Aa
And now, we wait
I had a much anticipated consult with my Doc yesterday about what is next for me with Hep C and cirrhosis. A "little" Ascites 3 months ago (though you probably wouldn't notice and not enough to warrant Paracentesis) and Edema that has gone away entirely. 2 months of detox diet, more exercise, no alcohol or Advil. (Most) Blood tests are all close to normal and continue to improve steadily and MELD dropped from 12 to 10. So, the problem is, what to do next? I geared myself up for a Hep C regimen that would include Interferon - hopefully for 12, not 48 weeks but now there are the new drugs that will be out in 9 months or so and new, less intense treatments just on the horizon. My doc says we should wait a few months and do blood work again. Meantime, I am plagued by constant fatigue. Am I just being impatient to have a more concrete plan and timeline? Because of the cirrhosis, I could go from not so sick to Very sick if something were to go wrong at any turn. I know there are people out there who are much sicker than me. I have a consult with another hepatologist next week but no one seems to want to give me what I really want : A LIST - here are 5 courses of action we could take and here are the pros and cons of each one
Hey girlfriend!
Don't do it! Don't give up and def don't take Ibuprofen! Advil had been my lifelong friend but I find that a little Tylenol and meditation is helping control my pain. And, this seems counter intuitive when one is so tired, but a long walk helps both pain and fatigue for me. If you want to talk offline, PM me and I will call you. I sometimes feel like I am dying too but then I remember that everyone dies and so I try to make each day one that opens my eyes to new things or makes me appreciative of my friends and family. Music too. Music is good for the soul. Hang in there!
Don't do it! Don't give up and def don't take Ibuprofen! Advil had been my lifelong friend but I find that a little Tylenol and meditation is helping control my pain. And, this seems counter intuitive when one is so tired, but a long walk helps both pain and fatigue for me. If you want to talk offline, PM me and I will call you. I sometimes feel like I am dying too but then I remember that everyone dies and so I try to make each day one that opens my eyes to new things or makes me appreciative of my friends and family. Music too. Music is good for the soul. Hang in there!
I am not doing very well, due to my recent trauma. I cancelled my jan 3rd appointment with transplant center and proceeded to eat everything in sight (mostley goodies). I am getting fatter and more tired as days go by. I have also developed Charlie horses in my legs a lot and then constantly hurt. I also have a lot of headaches, which is unusual for me. I am taking painkiller every day,which is also unusual for me. (ibruprofen) 800mgs. I am having an mri and bloodwork and kidney testing before my other appjointment on jan 22. so that way I have all the results already for them. I am so scared that I am going to die It's just too much for me. I feel like giving up and I know that is not an option, because my family needs me right now. thanks guys I pray that the new year will be good to all of you great people. So Blue
"And, is it true that I need liver transplant as a backup to undergo treatment for Hep C? Is this because of my cirrhosis?"
I'll answer your question with my husband's experience. My husband had advanced cirrhosis when he attempted triple treatment with Incivik. It took a huge toll on him and he became much sicker to the point where he developed end stage liver disease (including hepatic encephalopathy, varices in the esophagus and stomach, serious edema,
ascites, and portal hypertension). All of these are life threatening. That is why he needed to be on a liver transplant list before treatment was started.
Hope his experience gives you some better understanding of your own situation.
I'll answer your question with my husband's experience. My husband had advanced cirrhosis when he attempted triple treatment with Incivik. It took a huge toll on him and he became much sicker to the point where he developed end stage liver disease (including hepatic encephalopathy, varices in the esophagus and stomach, serious edema,
ascites, and portal hypertension). All of these are life threatening. That is why he needed to be on a liver transplant list before treatment was started.
Hope his experience gives you some better understanding of your own situation.
Thanks everyone for your comments. I guess the real problem is that I am not pleased with my doctor and I am really trying to get into UCSF. I tried to reach the clinic today and left them a message but was never called back so perhaps I will just walk up there tomorrow to see if I can make an appointment. Even if I have to pay out of pocket for a consult.
But my doctor feels that he is having these discussions with "the team". Why am I not at the table? This is my life after all, not a broken carburetor.
