Heyyyyyy

[Guest guest]

Toots for decompensated cirrhosis you are doing damn good excellent and with being on tx.

You have so much on your plate medically now and for the future try not to become completely overwhelmed with it all. It all and for with you is very complex and will become even more involved complex as time goes by.

Stress and overwhelming stress is our enemy makes more problems complications and more so in late stages and esld.

Make and take enough time for you and to enjoy as much as possible too. Pace yourself take it all in a safe stride for you and just go with the flow 1 step and 1 day at a time.

We want need the latest and best medical care tx's testing.

If I was in your shoes and was but not on tx in decompensated stages I would also focus on the basics and basic labs too. No matter what viral load test measurement scale done the latest best 1 down to 10 or 50 it still is not a sophisticated test yet to a true 0 viral load. There is no sure exact test for that yet. If cleared from any tx's combo's trials it takes time many many years of being clear up to 10 to ensure still clear.

For you now any improvement in lowering your viral load is an excellent improvement.

I would also be focusing on complete lab panels and liver labs looking for high spikes can be in many 100's all of a sudden in ALT - AST - GGT etc........ signaling more liver problems or severe with you being on tx and making sure I had very routinely scheduled full complete lab testings panels.

In general viral loads the amounts and even liver labs alone are not a good indicator predictor of severity of HCV related liver disease or many other related complications and dx's. Up to 20% or more have no symptoms or indicating by liver labs late stages even early cirrhosis compensated stages. That's why HCV is called the Silent Epedemic.

It's the indivuidual pt's total picture total health dx's care total testing scans bx's maintanance follow-ups comparisions looking at slow progressions comparisons of labs scans for improvements or high spikes jumps in liver labs - labs - scans and for complications and progressions.

Many different scans - tests - labs - bx's are diagnostic tools used for our total complete and better health care and tx's.

HCV is a total body disease very complex and for our care and tx's.

We all wished it was a simple dx simple fix with simple tx's and a sure cure and vaccine to erridicate it.

For all of us fear of western medicine fear of Dr's can add much more overwhelming stress and cause much more harm than good.

I hope and pray you never need a life saving transplant but if so you need the hope faith and trust in your Dr's and Transplant Team with your life putting your faith life in their hands going into your transplant for your best outcome and survival.

We need that hope faith trust in them and will at all costs to survive to make it.

A transplant team all staff the units are so trained so advanced so state of the arts in medicine medical care it is mind boggeling even for other medical professionals. They have dedicated their lives hold peoples lives and livers in their hands to save lives.

They emotionally feel it all and with for us too and our families.

We need new better fairer organ donor listings allocations systems organ donor awarenesss to make it to our Transplant Teams and transplant.

We need fair allocations funding for HCV in medical research and for better safer care and tx's.

East has met West in forms of medicines research but if it was that simple and simple cures ways fixes we wouldn't have HCV - Cancers - deadly flu's - pandemics etc.... worldwide.

All The Best To Everyone

Deb

[Guest guest]

Okay, I guess it is my turn. Went to liver Dr on June 11th. said my liver enzymes were stable and I am doing great,,,,well you know great of what she says. I got the OK to take care of 2 hernias on August 10th at Mesa View Hospital in Mesquite, Nevada, and I'll be spending the night for precautions. Lets see, oh yeah as far as the Hep tx, she has decided for me to wait to the new drug coming out at end of this year or beginning of next. She wants me to walk everyday and swim.... I love to swim but I don't have a pool. Now there are lakes sometimes, if they have water, close by. She wants me to work up strength in my arms which are about jelly. All and all I feel pretty good and I REFUSE to give up and quit. Granted there are lots of days I want to sleep but I don't. The Dr told me that it is the cirrhossis that can make your sleep patterns backwards. My biggest

problem still is to poop more. I take 30-60ml of Lactulose 3 times a day. It has gotten where most of the time I can go a little a couple times a day, somedays a lot and other days, still can't go. Need to lose weight. It was 112 degrees today with about 40% humity. No one wants to walk. It is too hot. I wish I could swim all the time. That would be great. So I am eagerly looking forward to these surgeries and then one more boy, my baby, who is the big sports player has one more year of school. I am trying to get him scholarships and I don;t really know how. He 'll probably get and already has gotten a few letters from some colleges that are interested. But I know there is so much more. So I guess I am stable at where I am and doing great according to the Hep Dr. So I guess I'll see when I get my hernias removed, how I am from that. So anything I can do for anyone????? in Nevada You're braver than you believe, and stronger than you seem, and smarter than you think. - Robin to Pooh N in Nevada Subject: Heyyyyyy To: hepatitiscsupportgroupfordummies Date: Tuesday, July 7, 2009, 12:56 AM

Ok Honey your turn.

How are you - what's new - how did it go at your Hep Dr's appt in Vegas ????

I think you said it was hard to find a good Hep Dr or 1 that you had confidence in that was in Vegas ????

Are you still seeing your Hep Dr's in Calif - Transplant Team - did you go for evals recently - transplant ????

Curious what are your Hep Dr's recommending for you in esld - tx and did they say why and for what benefits ?????

I'm happy to see our members in late cirrhosis and esld discussing it all more in group. They are usually quiet about it all medical and emotional issues especially in esld. I have been told I'm scared to share in group don't want to scare members in early stages or just diagnosed.

That is the purpose and why we created this group open to members in all stages to discuss it all and for all members to learn from us with it for many decades our 1st hand experiences and support for each other in all stages all along the way.

All The Best

Deb