Re: Hi Ya and Hubby/Deb

[Guest guest]

I do tell Mayo everything and they said to go see my psychiatrist who

told us it was not the medication but that we did need marriage

counseling as if I didn't know that already LMAO. What shocked me was

that it was not all Allan fault! Sheesh that was a wake up call and I

thought dang just another piece of bullshit I have to deal with with

a plate full of crap already " sigh " Hey if it will stop the arguments

I need to do it. " Cha Ching " another $105.00 I would rather have

spent on anything but this.

Oh we know what to expect in a positive as well as a negative sense.

I chose to do Tx for 6 months but was convinced to do 7 months. No I

have not told Mayo I doubt very much I will do a year of this poison.

I said we will talk about it in another 5 months.

I am preparing for the worst. I found a home for my parrots which I

have had for 20 years. I am training an Assistance dog, a huge

beautiful Blue Doberman and I have a scooter which will allow me to

shop etc all day with friends and not peter out after an hour. I was

having a hard time getting out of bed in the morning but there is

nothing like puppy breath and kisses to get me up and keep me busy

all day training so I am getting TONS of exercise now I am

adjusting as I progress on this journey into hell.

I am different Deb there are exceptions to every rule. I have read

the STATS on this being successful, healing my liver and completely

avoiding transplant. It does happen and for some reason I just feel

it will be me too. As far as dying while trying...hey we all have to

go sometime and I will most definitely do my best not to have that

happen. My future is pretty bleak so death does not frighten me at

all. Being crippled and dependant on others for the rest of my life

would not only be death to me but a tortuous death.

PS you had no spelling errors unlike me

>

>

> 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

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