Aa
treat or not
Finally, I saw the doctor of my dreams. He's an I.D. doctor but has four decades of experience with almost every infectious disease on the planet. He spent two hours talking to me yesterday. He knows his stuff. I've been to five doctors, so I can tell.
He said I do NOT need to have another biopsy. He could tell from Dr. Gish's pathologists' comments, even though they were working with not enough strands and fragmented tissue, from my labs, and CT scan that I am late Stage 3, maybe early 4, and having another biopsy serves no purpose at this point. It's risky and would mean more passes, more samples and a greater possibility of internal bleeding.
I had blood drawn today for TT (or CC). If I have CC, then I won't hesitate to treat.
He presented a lot of reasons for stepping back and really thinking about doing tx. I am 65. I am not in good shape - mentally or physically. Do I want to give up a year of my life being so sick and maybe not achieving SVR? Do I have strong support system (no, I don't). Do I want to take the chance, albeit rare, that the tx can accelerate the damage. Or do I want to take care of myself better and hope this thing isn't moving too fast. He told me to think about it - for at least three months.
He said if I treat he had to monitor me every two weeks - as in, face to face. He's 70 miles away, but that's not an issue, not when it comes to my life. He is just one of those doctors who is very hands on with his patients (he's a D.O. and a PhD). He handles every aspect of tx - labs, rescue drugs, gastro issues, the whole thing. Of course it's a crap shoot as to whether the virus is going to accelerate rapidly or not. We never know.
He told me to see a psychiatrist, that a PA (who I have been seeing for three years and who decided I was BP II, but I am fairly sure I'm not) was "useless" for someone like me - I am depressed and surely on the wrong meds because until I started them I never had clinical depression. I am a very "sensitive" person, what used to be called "high strung", and from what I have read, we don't tend to do so well with interferon ~ even with the right head meds.
My viral load doubled from the test in May to the test on August 31. Dr. said that is stress, a compromised immune system. Stress and deep grief. I lost my best friend, my Pepper dog, on August 6.
What suggestions do you have? Is Incivek the better of the protease inhibitors if one is early cirrhotic since there's no lead in, and at 12 weeks it will be obvious if you are doing well? Would failing tx make me more resistant to the new drug - the wonder drug. He did say not to count on 2014. Those in the field expected the protease inhibitors to come out long before they actually were approved by the FDA. So it could be more like 2015 or 2016 with so many hoops to have to jump through.
Thanks so much. I value you input - always have.
I hope I have not been confusing. I am sure I have asked too many questions. Sorry.
He said I do NOT need to have another biopsy. He could tell from Dr. Gish's pathologists' comments, even though they were working with not enough strands and fragmented tissue, from my labs, and CT scan that I am late Stage 3, maybe early 4, and having another biopsy serves no purpose at this point. It's risky and would mean more passes, more samples and a greater possibility of internal bleeding.
I had blood drawn today for TT (or CC). If I have CC, then I won't hesitate to treat.
He presented a lot of reasons for stepping back and really thinking about doing tx. I am 65. I am not in good shape - mentally or physically. Do I want to give up a year of my life being so sick and maybe not achieving SVR? Do I have strong support system (no, I don't). Do I want to take the chance, albeit rare, that the tx can accelerate the damage. Or do I want to take care of myself better and hope this thing isn't moving too fast. He told me to think about it - for at least three months.
He said if I treat he had to monitor me every two weeks - as in, face to face. He's 70 miles away, but that's not an issue, not when it comes to my life. He is just one of those doctors who is very hands on with his patients (he's a D.O. and a PhD). He handles every aspect of tx - labs, rescue drugs, gastro issues, the whole thing. Of course it's a crap shoot as to whether the virus is going to accelerate rapidly or not. We never know.
He told me to see a psychiatrist, that a PA (who I have been seeing for three years and who decided I was BP II, but I am fairly sure I'm not) was "useless" for someone like me - I am depressed and surely on the wrong meds because until I started them I never had clinical depression. I am a very "sensitive" person, what used to be called "high strung", and from what I have read, we don't tend to do so well with interferon ~ even with the right head meds.
My viral load doubled from the test in May to the test on August 31. Dr. said that is stress, a compromised immune system. Stress and deep grief. I lost my best friend, my Pepper dog, on August 6.
What suggestions do you have? Is Incivek the better of the protease inhibitors if one is early cirrhotic since there's no lead in, and at 12 weeks it will be obvious if you are doing well? Would failing tx make me more resistant to the new drug - the wonder drug. He did say not to count on 2014. Those in the field expected the protease inhibitors to come out long before they actually were approved by the FDA. So it could be more like 2015 or 2016 with so many hoops to have to jump through.
Thanks so much. I value you input - always have.
I hope I have not been confusing. I am sure I have asked too many questions. Sorry.
The fact that Jungleheart is taking into consideration her age, health staus, and getting 3 different Doctors' opinions, is definitely impressive.
