Hi I have HIV hep c gen 4 coinfection and chirosis. I have started interferon treatment but after only a week they say I may have to stop because of alarming plateletes counts. They are now schooling me on dying. All very efficient of them. But thing is I feel well and have some liver pain but low. I know my situation is serious but I sense a real tunnel vision in these doctors. No creative thinking or thinking outside the square.
Is there anyone who has any alternative ideas? I am willing to travel to meet anyone for advice. Surely there are free thinkers out there on this subject.
How low are your platelets ? When my GI wanted to have me stop due to low platelets I changed to a hepatologist in S.F. and continued.
Where do you live ?
If you're willing to travel there are many excellent doctors.
One who jumps to mind is Dr. Gish at UCSD and Las Vegas.
UCSF is another place to check out.
I'd suggest looking at this web site:
I am very sorry to hear that you are having some major difficulties with treatment and your health status.
I do not know the answers to your questions, but someone will. It may help them to better respond if you can provide more information.
Where do you live (which country, near which larger city)?
How long have you had cirrhosis?
Is it compensated cirrhosis(liver still able to function) or decompensated (liver not functioning well)? I assume compensated if you feel well.
Are you also receiving medications for HIV?
If you have copies of your lab results, can you please post those results.
Any other major medical problems besides the ones you listed ?
Anything else you can tell us would be helpful to the people who know more about a situation such as yours.
Also, there is another MedHelp forum specifically for people with cirrhosis. Here is the link to that forum:
Hi Scott. Thanks for posting. I think we have some good news for you.
Since you have a number of issues going on concurrently you really need the best medical help available. You don't happen to say were you live. Perhaps you can let us know. I am glad you have the right attitude to beat these challenges.
You need to be under the care of a hepatologist at a liver transplant center. They have the knowledge and experience treating others with the issues you have. If one of the largest transplant centers in near you, they will be experienced treating patients with HIV as well and hepatitis C. I can tell you that at my transplant center, UCSF, they do transplant patients with HIV so there is no reason and it is poor bedside manner for any doctor to ever tell you to prepare to die. They are WRONG. You still have options.
Back to your platelet issues. It is not uncommon for cirrhotics to have our platelet counts fall very low. If this happened after only a week then you may not be able to treat your hepatitis C at least with a treatment that contain interferon which is what causes the platelet count to fall. There are many of us with cirrhosis that are unable to treat because of our liver disease. But you can treat after transplant so all is not lost if that is the case. The main issues is for you to get the best care possible now. So you can stay as healthy as possible for as long as possible until you get a transplant.
If you can provide more information about how advanced your cirrhosis is, who has been treating you, and where you liver we can better help you.
I am listed for transplant at 2 transplant center so I can help you get through the process step by step as it can be confusing to someone who is not familiar with transplant center requirements, protocols and systems.
Here is a video from 2009. Although it is old it will give you some good info on transplant for patients with HIV.
"Dr. Peter Stock of UCSF presents an update on liver transplants for HIV positive patients a practice that has been considered experimental."
Hang in there.
(I have HCV, End-Stage Liver Disease and liver cancer (HCC) and hope to get a transplant within the next 6 months here is San Francisco).
Here is an abstract of an article of a study my hepatologist helped design and oversaw that was recently published in "Liver Transplantation"
Volume 18, Issue 6, pages 716–726, June 2012
Hepatitis C virus (HCV) is a controversial indication for liver transplantation (LT) in human immunodeficiency virus (HIV)–infected patients because of reportedly poor outcomes. This prospective, multicenter US cohort study compared patient and graft survival for 89 HCV/HIV-coinfected patients and 2 control groups: 235 HCV-monoinfected LT controls and all US transplant recipients who were 65 years old or older. The 3-year patient and graft survival rates were 60% [95% confidence interval (CI) = 47%-71%] and 53% (95% CI = 40%-64%) for the HCV/HIV patients and 79% (95% CI = 72%-84%) and 74% (95% CI = 66%-79%) for the HCV-infected recipients (P < 0.001 for both), and HIV infection was the only factor significantly associated with reduced patient and graft survival. Among the HCV/HIV patients, older donor age [hazard ratio (HR) = 1.3 per decade], combined kidney-liver transplantation (HR = 3.8), an anti-HCV–positive donor (HR = 2.5), and a body mass index < 21 kg/m2 (HR = 3.2) were independent predictors of graft loss. For the patients without the last 3 factors, the patient and graft survival rates were similar to those for US LT recipients. The 3-year incidence of treated acute rejection was 1.6-fold higher for the HCV/HIV patients versus the HCV patients (39% versus 24%, log rank P = 0.02), but the cumulative rates of severe HCV disease at 3 years were not significantly different (29% versus 23%, P = 0.21).
This article again emphasis that importance of the transplant center understanding were the risk factors are when it comes to co-infected patients, and trying to mitigate them as much as possible for the best outcome.