Here is the last message that my doctor sent to me:
"I am sorry if things were not clear. We have been working together the last two months on the large number of pre-liver transplant evaluation tests. No problems were identified that would prevent you from having a further transplant evaluation, though your liver is stable to improved at this time. We discuss the options available extensively and regularly for our patients within our GI team at KP San Francisco, with the KP Liver Transplant Team and with the UCSF Tranplant team. Thus, we have had the discussions you mention below regarding your care. I had been in contact with the UCSF service regarding trials available - those were the ones we talked about - see also below.
The plan we discussed is:
1. The currently available medication treatment regimens for your virus type require interferon. I would not recommend you receive this until you have liver transplant as a backup, particularly since your labs have been stable to improved over the last couple months. The liver transplant board stated you can be evaluated for liver transplant once you are off all alcohol and other drugs such as marijuana for six months. (Note that I have not had a drink nor smoked medicinal cannabis since my diagnosis on October 5th)
2. The only current alternative to interferon-based treatments for your type of hepatitis C at this time is an experimental trial. When we first met two months ago and met again last month, we talked about the possibility of experimental non-interferon trials. On those occasions you stated you were not interested in experimental trials, (I don't recall ever saying this) though on our visit this week my understanding is that you are potentially interested. The trials open at UCSF when I recently checked for your situation are for patients who are pre-liver transplant/on the transplant list. Thus, you would need to be on the transplant list for these (this relates to #1 above, that there will be some months for this).
3.Unfortunately, the presence of cirrhosis can still cause fatigue and some of the the other symptoms you are experiencing. There is no easy fix for this - it is part of having cirrhosis. I wish we had better treatments.
5. For your foot pain, would avoid NSAIDS and narcotic pain medications. You can seen Dr. Herman to determine if other treatments are available. You can take up to 1000 mg of tylenol per day.
I understand it is frustrating that there is not an easy and immediate fix for your cirrhosis, and that the existing treatments may not be desirable. Happy to continue to work with you on what is available.
************
I just don't feel like my doctor is being an advocate for me and when I say things like, I really believe I should see a hepatologist as part of our team or someone in my support group said...., he seems to get mildly defensive. So, as far as I understand, I have to be on the transplant list before treatment will be considered. And, I guess I need to wait at least 3 more months for a drug test or something that will prove that I have not had any alcohol or cannabis? And, is it true that I need liver transplant as a backup to undergo treatment for Hep C? Is this because of my cirrhosis?
Thank you for all your support and good advice. I want Hector's doctor!
But my doctor feels that he is having these discussions with "the team". Why am I not at the table? This is my life after all, not a broken carburetor.
Here is the last message that my doctor sent to me:
"I am sorry if things were not clear. We have been working together the last two months on the large number of pre-liver transplant evaluation tests. No problems were identified that would prevent you from having a further transplant evaluation, though your liver is stable to improved at this time. We discuss the options available extensively and regularly for our patients within our GI team at KP San Francisco, with the KP Liver Transplant Team and with the UCSF Tranplant team. Thus, we have had the discussions you mention below regarding your care. I had been in contact with the UCSF service regarding trials available - those were the ones we talked about - see also below.
The plan we discussed is:
1. The currently available medication treatment regimens for your virus type require interferon. I would not recommend you receive this until you have liver transplant as a backup, particularly since your labs have been stable to improved over the last couple months. The liver transplant board stated you can be evaluated for liver transplant once you are off all alcohol and other drugs such as marijuana for six months. (Note that I have not had a drink nor smoked medicinal cannabis since my diagnosis on October 5th)
2. The only current alternative to interferon-based treatments for your type of hepatitis C at this time is an experimental trial. When we first met two months ago and met again last month, we talked about the possibility of experimental non-interferon trials. On those occasions you stated you were not interested in experimental trials, (I don't recall ever saying this) though on our visit this week my understanding is that you are potentially interested. The trials open at UCSF when I recently checked for your situation are for patients who are pre-liver transplant/on the transplant list. Thus, you would need to be on the transplant list for these (this relates to #1 above, that there will be some months for this).
