Billy,
I'm not informed enough about post transplant patients to offer an opinion on the fluid part, but I wish you only the best.

What does your doctors say? I wouldn't trust something this important to a nurse.

Bob

Billy ure between a rocj and a hard place...yea tx is brutle or can be.....they can lower the doses...now if u become undie say 4 wks....then the virus is pretty much gone.....should help ure liver alot..no more attacks by the virus.....if u get sick u can stop the meds...tale 1 day at a time......god bless

Billy, Billy, Billy!!!

What am I gonna do with you??? ;>) ;>) ;>)

Seriously, the first thing you must do ASAP is to insist on speaking to your transplant team because of your justifiable concerns...

There is a program called compassionate use from the FDA that will give certain patients some of these newer all oral DAA's (Direct Acting Antivirals) and this is something you must also bring up with your Doctor because he/she has to request the use of these drugs by verifying that if you do not get treated with the newer drugs, you will not survive for more than I believe, 12 months or so...

If they will not do this for you, then find someone that will!!!

Now, let's review what I'm suggesting to you...
You need to find out exactly, precisely what you condition is and what is the status of your liver, your blood work, etc....

And please don't tell me that no one will give you any information because that only tells me that you're not being as much as a pain in the ass to them that you should be in order for you to get the information you need in order to get the proper advice and suggestions so that you can make an educated and informed decision as to whether or not you should treat with triple therapy because you're running out of time or, you can wait a while longer for the newer DAA's that will be approved in a very short period of time.

you need to be more assertive towards these doctors because it is after all, your life - not theirs!!!! Remember this is a war you're in and you need to treat it as such or else they will walk all over you to your peril if you don't stand up for yourself!!

Also, like Bob already mentioned in his post, you should not rely on only a nurse to give you what you need to know when the doctors is the primary health care provider responsible for your well being...

If you only have your transplant, and hepatology doctors to rely on then you're letting your "six" to be very, very vulnerable! You need to find a primary care physician for you beside the doctors you already have Billy.

Also, get a few bucks together and go to the record department and request copies of your medical records including your last work up during the most recent visit to the hospital so you can #1, learn to understand what's in there (We can all help you with that if you want) because if you know what's going on , nobody can tell you BS and if they're ignoring all of your options for treatment, then the only way you can know for sure is by knowing your condition and doing your own research or with some of our help, in order for you to find out all of your available options instead of feeling like you do currently...

Finally, if they - meaning the doctors currently treating you cannot give you the answers you seek, then FIRE THE BUMS!!! PERIOD!

And get yourself some doctors who will explore all of your available options so that you can get the knowledge and understanding the kind of care you deserve.

So if you get anymore information on you current condition liver wise and what your blood numbers look like, then we can hopefully steer you in the right direction Billy... But without more specific data, we are then forced to assumptions and you know what happens when that happens right Billy???

Oh yeah- I almost forgot, DON'T FORGET TO BREATHE!!!

Respectfully,
Henry

Billy, what you and I both can do is make appointments to talk with Dr. Galati about the program called 'compassionate use' that Henry mentioned above. I don't, however, feel that I have no more than a year to live as Henry said, and I'm more advanced than you are, since I'm phase 2-3 fibrosis in my second liver, and have a partial stenosis in the portal vein. The last time I asked about putting in a stent, I was told that Dr. Ghobriel feels that since blood flow is still patent, he doesn't want to do that. I would probably go for the newer all orals through compassionate use if I qualified, but I won't take the triple.
About getting copies of all reports: Each time I get labs done or have anything done in or out of the hospital, I get copies of those reports. Rekesiah sends me lab report copies promptly, but I have to ask each time. I'll message her email address to you.
I have a primary care physician, as Henry mentioned, and I take copies of my labs to his office, but if I needed anything done relating to my liver, he would just tell me to go to Houston, of course.

Great advice Q! ;>)

Billy, I forgot to add that you're a stage 2 fibrosis with your transplanted liver correct??? If that is what you described then you really are in a very good position history wise to be in because of the close proximity to the newer drugs being close to approval...

