treatment with portal hypertension

Do some start treatment after being diagnosed with portal hypertension?
Sister in other state saw transplant team who told her they will monitor blood work
from her local ENT every 3 months and to come back in one year....????
This seems very passive to me.  Her health is declining.

(Posted this first in the social community forum, oops)

[HectorSF]

Yes, portal hypertension does not preclude hepatitis C treatment. Portal hypertension is a matter of degree like all things. So it depends on how much portal hypertension she has. If her portal hypertension were servere the center would be worried about internal bleeding of varices. Is she on a beta-blocker such as Propranolol or Nadolol. If they only want to see her yearly, she must have a relative early stage of cirrhosis and portal hypertension.

It is generally only when a patient decompensates or has a MELD score over 20 that they can't be treated with current treatment therapy.

What transplant center is she being seen at?
What is her MELD score?
Who is going to treat her hep C?

Unfortunately with liver disease, unless the cause is stopped, it is a progress illness. While people can feel better at times the liver is destroyed more and more over time and symptoms and complication get worse.

Who is screening your sister for liver cancer with an ultrasound and AFP blood test? Is it every 6 months or 12 months?

"Her health is declining."
What do you mean exactly? Most patients with early cirrhosis have no symptoms of liver disease.

I am sorry for your sister's situation. If you can answer some of the question above I can maybe help more.

Hector

[pooh55811]

"Do some start treatment after being diagnosed with portal hypertension? "
-------------------------------

Which treatment are you talking about here.

Are you asking if some people start treatment for Hepatitis C after being diagnosed with portal hypertension? (Treatment meaning treatment with Interferon, Ribavirin, and a Protease Inhibitor if she has Genotype 1)

OR  

Are you asking if some people start treatment for their liver after being diagnosed with portal hypertension?

[springfever]

Thank you for responding.  Hector, she lives near Dallas TX and recently had her first visit for evaluation for transplant at Baylor, I think.  I don't yet know her meld score or some other ??'s you asked but I will find out.  Thanks for letting me know what to ask.  

She has begun to develop ascites.  Her weight is dropping significantly.  She does not have varices.  She sees a local ENT, in a small town, that has no experience treating HepC.  No biopsy has been done.  (Guess there is no need if they know you're stage 4).

I am asking about interferon treatment.  And wondering how many here began treatment after cirrhosis.  I treated at stage 3 and svr'd 2 years ago, but she is facing a very different set of circumstances.  

Thanks for your help.

[crossroadsec]

I treated after being diagnosed stage 4, grade 4. I had ascites drained and also portal hypertension.
Baylor is a great center. My transplant team treated me. I was supposed to do 48 weeks, but made it to 43 before a varices bleedout. They did 2 sonographys to check the portal valve before and during treatment. Triple therapy can be hard. High doses of Nadolol have kept me from bleeding out again.
I have another banding of esophageal varices next week. Please keep us posted on your sis. You're a good brother... Karen:)

[coeric]

i am experiencing cirrhosis and finished 48 weeks of triple therapy in August.     prior to treatment i had a trans jugular liver biopsy.  at the same time the hepatic vein pressure gradient was measured.  mine was 12 mm and normal is 4mm.  then the hepatologist had me do a endoscopy to check for varices. i had grade 1 which were too small to band.  the doc said that they see cirrhotics treat and either during treatment or shortly after treatment they may rupture a varice.  so they like to check for varices and treat them prior to treatment.  compensated cirrhotics should only treat at a transplant clinic because treatment can cause the liver to decompensate. Baylor has a great reputation.
blessings
eric

[Upbeat]

They are doing trials now with the new DDA'S that take  portal hypertension people. Here is one

ClinicalTrials.gov Identifier:
NCT01687257

[Upbeat]

My Bad   should have said DAA  Direct acting antivirals.

[springfever]

thanks Karen.  I am having trouble contacting my sister so don't have much more info, but wanted to thank you and Hector for taking time to help when you are engaged in battle yourselves.  Were you able to clear the virus with treatment?
Parents said my sister's enzymes were too low for treatment.  I feel better knowing its the dr's decision not to treat and not hers.  It would not be unlike her to decline.  I also want to encourage her to join in here for the wonderful support.
Thanks for the vote of confidence.  I'm her little sister but feeling more like a protective older sibling right now.  
God bless.

[springfever]

Thanks to everyone for sharing your story.  I have a better understanding of her condition now.  I'm going to encourage her to look at the clinical trial.  thanks upbeat.  

[HectorSF]

She should be having all of her future care supervised by Baylor. If the ENT can perform blood tests of other routine basic care fine but she is very ill and only a transplant center can help her with her current stage of liver disease I am afraid.

You are correct there is no need for a biopsy as she has the complication of advanced cirrhosis.

Unfortunately ascites is usually the first sign of decompensation. She may be too ill to treat her hepatitis C. That can only be determined after a full evaluation at Baylor. Unfortunately if she has decompensated cirrhosis her liver disease is irreversible and a liver transplant may be her only option at this point. Let us that is not the case.

Even if her disease have progressed too far there is hope so never be confused about that. A liver transplant can allow her to recover her health and lead a relatively normal life. It is just a very difficult journey to get a transplant. It sometimes can take years. But it all depends on how her liver disease progresses which varies from one individual to another. Ir is not predictable.

I am awaiting a transplant in the next few weeks so I know what is in store for your sister. Unfortunately it will be a difficult period of her life. The best thing you can do is support her as much as possible. While liver failure is difficult it is possible to survive but it will talk a lot of medical and emotional support. I am very sorry if this is the case. I hope that maybe she is still healthy enough to rid herself of the virus and perhaps stop further damage to her liver.

I would recommend your sister join a transplant support group at Baylor so share experiences. No one understands what a person goes through when dealing with potentially fatal liver disease than another person going through the same thing.

Balyor Support Groups and Services
Social Work Support Services

Psychological and social support are critical for successful outcomes for our transplant patients. As part of the pre-transplant evaluation process, the transplant patient and their immediate family members will undergo a complete psychological and social assessment to determine how best to mobilize resources and communicate patient needs to the multi-disciplinary transplant team. The social worker is also on hand to assist the patient and family in anticipating and planning for the transplant.

Support Groups

Peer support groups are available for our transplant patients and families. Co-led by staff and volunteer transplant patients, these groups are an invaluable resource and provide meaningful support during the evaluation, waiting, transplant admission and post-transplant phases. Patients and families benefit from education and fellowship with others who have been through the same transplant experience.

For more information call:214-820-2050

Best wishes to you and your sister!
Hector

[springfever]

Thank you Hector,
I will encourage her to take advantage of the support group and pass it along to my parents as well.  I know that there are great difficulties ahead.

I appreciate your time and thoughtfulness and am praying for your good, good success with upcoming surgery.