Hi Ya and Hubby

[Guest guest]

Honey I understand cause I have been there to the end of esld a transplant and back again. I'm a failed responder twice on tx. Once in compensated cirrhosis stages before transplant had to be pulled of tx cause it worsened me my liver disease and threw me into decompensated cirrhosis stages a fast progression through esld stages needing a transplant. Pegasys after transplant and tx also failed. I had to be pulled of it I was stroking out. I am and with all my medical dx's the type of person that medically can not take the types of tx's now on the market.

I didn't fail the tx meds failed me. I am not a HCV victim. I have chronic HCV liver disease and post transplant at the time that medical science does not have all the answers or cures for me or others yet. It is not just with a dx of HCV medical researches and Dr's are only human too and we don't know yet how much of our body - mind and systems work yet or cures vaccines for many serious diseases or even the common cold.

I'm a very strong willed positive determined person. I'm a realist with enough of a medical background to understand and accept my dx's and short and long term prognoses all along the way. I fully understood accepted it and knew my life as I knew it would never be the same again. I did not admit defeat and never will but knew I had to adapt and adjust find ways to now live my new HCV life to it's fullest happy and content all along the way all stages pre and post transplant or allow my incurable HCV liver disease to win the final battle and war and live an unhappy

miserable life.

I was not about to lose a single precious day of my life no matter what.

Psychiatrists - therapists - counsels specialize have specialized training and are better in different fields types of therapy just like medical Dr's and the different fields of medicine they specialize and have more advanced training in and for pt's. There is specialized therapy counseling for pt's and spouses dealing with severe dx's and yes terminal dx's and HCV esld going through the process of listing for transplant and after care. Just like there are stages steps for grieving death loss of a loved one there are grieving stages and steps having a dx of HCV - esld listing for transplant and yes all the possibilities for pt and spouse.

I hear you I understand know what you are saying you are in early decompensated cirrhosis stages esld and on tx. There are stages grades to decompensated cirrhosis stages esld MELD and when to list for transplant.

Do you and your husband fully understand know enough about it all and accept it and your prognoses - how it all affects both of you - why you are on tx now your chances for clearing or lowering your viral load before a transplant and how HCV returns universally for 98% of people immediately after a clean HCV free liver transplant ????

Just the fact of you being in decompensated cirrhosis early esld has affected you totally all systems body wide brain mind and emotional state with high toxin levels. You are also on tx and in late stages rougher on you and your physicial and emotional state.

Both are kicking you ass body and emotional state big time and doing everything right being a strong willed strong positive person isn't enough to fight off all the affects of your dx's sides complications and on tx.

You need to find ways to adjust adapt you your lifestyle not just now harder while on tx meds making you more emotional but when off tx and the possibilities of all the stages of esld a transplant and all that goes along with it and for your husband too.

Reporting all the sides complications how we feel both mind and body is not admitting defeat or we have failed as a strong willed positive person. It is admitting yes I have HCV on tx in esld and It is kicking my butt as expected medically to do so.

Asking for the proper medical help and counseling is part of the medical processes having HCV on tx and in your case in esld. It is all a medical dx complications and you in need of the best and proper medical care and counseling to better proper you and your husband better ways for now and for the future and to live happy and content lives and lifestyles no matter what your HCV and life throws at both of you.

I was very lucky 20 minutes from me was the top medical Univ HCV Hepatologist prof reseracher team and Transplant Team and Hosp fully staffed and with the proper trained in-house therapists and counselers if needed dealing with all aspects all stages of HCV on tx - esld - and pre and post liver transplant care or in some cases when a transplant doesn't come in time.

I hope you and your husband find the proper trained therapist click have a good connection working relationship with them and find all the proper medical care and counseling for both of you.

Have you told explained to your hep dr and team all thats going on with you all sides how you really feel physicially emotionally and for with your husband too or trying to fight it go it alone and your own counseling referrals ???? Your Hep Dr and Team is specially trained and with proper referrals there to help support and counsel both of you.

Having a dx of HCV on tx especially in esld is not just dx's of the pt but involes their partners spouses too.

It's a team effort especially with esld high toxin levels affecting your mind and emotional state and on tx too. It is such a team effort if listed in the U.S. for a transplant the spouse or in-house with you pre and post transplant primary care giver is essential a must for listing for transplant part of a pt's transplant evals for listing. The esld pt and spouse or primary care giver must have a team effort the dedication strength will and determination to fully help support and be there for each other because the pt's physicial and mental state from complications and help needed after transplant they can not do it all alone.

All The Best To Both Of You and Everyone.

Damn spell check quit on me again - sorry brain don't see the errors either.

Deb