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i am 39 years old, and In October of 2013 I was diagnosed with Autoimmune Hep, Hep C, Fatty Liver Disease, Stage 4 Cirrhosis, and type 2 diabetes. I am scheduled for an upper endoscopy in May to check for varices because I am not digesting food and have a large knot at the top of my abdomen. I am awaiting approval from my insurance to start the Sovaldi since my Hep says that my liver's condition will not handle the interferon. Which is only the beginning then we have to try to treat the auto immune, but again not sure if my liver will handle the prednisone. I have lost 43 lbs but cannot even be placed on the transplant list until i have the HEP C and Autoimmune Hep under control. I am so tired and wonder if its even worth all of the money to fight this? I don't want to leave my children with a lot of medical bills.
i thought i had it rough with MS(auto immune) and cirrhosis from hep c. most auto immune issues require prednisone to knock down inflamation and lower your immune response. when i needed prednisone my dr sent me for infusions of solumedrol. liquid prednisone. when you by pass the gi tract it is easier on your liver. your taking the steps you need to reduce your fatty liver, start sovaldi tx, and hopeully start start steroids when possible.
i want to wish you all the luck possible
i want to wish you all the luck possible
COMMUNITY LEADER
You say you have Autoimmune Hep, Hep C, Fatty Liver Disease, Stage 4 Cirrhosis, and type 2 diabetes.
This is a very unfortunate combination of issues. Autoimmune Hep, Hep C, Fatty Liver Disease all contributing to your liver disease.
Hopefully your hepatologist by treating your hep C can slow the progression of your cirrhosis while trying to manage your other illness as well.
"...I am scheduled for an upper endoscopy in May to check for varices"
I hope you understand that varices have nothing to do with digesting food, correct? Varices are viewed using endoscopy to assess the extent of the varices and the need for treatment. People with lesser varices can be put on Nadolol to reduce the blood pressure on the veins and prevent them from bursting. If they are close to bursting They can be banded which will prevent the blood from flowing to the areas most at risk of bleeding. Varices only occur in patients with cirrhosis and portal hypertension which means the cirrhosis is complete and not "Early Cirrhosis" where there is none to little resistance to blood flow through the liver. Your hepatologist can explain this to you.
"I am not digesting food "
If you are not "digesting food" (I am not sure what you mean by this) taking oral medication would be issue too as the drugs are absorbed by the digestive track. So I don't understand what you mean by "a large knot at the top of my abdomen"? Maybe you mean obstructed? It your bowels were actually knotted and the blood supply cutoff that would be an emergency situation requiring immediate surgery.
"cannot even be placed on the transplant list until i have the HEP C and Autoimmune Hep under control"
That is not true as most people on liver transplant waiting-lists have hepatitis C that is "out of control". Meaning either they have failed all hep C treatments they have tried or their liver disease is too advanced (irreversible) to even start treatment as the risk is too high.
People that have not been able to manage their Autoimmune Hepatitis and have advanced liver disease as listed for transplant because if they don't get a transplant they will die as their liver continues to fail.
Please talk to your hepatologist about this as you don't seem to understand when people should be listed for transplant and what the process is.
Health Insurance and cost:
I am not sure what insurance you have. They should be paying the vast majority of all of your medical costs.
If you are disabled and no able to work you should be receiving Medicare or Medicare if your liver disease is so advanced that you may need a liver transplant. You should talk to your social worker at the Transplant Center. They can advise you on insurance coverage particularly if you may need a liver transplant at some point as medical care up to a transplant can be very expensive especially if you have to be hospitalized while waiting, which can happen as the liver fails. Transplant surgery and hospitalization can be many hundreds of thousands of dollars and you will need need testing and medications for the rest of your life.
While this can sound daunting, all of us liver transplant patients how been able to do it and so can you. It is best to get all of this "prep work" done in case your liver disease progresses and continue to get sicker. Then it will be more difficult to do.
I am sorry you have so much on your plate but it sound like your hepatologist is trying to manage all of your health conditions to keep your liver as healthy as possible for as long as possible.
Best of luck to you!
Hector
This is a very unfortunate combination of issues. Autoimmune Hep, Hep C, Fatty Liver Disease all contributing to your liver disease.
Hopefully your hepatologist by treating your hep C can slow the progression of your cirrhosis while trying to manage your other illness as well.
"...I am scheduled for an upper endoscopy in May to check for varices"
I hope you understand that varices have nothing to do with digesting food, correct? Varices are viewed using endoscopy to assess the extent of the varices and the need for treatment. People with lesser varices can be put on Nadolol to reduce the blood pressure on the veins and prevent them from bursting. If they are close to bursting They can be banded which will prevent the blood from flowing to the areas most at risk of bleeding. Varices only occur in patients with cirrhosis and portal hypertension which means the cirrhosis is complete and not "Early Cirrhosis" where there is none to little resistance to blood flow through the liver. Your hepatologist can explain this to you.
"I am not digesting food "
If you are not "digesting food" (I am not sure what you mean by this) taking oral medication would be issue too as the drugs are absorbed by the digestive track. So I don't understand what you mean by "a large knot at the top of my abdomen"? Maybe you mean obstructed? It your bowels were actually knotted and the blood supply cutoff that would be an emergency situation requiring immediate surgery.
"cannot even be placed on the transplant list until i have the HEP C and Autoimmune Hep under control"
That is not true as most people on liver transplant waiting-lists have hepatitis C that is "out of control". Meaning either they have failed all hep C treatments they have tried or their liver disease is too advanced (irreversible) to even start treatment as the risk is too high.
People that have not been able to manage their Autoimmune Hepatitis and have advanced liver disease as listed for transplant because if they don't get a transplant they will die as their liver continues to fail.
Please talk to your hepatologist about this as you don't seem to understand when people should be listed for transplant and what the process is.
Health Insurance and cost:
I am not sure what insurance you have. They should be paying the vast majority of all of your medical costs.
If you are disabled and no able to work you should be receiving Medicare or Medicare if your liver disease is so advanced that you may need a liver transplant. You should talk to your social worker at the Transplant Center. They can advise you on insurance coverage particularly if you may need a liver transplant at some point as medical care up to a transplant can be very expensive especially if you have to be hospitalized while waiting, which can happen as the liver fails. Transplant surgery and hospitalization can be many hundreds of thousands of dollars and you will need need testing and medications for the rest of your life.
While this can sound daunting, all of us liver transplant patients how been able to do it and so can you. It is best to get all of this "prep work" done in case your liver disease progresses and continue to get sicker. Then it will be more difficult to do.
I am sorry you have so much on your plate but it sound like your hepatologist is trying to manage all of your health conditions to keep your liver as healthy as possible for as long as possible.
Best of luck to you!
Hector
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