Liver transplants in HIV-HCV co-infection—results from a U.S. study
3 May 2012
The American National Institutes of Health (NIH) is the world’s largest biomedical research organization, both funding research and carrying it out. Thanks to NIH funding, researchers in the U.S. have conducted a study of carefully selected HIV-positive people who were also co-infected with hepatitis C virus (HCV) and who needed a liver transplant. After the transplant and an average of three years of monitoring, researchers found that 60% of participants were still alive. By contrast, among a similar group of HCV-mono-infected (HCV infection alone) participants, three-year survival rates after a liver transplant were about 80%. The NIH study has yielded important information that could be used by transplant teams to improve the survival of HIV-HCV-infected people who need a liver transplant.
Starting in 2003 and ending in 2010, researchers across the U.S. recruited 89 participants who were HIV positive and who were co-infected with HCV. All participants were ill from complications due to severe liver damage.
For the purposes of comparison, the study team compared reviewed databases that had collected health-related information from other groups of people, including those with HCV mono-infection (235 participants).
This report focuses on co-infected people.
At the time the co-infected people entered the study, their average profile was as follows:
age – 49 years
75% men, 25% women
body mass index (BMI—an assessment of body weight relative to a person’s height) – 25
liver cancer – 34%
common HCV strains or genotypes present (genotypes 1 or 4) – 80%
co-infection with hepatitis B virus (HBV) – 3%
CD4+ count – 283 cells
undetectable HIV viral load – 88%
The use of potent combination therapy for HIV (commonly called ART or HAART) was suspended shortly before surgery and then resumed when recipients began to recover—they could swallow medications, their overall condition had stabilized and the functioning of key organs such as the kidneys had improved. In most cases, ART was resumed within a week of surgery. Usually the same regimen used prior to transplantation was reinitiated.
In eight cases there were combined liver and kidney transplants. Kidney transplants were needed because some participants’ kidneys were dysfunctional for a number of reasons, as follows:
higher-than-normal blood pressure
other causes (such as cardiovascular disease)
Results – Survival
One year after transplantation, survival rates were as follows:
HIV-HCV co-infection – 76%
HCV mono-infection – 92%
Three years after transplantation, survival rates were as follows:
HIV-HCV co-infection – 60%
HCV mono-infection – 79%
In general, after organ transplants, bacterial infections are common in the first month, particularly in surgical wounds. In the present study, deaths were often due to bacterial infections that had overwhelmed participants, leading to blood poisoning and failure of vital organs. Deaths arising from bacterial infections were more common among co-infected people.
None of the deaths among co-infected people arose because of AIDS-related infections or cancers. Furthermore, having a pre-transplant history of such infections/cancers did not affect survival after transplantation.
The only factor that was associated with an increased risk of death was HIV infection.
As the transplanted organ comes from a different person, there is a risk of the recipient’s immune system attacking the new organ. Such attacks are called “rejection,” as the immune system rejects the organ. To minimize episodes of rejection and damage to the new organ, recipients of transplanted organs are given drugs to help weaken their immune systems. Yet a balance in the level of immune suppression must be found, otherwise the immune system will become too weak and the risk of developing serious infections (and subsequently dying) increases.
In the present study, low doses of one the following transplant medicines were used:
cyclosporine (Neoral, Sandimmune)
The levels of these drugs in the blood must be regularly assessed, particularly once participants resume ART, as transplant drugs can interact with protease inhibitors and non-nukes (NNRTIs) and vice versa.
In cases of an episode of rejection, a change in immune-suppressing medicine could be made, another transplant drug such as mycophenolate mofetil (CellCept) could be added, or corticosteroids could be used. The transplant team attempted to avoid the use of very powerful immuno-suppressing drugs (such as antibodies that attacked the immune system), unless the episode of rejection was severe.
Even with good care and adequate immune suppression, sometimes the transplanted organ, or graft, can suffer damage as it increasingly comes under attack by the immune system. Researchers found that the following factors placed co-infected participants at significantly increased risk for severe damage to the graft:
receipt of two transplanted organs (liver and kidney)
having a BMI at the start of the study of less than 21
receipt of an organ from a donor who was infected with HCV
Overall, seven out of eight participants who received both a liver and kidney died.
Co-infected people who did not have these three factors had survival rates similar to those seen among HIV-negative people aged 65 years or older in the U.S. who received an organ transplant.
Survival did not change over the course of the study.
Women and participants who had severe episodes of rejection were more likely to have had severe HCV-related liver damage.
Episodes of acute rejection that required treatment were more common among co-infected people (39%) compared to people with HCV mono-infection (24%). About half of the episodes of acute rejection among co-infected people happened within the first three weeks after transplantation.
Most (82%) co-infected people who developed acute rejection were treated with corticosteroids. HIV infection was the only factor linked to having an acute episode of rejection within the first month after transplantation.
