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Hep-C, End Stage Liver, Where to now?
I have been diagnosed having hep C for some 25 years and did not know it, and stage four liver and type 2 diabetes about four years ago.
After several alpha-interferon treatments that have failed. My Dr., mainly his (P.A.) 95% of the time, whom has a heart and compassion the size of Texas, has told me I am at end stage now and to go ahead and and file for disability while I still have some quality time to share with my wife and get my affairs in order. This all after I injured my spine at work having herniated disc and some bulging. The stress of fatigue has been my main complaint through out the last about 2 years. And now more recently the back issues. I am now more unable to stay focused on whatever I am trying to get done. I find myself having memory loss more and more often. I sleep more and more at any hours am or pm. My goal is to see that my wife (age 59) whom is not able to fully physically care for much of the needs in regards to our affairs, is settled and has some assisted living in place in time. This is very difficult as I have never been a save for the future person, all my life, regretfully. I read about what I am going through and what is to come for me in due time. It seems as I read though the questions comments and answers, there is always someone else in much more advanced stages or have more severe health issues than myself. My Dr. and P.A. cant give me a time frame as to time left before the need to be on transplant list other than we keep testing the blood until that time comes. I see my abilities to function diminish ever so slightly month to month. I am having to keep reminding myself that there are still consequences for my decisions and actions that I have made in my life and press on being thankful for one more day of grace that has been granted me, to live and get those affairs in order. So now I ask my question, other than sleep and vitamins what else can I do to get more of my day back into my life.
After several alpha-interferon treatments that have failed. My Dr., mainly his (P.A.) 95% of the time, whom has a heart and compassion the size of Texas, has told me I am at end stage now and to go ahead and and file for disability while I still have some quality time to share with my wife and get my affairs in order. This all after I injured my spine at work having herniated disc and some bulging. The stress of fatigue has been my main complaint through out the last about 2 years. And now more recently the back issues. I am now more unable to stay focused on whatever I am trying to get done. I find myself having memory loss more and more often. I sleep more and more at any hours am or pm. My goal is to see that my wife (age 59) whom is not able to fully physically care for much of the needs in regards to our affairs, is settled and has some assisted living in place in time. This is very difficult as I have never been a save for the future person, all my life, regretfully. I read about what I am going through and what is to come for me in due time. It seems as I read though the questions comments and answers, there is always someone else in much more advanced stages or have more severe health issues than myself. My Dr. and P.A. cant give me a time frame as to time left before the need to be on transplant list other than we keep testing the blood until that time comes. I see my abilities to function diminish ever so slightly month to month. I am having to keep reminding myself that there are still consequences for my decisions and actions that I have made in my life and press on being thankful for one more day of grace that has been granted me, to live and get those affairs in order. So now I ask my question, other than sleep and vitamins what else can I do to get more of my day back into my life.
I too had hep C for over 20 years and had treatment for it twice. Both times the interferon did not work. Thus resulted in end stage liver disease and my Dr. told me to quit work, get on disability, and take the much needed rest my body needed to get me through the days ahead, I was on the list for a transplant for 2 years then I started bleeding out from my espohugus and was put in the hospital to stop the bleeding. My blood count was a 5 when I entered the hospital, 6 units of blood later my blood count was only a 8. I was in the hospital from Jan 4 to January 9 when the dr came into my room to tell me a liver had became available and I would be transplanted the next morning. So just hang in there. Things have a way of working out for the best. I am 2 yrs. post transplant and doing good.
I too had hep C for over 20 years and had treatment for it twice. Both times the interferon did not work. Thus resulted in end stage liver disease and my Dr. told me to quit work, get on disability, and take the much needed rest my body needed to get me through the days ahead, I was on the list for a transplant for 2 years then I started bleeding out from my espohugus and was put in the hospital to stop the bleeding. My blood count was a 5 when I entered the hospital, 6 units of blood later my blood count was only a 8. I was in the hospital from Jan 4 to January 9 when the dr came into my room to tell me a liver had became available and I would be transplanted the next morning. So just hang in there. Things have a way of working out for the best. I am 2 yrs. post transplant and doing good.
My husband has cirrhosis (not end stage) and was really going down hill until he started taking the supplements suggested by a Hepatitis Doctor/researcher. that came here to medhelp and gave us some help from time to time. He is known around here as HR. If you type Gauf in a search at the top,you can click his name on any of his past posts and his profile will come up. He has recorded the list of supplements that HR gave us and lots of other good information from HR too. It has made a world of difference in my husband and I shudder to think where we would have been right now without it. It took about 6 months to start really seeing a difference. By 8 months he was much, much better and is trying treatment again and adding Alinia to the mix. Gauf has info on Alinia too.
Late last summer my husbands labs were so bad that the PA told him not to expect to be able to treat again and very little hope was offered. By March his labs had improved to the point where they agreed he should try again adding the Alinia. We don't know yet if he is responding but should find out before long. There are others here taking HR's supplements too.
It hasn't been easy for us to afford all the supplements but considering how much theyve helped, they were worth every penny. We also made lots of dietary changes which included less meat and processed foods. Sugar seems to be especially stressful to a bad liver. HR had some dietary advice too which I think is also on Gauf's profile. His advice has been incredibly valuable to us.
Blessings,
Ev
Late last summer my husbands labs were so bad that the PA told him not to expect to be able to treat again and very little hope was offered. By March his labs had improved to the point where they agreed he should try again adding the Alinia. We don't know yet if he is responding but should find out before long. There are others here taking HR's supplements too.
It hasn't been easy for us to afford all the supplements but considering how much theyve helped, they were worth every penny. We also made lots of dietary changes which included less meat and processed foods. Sugar seems to be especially stressful to a bad liver. HR had some dietary advice too which I think is also on Gauf's profile. His advice has been incredibly valuable to us.