So you need to hang on to that positive factor... And since you're only stage 2, you don't need to worry about trying to get your doctors to put you in compassionate use status because you will not meet the criteria anyway... So you got time before things get critical with your liver Billy

With respect to the triple therapy, the really dangerous part of it and yet not so much if you're on Cyclosporine nonetheless still potentially harmful are the 1st generation DAA's known as Telaprevir (Incevik) & Boceprevir (Victrelis) which will lower the effectiveness of the Cyclosporine you take as an anti-rejection drug (It's even worse for me since I take Prograf/Tacrolimus) and the fact that the SVR rates for post transplanted patients isn't as good as what was first thought inititially...

However, I was on interferon for many years and many times and yes it was difficult @ times to tolerate but, for the most part managed to complete most of the courses they put me on with the exception of a few that I had to prematurely end before the recommended end point was reached due to anemia and other unrelated complications...

I guess what I'm getting @ is this... If your doctors can wait until the Sofosbuvir get's approved, you may be better off even though you will still have to be on both Interferon and Riba...

But, but, the best part of the option is the fact that you will not need to be on such a long treatment course mostly because of the Sofosbuvir interacting with the rest of this newer type of "triple therapy" for Genotype 1's and that is sooo much better than being on the treatment for 48 weeks to achieve SVR!!

You'll probably become SVR much sooner because of the Sofosbuvir and not be required to go through the tortuous length that current triple therapy patients suffer through... And you'll probably experience less AR's & SE's (Adverse Reactions &Side Effects)...

If you need to treat ASAP. then consider to treat with the Sofosbuvir instead of the current DAA's being used in triple therapy today...

Finally, If they cannot justify to put you on Sofosbuvir in combination with Interferon/Riba instead, then you need to fire them and get someone that will provide you with what you need that will probably work better for you Billy. ;>) nand if you're not willing to change your current doctors then be really stubborn and insist on waiting for the approval of the Sofosbuvir which is only a month or so from now...

It will be approved for use on patients with Genotype 1a or 1b but only with the use of both Interferon and/or Riba in combination and will also be left to the doctors discretion as to whether or not to use it with either the Interferon or just the Riba alone, or the combination of all three...

So, don't let your current situation get you down Billy because help is on the way brother!!! ;>) And again, Don't forget to BREATHE!!! God bless ya!

Respectfully,
Henry

Thanks Henry I just hate going to get my stomach fluid pumped out. very painful thing to do all the time. I hope That was just a one time deal, But not sure just yet. I will speak to my doctor in 2 weeks that's my appointment date and see if he will pt me on the newer drugs. I know I have to do something. I have heard of people that just took the Sofosbuvir and were geno type 1a and got rid of the virus without any other combination on the trials they did. I can't understand why we have to take the Interferon and the other if they have already proven it works without the interferon and the Riba. Sounds like money to me for these big companies and the doctors.

I didn't read anything but the thread title. My STRONG advice is don't do it.

Oh sh!t. Transplant? I hadn't seen that. Talk to Respectful Henry and the Lovely Marilyn. They will steer you right.

The Sofosbuvir does work very well for folks that have never treated before but, for post transplanted patients, it will not work that well on it's own which is why if you're a geno 1a you'll need to also take either the Ifn, or the Riba in order to hopefully get you to SVR in a short period of time...

Now, I don't know if you heard about that patient in Michigan that went on an all oral combination of Sofosbuvir and Daclatsvir and the combo got him to SVR in about 4 weeks and has been SVR since 2012!!!

The only problem with that combo is the fact that at one time both companies that developed the drugs are no longer collaborating with each other because of their mutual greed!!!

The other important factor is that you need to be in such critical condition that your doctor has to verify by proof that you have less than 12 or 18 months (I don't remember exactly which time it is) to live and there's nothing else that will work in order to apply for compassionate use of the 2 drugs via the FDA.

Here's the link:

http://hepc-cured.com/doctor-granted-fda-emergency-approval-to-use-sofosbuvirdaclatasvir-for-hepatitis-c-transplant-patient/

I personally lost track of how many times my doctors drained fluid from my abdomen so I know how frustrated you are but, this too shall pass Billy...
@ stage 1-2 of fibrosis currently gives you plenty of time for the newer Ifn free drugs that will be approved very shortly.....

Hold on brother!!! Just a little more patience Billy! The cure is just around the corner for all of us real soon!!! ;>) ;>) ;>)
P.S. Are they giving you pain meds when they drain you? Ask for it!

Respectfully,
Henry