Changes in assessments of HIV disease
Compared to their pre-transplant levels, CD4+ cell counts at different points after transplant were as follows:
six months after transplantation – 83 less cells
12 months after transplantation – 11 less cells
36 months after transplantation – 2 less cells
This trend shows that the immune systems of co-infected people gradually recovered from the trauma of major surgery and the impact of immune-suppressing drugs.
Cases of fungal infections occurred as follows:
3 cases of yeast infections of the throat and mouth
2 cases of yeast infections of the lungs
All five participants recovered when treated with anti-fungal drugs.
One person developed Kaposi’s sarcoma (KS) lesions on his skin. When doctors changed his immunosuppressant drug to sirolimus (which appears to also have some anti-KS activity), his lesions cleared without further treatment.
Upon entering the study, 11 participants had detectable levels of HIV in their blood samples. Three months after transplantation, 10 of these 11 participants had an undetectable level of HIV. The 11th person had detectable HIV for several more months but his last viral load test was less than 50 copies/ml.
Overall, 78 participants entered the study with an undetectable level of HIV in their blood. Of these, 14 participants (18%) had “two or more consecutive detectable [HIV viral load tests after transplantation].”
These detectable bouts of viral load ranged between 7,000 and 43,000 copies/ml. At their most recent lab test, nine of these participants had detectable viral load. This was likely due to inflammation and activation of their immune systems brought about by an episode of rejection of the graft.
The research team made these points in evaluating its research:
Survival three years after liver transplant is reduced in HIV-HCV infected people compared to people infected with HCV alone who have also received a liver transplant.
Care must be taken to select the right donors of organs. In the present study, researchers found that organs from people with HCV or from older people were less likely to thrive once transplanted into co-infected patients. This finding is important, as a similar result has not been found in HIV-negative people who receive an organ from HCV-positive people.
Early referral for evaluation for transplantation and using living donors are likely to shorten the time spent on a transplant waiting list. Reduced wait times will likely result in better chances of survival after transplantation.
Relatively high rates of acute rejection occurred among co-infected participants. The study team thinks that this problem occurred because participants were given low doses of immune-suppressing medicines. This was probably due to the transplant team being wary of weakening the immune system to a dangerous degree.
The study suffered from a relative weakness: The type of ART used was not standardized and neither was there a uniform regimen for suppressing the immune system. The study team suggested that newer drugs, such as the HIV integrase inhibitor raltegravir (Isentress), may be useful in HIV-positive patients undergoing organ transplantation in the future, as this drug is not likely to interact with immune-suppressing medicines (and vice versa).
The results of the present study provide a useful experience that organ transplant centres can use when managing the medical needs of HIV-HCV co-infected patients in the future."
Hi Hector Thanks so much for all your great comments and suggestions. I will need time to digest. I live in Brisbane Australia but if I need to travel and pay in SF then of course I need to Australia has a very good public health system).
I will also take your extremely kind info to my doctors and ask what they feel. You are also correct I need all my results I realised this after I posted. I was just alarmed when I the doctor was so into death at such a stage. He though is not the head doctor and I have yet to have her opinion, she is well regarded but as you point out she may not be the right person for me.
I'll get back to you with more info next week BUT again you have already been an amazing help. many thanks Scott
Hi Orphanedhawk Again thanks so much for your post. I feel much better that others are chipping in and helping. I'll post more info next week when I get form the hospital. I live in Brisbane, Australia.
More Hepatitis C and liver transplantation Australia resources:
Hepatitis Queensland is a not-for-profit, non-government, community organisation. We provide:
A FREE confidential telephone information and support service
FREE counselling with a registered psychologist; face-to-face or over-the-phone
Education and training to organizations, schools and businesses
Support groups and information evenings and events
FREE brochures, fact-sheets, DVD's and newsletters on viral hepatitis
and much, much more
We are open from Monday to Friday, 9am-5pm (except public holidays), and our services are free and confidential.
People also do volunteer work with Hepatitis Qld and can make tax-deductible donations.
If you do not live in Queensland you can contact the local Hepatitis Council in your state or territory. The national peak body for all these councils is Hepatitis Australia, which is based in Canberra.
THE TRANSPLANTATION SOCIETY OF AUSTRALIA AND NEW ZEALAND
ORGAN TRANSPLANTATION FROM DECEASED DONORS:
CONSENSUS STATEMENT ON ELIGIBILITY CRITERIA AND ALLOCATION PROTOCOLS
Version 1.2 — 16 May 2012
Liver transplantation units
Adult transplantation 16 May 2012
NSW Royal Prince Alfred Hospital, Sydney
VIC Austin Hospital, Melbourne
QLD Princess Alexandra Hospital, Brisbane
SA Flinders Medical Centre, Adelaide
WA Charles Gairdner Hospital, Perth
NZ Auckland City Hospital, Auckland
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