Blessings,
Ev
what you describe sounds like my dad. He hasnt said these things but I see it happening. His situation is so similar to yours. Honestly I think that anything could happen. You are hear now so live now. time measures life in years, but it's the life in those years that you need to worry about. Like I said my dad has hep c not me but from what I think over the years in your case 25 it seems to sort of live with you. When he did his last treatment it nearly killed the virus but him as well. He was in a lot of trouble and had to take him off of it. the whole time spent on the treatment seemed like a waste because it certianlly was not fun for him he was in constant agony and depression. The VA is talking about Vertexcomming soon (it is not yet fda approved). Like every one else I too would have a second opinion. Whatever you need to keep going.
I'm very sorry to hear what is happening to your health. Keep up the good attitude as much as possible. There is hope out there. A transplant can save your life. I'm glad you have a good doctor. But from my experience as a outpatient at a liver client you should get to know them and they should get to know you as soon as possible.
Do you have a MELD score as of yet? Is that why your doc is waiting? For you to reach a certain level on the MELD score. Do you know your latest blood test results? INR, Bilirubin, Creatine?
To learn more about transplants go to www.unos.org.
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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.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.
The four MELD levels are:
greater than or equal to 25
24-19
18-11
less than or equal to 10
When should laboratory tests be done?
The frequency of laboratory tests, for those patients not in the hospital, will be determined by the patient’s medical condition, ongoing treatments, and MELD score. Your physician may recommend that labs be done more frequently than the MELD score recommendation. The score only indicates how often labs need to be input into the UNOS database. Discuss with your physician and/or transplant coordinator how often lab tests need to be done. If you have a high MELD score and labs are not done at the frequency recommended, your MELD score will automatically be downgraded by UNOS to 6, until new lab results are received and entered into the UNOS database.
Lab Test Frequency
MELD score greater than or equal to 25; Labs needed every 7 days
MELD score 24-19; Labs needed every 30 days
MELD score 18-11; Labs needed every 90 days
MELD score less than or equal to 10; Labs needed every year
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You should get seen by someone at a liver transplant clinic as soon as possible just so they know who you are and that you may be in need of their services in the future. You want them to know you as a person. So they will help you when you need it. There has to be a transplant hospital somewhere in your area.
You are having other symtoms of decompensated cirrhosis also? Varices, stomach bloating, etc.? Do your doctor say how ill you must become before he thinks you need to contact a transplant facility?
Hang in there. A transplant can give you a whole new lease on life.
Hector
Do you have a MELD score as of yet? Is that why your doc is waiting? For you to reach a certain level on the MELD score. Do you know your latest blood test results? INR, Bilirubin, Creatine?
To learn more about transplants go to www.unos.org.
----------------------------------------------------------------------------------------------------
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.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.
The four MELD levels are:
greater than or equal to 25
24-19
18-11
less than or equal to 10
When should laboratory tests be done?
The frequency of laboratory tests, for those patients not in the hospital, will be determined by the patient’s medical condition, ongoing treatments, and MELD score. Your physician may recommend that labs be done more frequently than the MELD score recommendation. The score only indicates how often labs need to be input into the UNOS database. Discuss with your physician and/or transplant coordinator how often lab tests need to be done. If you have a high MELD score and labs are not done at the frequency recommended, your MELD score will automatically be downgraded by UNOS to 6, until new lab results are received and entered into the UNOS database.
Lab Test Frequency
MELD score greater than or equal to 25; Labs needed every 7 days
MELD score 24-19; Labs needed every 30 days
MELD score 18-11; Labs needed every 90 days
MELD score less than or equal to 10; Labs needed every year
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You should get seen by someone at a liver transplant clinic as soon as possible just so they know who you are and that you may be in need of their services in the future. You want them to know you as a person. So they will help you when you need it. There has to be a transplant hospital somewhere in your area.
You are having other symtoms of decompensated cirrhosis also? Varices, stomach bloating, etc.? Do your doctor say how ill you must become before he thinks you need to contact a transplant facility?
Hang in there. A transplant can give you a whole new lease on life.
Hector
Thank you for your reply, I do live near Major Hospitals and L.S.U. Medical Center in Shreveport Louisiana and I have been told they have an excellent Hep clinic there. Only they do not do transplants there. Maybe I need to go ahead and investigate further. I am just seeing a Gastro Dr.at the present they have been watching my test results, and show genuine care and compassion. That in itself is so important to me. I am afraid that if I change Dr. I will lose that. I do qualify for assistance at the L.S.U. as my wife gets free care there. Thanks again for your reply.
Find out how you go about getting on a transplant list. Maybe you can go to a teaching hospital and get a Liver Dr (hepatoligist) to examine you. It sounds to me like maybe they should be putting you on one already.
Do you live near any major hospitals or teaching hospitals. Inquire there.
Bobby
Do you live near any major hospitals or teaching hospitals. Inquire there.
Bobby
What I have meant to relay was, I was diagnosed with all this about 4 years ago. And that the doctor estimates me having the hep c for about 25 years, after hearing my history of bad habits.
My heart goes out to you. I didn't know they had a diagnosis for HVC 25 years ago.
WOW! What a very thought out letter to the forum...
I agree with Texas - do consider a second or third opinion.
We have several folks who have been through transplants - so consider asking them some questions.
Much luck to you!
Meki
I agree with Texas - do consider a second or third opinion.
We have several folks who have been through transplants - so consider asking them some questions.
Much luck to you!
Meki
I am right there with you, brother - it's so hard to guess because the liver enzymes are not always indicators of either how far the disease progressed or how much liver damage has been done......and fibrosis is not a linear progression. Those variables make it impossible to sday that patient y has x amount of time to live.
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