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)
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.
"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)
Are you asking if some people start treatment for their liver after being diagnosed with portal hypertension?
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.
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:)
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.
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.
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.
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 those that don't read the entire article, the conclusion is....
In contrast, achieving SVR and eradicating HCV, not just receiving interferon therapy, is associated with a marked reduction in inflammation and fibrosis regression. The future of HCV treatment is to suppress HCV with multiple oral antiviral agents without interferon and/or ribavirin. This approach has already been demonstrated to achieve high rates of SVR with various combinations of antiviral agents. 45-49
The observations of the present study strongly suggest that fibrosis regression including resolution of cirrhosis will occur in the vast majority of patients who will achieve SVR with these future therapies.
Very interesting and timely information. Thank you for sharing. I know many here will definitely find this article a source of hope that one day the damage done by the Hep C virus will be a distant memory.
I guess the question is how much regression could one expect if they have for example grade 4 fibrosis=cirrhosis? As well as Child A vs Child B or C status. I imagine the greater the damage the less likelyhood of having a fully functional liver. I have some portal hypertension as evidenced by esophageal varicies that required banding. Not sure if I will be able to regain that level of lost function.
But of course SVR is a good thing no matter what. At least SVR can hopefully stop any future decline in liver function.
Waiting on my 12 week results only 8 weeks to go till I can test.
Wow. Have read that article before in a summary, but not in full text. My Hepatologist has confirmed those results since starting treatment, and they really give you amazing hope. As noted in another post, I have already seen improvement on my CT Scan since the start of my meds in Jan, 2014.
Lynn, I also have cirrhosis and it does depend on the severity of the damage. From what you have written, I think that you are still early enough to benefit from SVR down the road as far as regression.
Thanks Pam for sharing
I haven't ever done a CT scan just abdominal ultrasounds.
Got my most recent result this week and as compared to 6 months ago my spleen has continued to enlarge from 14 something to 15 something (sorry dont have it in front of me) which was an increase of about 1.2 cm. I was on treatment for three of the months between ultrasounds.
My platelets are in the 80's to 90's. So yeah sure hoping I am clear and that my liver improves it would be wonderful to have normal platelets again.
I'm so excited for you. You're almost there!!!! I just know I'm going to be a jumble of nerves waiting the 12 wks. After treatment. If your unelected at the end of treatment, wouldn't that that be a strong indication of success? Hoping you get great news an I'll be following your post closely. Take care. Mary
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