3.Unfortunately, the presence of cirrhosis can still cause fatigue and some of the the other symptoms you are experiencing. There is no easy fix for this - it is part of having cirrhosis. I wish we had better treatments.
5. For your foot pain, would avoid NSAIDS and narcotic pain medications. You can seen Dr. Herman to determine if other treatments are available. You can take up to 1000 mg of tylenol per day.
I understand it is frustrating that there is not an easy and immediate fix for your cirrhosis, and that the existing treatments may not be desirable. Happy to continue to work with you on what is available.
************
I just don't feel like my doctor is being an advocate for me and when I say things like, I really believe I should see a hepatologist as part of our team or someone in my support group said...., he seems to get mildly defensive. So, as far as I understand, I have to be on the transplant list before treatment will be considered. And, I guess I need to wait at least 3 more months for a drug test or something that will prove that I have not had any alcohol or cannabis? And, is it true that I need liver transplant as a backup to undergo treatment for Hep C? Is this because of my cirrhosis?
Thank you for all your support and good advice. I want Hector's doctor!
I agree with Hector and Advocate. The sooner you treat the better.
My husband has recurrent Hep C after liver transplant and now has cirrhosis in the new liver despite his AST and ALT being pretty close to normal range. He will be starting Sovaldi and Ribavirin for 24 weeks (no interferon) as he is not eligible for the interferon. We are aware and his doctor confirmed that he has about a 70 % chance for a cure. At least it will give his liver a break from the Hep C and bring us closer to the other new treatment which has a higher cure rate.
Might this not be an option for you if you are not able to take the interferon?
My husband had a very hard go of it with the triple treatment with Incivik. He had
My husband has recurrent Hep C after liver transplant and now has cirrhosis in the new liver despite his AST and ALT being pretty close to normal range. He will be starting Sovaldi and Ribavirin for 24 weeks (no interferon) as he is not eligible for the interferon. We are aware and his doctor confirmed that he has about a 70 % chance for a cure. At least it will give his liver a break from the Hep C and bring us closer to the other new treatment which has a higher cure rate.
Might this not be an option for you if you are not able to take the interferon?
My husband had a very hard go of it with the triple treatment with Incivik. He had
A MELD score of 10 is not too bad, but as Hector mentioned, that could change at any time. An increase in portal hypertension could cause more severe ascites, more severe edema, bleeding varices, etc. A build up of toxins could cause hepatic encephalopathy, any of which would make you much more ill and cause an increase in your MELD score, which of course you do not want.
If you are not already being seen at UCSF, that is where you need to be, given that you have Cirrhosis that is on the border of decompensating. Make sure you have an excellent hepatologist familiar with Cirrhosis and Hep C. You should be followed at least every 3-6 months to screen for liver cancer and to watch for further signs of decompensation.
Not sure I can put together a list of options and pros and cons. I don't know if you've previously treated or not. 1) If you haven't previously treated, treat now with sofosbuvir, ribavirin, and interferon, and do it as soon as possible; 2) if you have previously treated and failed, ask your hepatologist if he/she is able to treat you off label with interferon free drugs; 3) look for an appropriate clinical trial; and 4) wait a year for all oral meds, but run the risk of decompensating and getting very ill.
Good luck and keep us posted.
Advocate1955
If you are not already being seen at UCSF, that is where you need to be, given that you have Cirrhosis that is on the border of decompensating. Make sure you have an excellent hepatologist familiar with Cirrhosis and Hep C. You should be followed at least every 3-6 months to screen for liver cancer and to watch for further signs of decompensation.
Not sure I can put together a list of options and pros and cons. I don't know if you've previously treated or not. 1) If you haven't previously treated, treat now with sofosbuvir, ribavirin, and interferon, and do it as soon as possible; 2) if you have previously treated and failed, ask your hepatologist if he/she is able to treat you off label with interferon free drugs; 3) look for an appropriate clinical trial; and 4) wait a year for all oral meds, but run the risk of decompensating and getting very ill.
Good luck and keep us posted.
Advocate1955
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