I have read of many health problems on here occuring, during a persons Tx, and have also noted the very serious health problems the people in my IRL Support Group have had, especially when they have other co-existing health problems going, simultaneously. Anemia, Sepsis, and all kinds of different bacterial and fungal infections, rashes over 98% of their body, lung problems, varices that needed banding, and the list could go on~
My Doctor doesn't Treat people, when they are feeling emotionally
unstable (as JH has often stated she feels)
I dont think Can-Do was trying to be snappy, but his honesty may have been taken as blunt. When discussing our mental health, it is easy for feelings to be sensitive.
I have read of many health problems on here occuring, during a persons Tx, and have also noted the very serious health problems the people in my IRL Support Group have had, especially when they have other co-existing health problems going, simultaneously. Anemia, Sepsis, and all kinds of different bacterial and fungal infections, rashes over 98% of their body, lung problems, varices that needed banding, and the list could go on~
My Doctor doesn't Treat people, when they are feeling emotionally
unstable (as JH has often stated she feels)
I dont think Can-Do was trying to be snappy, but his honesty may have been taken as blunt. When discussing our mental health, it is easy for feelings to be sensitive.
I don't want you to go away. You are highly sensitive and highly intelligent and have so much to offer. I don't want you to stop posting. I just want you to make a choice to take what is useful in what others say and leave the rest without all the emotional stuff because it will be a hindrance in this setting.
Peace to you, Jungle.
Peace to you, Jungle.
Can-do, my last bx was in May 2012, first one in 2002. The first one was easy; the one in May was pure horrific. The last thing I am going to do is read those links. You have proven by your words that I have confused everyone. I believe it. Can I discuss this like an adult someone asked - guess not. I've made a fine mess of this.
I'm going to try to get through this jungle and stop confusing people. I have been told more than once that I do that. I take my leave as far as posting and will just read. Thanks again to all of. Please drop this. Please.
I'm going to try to get through this jungle and stop confusing people. I have been told more than once that I do that. I take my leave as far as posting and will just read. Thanks again to all of. Please drop this. Please.
Hi,
Idyllic has just presented this situation so beautifully.
I just didn't know how to respond to the issues you face but I have felt supportive of you, just didn't know how to express it.
Once again, our Idyllic has been a gem of clarity.
I agree that you shouldn't regret sharing. We all learn from each other and our stories. I have learned much from you and the posters who have advised you.
No regrets, move forward. :-)
Idyllic has just presented this situation so beautifully.
I just didn't know how to respond to the issues you face but I have felt supportive of you, just didn't know how to express it.
Once again, our Idyllic has been a gem of clarity.
I agree that you shouldn't regret sharing. We all learn from each other and our stories. I have learned much from you and the posters who have advised you.
No regrets, move forward. :-)
Hey you have shared lots of info with us as well as various aspects of your life. I would hate for you to regret that or feel like your words are being thrown in your face. I am honestly not seeing that here. I am seeing that many of us retain salient info from your other posts as things other doctors have said to you and like anything in life we develop a perspective a we go along.
____________
One thing this doctor said is consistent with your instincts related to your BP diagnosis:
★*¨*•*♦¸.•*´✡ He told me to see a psychiatrist, that a PA was "useless" for someone like me - I am depressed and surely on the wrong meds because until I started them I never had clinical depression★ *¨*•*♦¸.•*´✡
☞ I would start here. You have three months to decide and in the meantime you can see someone who might diagnose you differently. I would ask the doctor you saw today for a referral. It takes a giant weight off your shoulders when the treating psychiatrist and treating physician collaborate with one another.
✏ This is the start of developing your own "treatment team" based on you medical condition. In my case I have my GI, a Dermatologist, the psychiatrist who prescribed my AD, my PCP who monitors my kidney issues and well,... I guess I added an Endo to the lot since I really did not want my GI doing the follow-up on the hypothyroidism I developed in week 13.
☆ I know it sounds overwhelming at first but now that I am week 36 and I am regulated on my meds I average one or two doctor appointments a month (with weekly labs though).
Your treatment team will be different but I hope you get the idea.
_________________
Three months is enough time to have a new Psych Eval and start a new med if necessary. That way you will be regulated on whatever medication you take well before starting treatment.
This might be something you would like to pursue no matter when you start treatment - if at all.
___________
I know it doesn't feel like it right now but things are falling into place. :)
____________
One thing this doctor said is consistent with your instincts related to your BP diagnosis:
★*¨*•*♦¸.•*´✡ He told me to see a psychiatrist, that a PA was "useless" for someone like me - I am depressed and surely on the wrong meds because until I started them I never had clinical depression★ *¨*•*♦¸.•*´✡
☞ I would start here. You have three months to decide and in the meantime you can see someone who might diagnose you differently. I would ask the doctor you saw today for a referral. It takes a giant weight off your shoulders when the treating psychiatrist and treating physician collaborate with one another.
✏ This is the start of developing your own "treatment team" based on you medical condition. In my case I have my GI, a Dermatologist, the psychiatrist who prescribed my AD, my PCP who monitors my kidney issues and well,... I guess I added an Endo to the lot since I really did not want my GI doing the follow-up on the hypothyroidism I developed in week 13.
