....?
Everyone is human we all have made mistakes you deserve to live as much as anyone.
What I found about MELD score interpretation odds of death in next 3 months.
40 71.3% mortality
30-39 52.6% mortality
20-29 19.6% mortality
10-19 6.0% mortality
9 or less 1.9% mortality
So a MELD of 39 means you have a 52.6% possibility of dying in the next 3 months.
I don’t know what organize support means have you asked?
But anyway if you are taking care of your liver have you asked if there is any chance you could improve or is your only option transplant? Really you could go on for a long time with a MELD of 39 or not there is really no way to know. MELD scores change all the time going up and down especially if you are following your doctors instructions. Having cirrhosis we both are at a higher risk of HCC (liver cancer) as a primary cancer. Are you having ultrasounds every 6 months to monitor for HCC? If we develop HCC.
Found this about liver cancer survival
Survival for all stages of liver cancer
For adults diagnosed with liver cancer in England:
around 36 out of 100 people (36%) will survive their cancer for 1 year or more after diagnosis
more than 12 in 100 people (more than 12%) will survive their cancer for 5 years or more after they are diagnosed
Most people who receive transplant have a MELD above 30 so based on this one criteria you are very eligible but many other factors are taken into account.
So anyway that is why they don’t know how much time you have if you refuse transplant. All there are is statistics but where you will fall in the statistics there is just no way to know
What I found about MELD score interpretation odds of death in next 3 months.
40 71.3% mortality
30-39 52.6% mortality
20-29 19.6% mortality
10-19 6.0% mortality
9 or less 1.9% mortality
So a MELD of 39 means you have a 52.6% possibility of dying in the next 3 months.
I don’t know what organize support means have you asked?
But anyway if you are taking care of your liver have you asked if there is any chance you could improve or is your only option transplant? Really you could go on for a long time with a MELD of 39 or not there is really no way to know. MELD scores change all the time going up and down especially if you are following your doctors instructions. Having cirrhosis we both are at a higher risk of HCC (liver cancer) as a primary cancer. Are you having ultrasounds every 6 months to monitor for HCC? If we develop HCC.
Found this about liver cancer survival
Survival for all stages of liver cancer
For adults diagnosed with liver cancer in England:
around 36 out of 100 people (36%) will survive their cancer for 1 year or more after diagnosis
more than 12 in 100 people (more than 12%) will survive their cancer for 5 years or more after they are diagnosed
Most people who receive transplant have a MELD above 30 so based on this one criteria you are very eligible but many other factors are taken into account.
So anyway that is why they don’t know how much time you have if you refuse transplant. All there are is statistics but where you will fall in the statistics there is just no way to know
Hi...not sure of the time left but there are quite a few groups on face book dedicated to cirrhosis.... and lots of info there...this site is a little quite. i am in 3 of them cirrhosis 411 cirrhosis support and another i forgot. Paula
1 Comments
Thank you I'll look in to it .
Have an Answer?
You are reading content posted in the Cirrhosis of the Liver Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
