I talked to a hepatologist that works for my doc. She said something about me being too ill for the clinical trial because of my encephalopathy and bilirubin level. I shook my head and said NO WAY!!! I am not quitting at this point now that it is working. She stepped out of the room and call my hepatologist. I think my doc told her don't worry about it she will take care of it. Meaning Chill, woman.
She doesn't know me like Dr. Terrault does after 5 years of working together. Neither of us quit when the going gets rough. Never.
But I need to improve my blood levels soon. Not that I have any control over them. They tend to go up and down periodically over time so hopefully this is a temporary glitch. My eyes are turning yellow from jaundice. Not a good sign when you have liver disease.
Worse case I will plead to my hepatologist and if there is anyway she can keep me in the trial, I know she will. I don't care how ill I feel, I am not a quitter. Bring it on pain. So be it. I do not want to ever have a HCV viral load ever again. If I have to lay in bed for months... so be it. Of course if my liver starts to fail that is another story as that is really not a choice...
The other thing I heard was that one of our group is getting a transplant tonight. So we will see soon whether they have recurrence of hep C after transplant. That will be very important information for the rest of us cirrhotics with HCC in this trail. All folks in our study at my transplant center became undetectable by week 4 and there have been no breakthroughs.
Good attitude Hector I hope you can finish out the trial and your blood levels improve. Sorry to hear about the jaundice, is that something that can improve also? hope so..
I know if anybody can hang in there it is you....
I am very sorry to hear about the whole scenario. Since your post I have been reading and reading trying to come up with some ideas that may help and finally it hit me, you are in expert hands with your doctor and all the knowledge you have! I know you know this is the key to survival with this disease. Together you will be an unbeatable team that will figure out the best options for you.
Certainty if you can continue the study drug that would be best but do be cautious with your liver in this delicate condition. Don't miss your chance for transplant if the time comes. Your determination and strength is and inspiration to all of us!
Thank you for keeping us posted, I will be saying a prayer for you tonight and as always hoping the very best for you!
My bilirubin tends to vary usually between 2.0 and 2.9. In June I was 4.0. Go back down baby, so in 4 weeks so this issue won't come up again.
Everyone else at UCSF is doing well except person who had a back issue that he has to be hospitalized for. I don't know if it was related to treatment or not. The others have had short periods of feeling bad but they are feeling fine apparently. Hey, we are all different in how we respond.
I hope I can get a transplant soon so I don't have to worry about this. Got to stay positive and determined to complete this treatment. This is my #1 priority. I only have 16 weeks to go. One day at a time.
Thanks!!! Good vibrations are very much appreciated. Maybe I should put the Beach Boy song on? I am also having a Long Term Disability issues so I am stressed.
May I add that Tylenol is unless. It doesn't even touch the physical pain I am in. I tried it a few times hoping it would help. Nada. Zip. Like a fly on an elephant. ;-)
Randy, you are so right. I have the best of the best. It is just that my doc wasn't in the office today (probably getting ready for the AASLD meeting in Boston) so I got someone else who I have only seen 2x over the years.
I am gonna take the first liver that comes. I have decided that. I used to be more hesitant. No more. They will only offer me a liver that is right for me.
Thank you so much for thinking of me. Your post was very helpful. A good reminder that I have the best care possible. And I can rely on my doctor to do everything she can for me. So I will do my part as a patient to make the best of my situation. Only if it gets to the point of me having to go to the hospital will I think maybe my liver disease has progressed too far.
I am thinking about the one of us 4 who started this trial about 8 weeks ago that is having his transplant right now, tonight. I hope everything goes well for him. I will probably get to meet him next week at our support transplant meeting where we meet patients that are still on the transplant floor post surgery I am sure his loved ones are going through a tough time now. I hope there here good news very soon.
I met a gentleman today who is 17 years post transplant today at our meeting. He looks great. It was inspiring. Then we had two newer patients that are about 3 weeks post transplant. They look better every week I see them. And there was a mother and daughter that went through a living donor liver transplant there. The daughter looked great. She is only 27 years old. She is having some pain issues but nothing serious after giving her mom a part of her liver. Love is a powerful thing. And she in very brave never having had any serious illness in her life and then donating a piece of her liver so her mom can live. WOW. Her mom is like my age 50s-60. She is still using a walker, but 5 days after transplant she is slowly bouncing back. No rush I told her. That it easy. Let others care for you. I love talking to our fellow transplant patients. It is very encouraging to see people come back from the brink of death. It keeps me pushing forward even with all the setbacks.
Thank for your support Randy. It really means a lot to me.
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