☆ I know it sounds overwhelming at first but now that I am week 36 and I am regulated on my meds I average one or two doctor appointments a month (with weekly labs though).
Your treatment team will be different but I hope you get the idea.
_________________
Three months is enough time to have a new Psych Eval and start a new med if necessary. That way you will be regulated on whatever medication you take well before starting treatment.
This might be something you would like to pursue no matter when you start treatment - if at all.
___________
I know it doesn't feel like it right now but things are falling into place. :)
Am I missing something? What just happened? What did you get pissed off at Jungleheart? I have a few suggestions but you have to be able to discuss things and accept feedback like an adult. Can you?
Sorry you feel that way, but sense you bring this up there seems to be a lot of confusion in what your telling us here. Just a couple of examples, you just said this...."How about another biopsy only 5 months after the last one? Isn't that a tad bit risky? This next one will be more invasive. Unlike the last one, I WILL have something going thru that IV line - sedation and pain meds. The last one was a nightmare. And that "gun" was so frightening since I was lying there with no sedative at all. To me, that is just abominable to do to someone. No more "guns" for sure. Or should I just hit the tx and not even do another bx? I mean, obviously I'm there - Stage 4."
http://www.medhelp.org/posts/Hepatitis-C/Bx-Concerns/show/1806186#post_8321254
But when you were posting under catmagic0406 you were saying your last biopsy was 10 years ago and that you just had a ct scan when asked when was your last biopsy...."I did have a liver biopsy 10 years ago - I was Stage 1, Grade 0. So with that, I thought this would not progress to this point 10 years later. Up until the last blood draw in November, my numbers weren't that bad. THEN, in that November draw my AFP was 20.9 - up from 13 a year before. So it was obvious that things were changing... and not for the better."
http://www.medhelp.org/posts/Hepatitis-C/Steatosis-G1-PIs/show/1725098#post_7903701
Plus in that thread you talk about how it was a walk in the park, no pain because you was so thin... So now if i have missed something I am really sorry but before you go on the attack of me for just giving my opinion on what seems like confusion on your part maybe you ought to read back the things you have been telling us.
"That was a bit of a slap in the face, can-do,".
Myself I don't think so and it would look like your new doctor feels the same way, please if I have missed something just point it out. I really do wish you the best.
I won't be asking anymore I can assure you of that. I was afraid that would happen (your reply) so I apologized ahead of time. No more questions. No more issues.
That was a bit of a slap in the face, can-do, but it is what it is. So ....... I'm gone (again).
Thank you everyone. I wish everyone the very best.
That was a bit of a slap in the face, can-do, but it is what it is. So ....... I'm gone (again).
Thank you everyone. I wish everyone the very best.
Congrats on finding a good doctor who you can trust. This is a very good thing.
It sounds like he has given you excellent advice.
Only you can truly answer this question of whether to wait or not. By now you are well informed and have had good advice from many different sources.
Tx is hard emotionally and psychologically on the most solid clear minded people with good support systems in place. This is no small consideration.
You do need to think long and hard on what would be best for you.
Use your mind and your heart, your intuition, to help you chose.
Then go forward without regrets.
Best of luck,
OH
It sounds like he has given you excellent advice.
Only you can truly answer this question of whether to wait or not. By now you are well informed and have had good advice from many different sources.
Tx is hard emotionally and psychologically on the most solid clear minded people with good support systems in place. This is no small consideration.
You do need to think long and hard on what would be best for you.
Use your mind and your heart, your intuition, to help you chose.
Then go forward without regrets.
Best of luck,
OH
The I.D. really does sound good, Jungle.
I am the last person to seriously advise you to treat or wait. I just don't know enough, I think Pooh and Hector have spent a lot of good effort working this through with you and it has been an education for me. I wouldn't presume to try to say different.
However, it is your choice and I think Can-do and your I.D. are probably right that this may not be the best time to put yourself through treatment.
Good luck to you and all the best
I am the last person to seriously advise you to treat or wait. I just don't know enough, I think Pooh and Hector have spent a lot of good effort working this through with you and it has been an education for me. I wouldn't presume to try to say different.
However, it is your choice and I think Can-do and your I.D. are probably right that this may not be the best time to put yourself through treatment.
Good luck to you and all the best
"What suggestions do you have?'
You seem to keep asking us that but then find any reason to disagree with the answers. Though I do agree with this doctor suggestions on seeing a psychiatrist and trying to get your emotions under control before ever thinking about treating as one needs to be fully committed to doing this, its not something one can start and stop, or hit and miss. I would be surprised if any doctor would start you at this time on treatment, I don't mean this in a bad way its just with these current PI's its really a one shot deal, just my opinion, good luck.
You seem to keep asking us that but then find any reason to disagree with the answers. Though I do agree with this doctor suggestions on seeing a psychiatrist and trying to get your emotions under control before ever thinking about treating as one needs to be fully committed to doing this, its not something one can start and stop, or hit and miss. I would be surprised if any doctor would start you at this time on treatment, I don't mean this in a bad way its just with these current PI's its really a one shot deal, just my opinion, good luck.
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