Hep C / liver failure

[MargaretKolar]

My brother had had Hep-C for many years without symptoms. He did not get treatment because he did not have health insurance. He is disabled and now has Medicare and is likely eligible for Medicaid. He was waiting for new interferon-free treatment to be approved. While waiting he started becoming anemic every few weeks to the point of needing transfusion. Doctors could not determine the reason for anemia. He had EGD's performed twice and colonoscopy. They never did find a source of bleeding.

About 6 weeks ago he developed acites, which he had drained a couple of weeks ago, but it came right back. His Gastroenterologist has referred him to a scirrosis specialist who comes to Las Vegas only a couple of times a month from LA. His appointment with this specialist is not until after Christmas. Over the past two weeks my brother is becoming sicker and sicker. He is able to eat only small amounts because of the pressure on his stomach from the acites. He vomits. He has ongoing diarrhea. He  he has developed very painful hemorrhoids. In summary, he is seriously ill and miserable.

He does not wish to go to hospital, which I suspect is where he belongs. But I really don't know what they can do for him anyway except IV fluids. I am amazed how little knowledge there is about this condition in the Las Vegas health community.

I am suspecting he is in need of transplant now if it is not too late. This procedure is not done in Las Vegas area. I don't know where to go or what to do.

I am his full sister. I am in good health and am the same blood type as he is. I might be a match as a donor. But have no way of knowing.

I feel this is urgent. Please, any insights from anyone?

[rpooo]

Hello Margaret and welcome to MedHelp. I am very sorry to hear about your brothers condition. As Hector and Nan mentioned his condition is very serious and immediate treatment should be considered. A hepatologist (liver specialist) is the type of doctor needed. If you find it will take to much time to get him set up with one consider seeing a gastroenterologist (digestive specialist) to assist and stabilize his condition were as it is possible to see a hepatologist.

This is a difficult thing to go through and we are glad to help as much as possible with your questions along the way. Take care and I wish you the best.

Randy

[MargaretKolar]

Dear Hector,

Thank you so very much for your response.

I agree my brother is not getting adequate care. I think it's because his  his condition is outside the area of expertise of his caregivers. What type of specialist should we be looking for? Transplant specialist? Cirrosis specialist? Is there such a thing as a hepatologist?

The doctor who comes to Las Vegas twice a month who my brother has been referred to is Dr. Kayali. He sees patients at Digestive Associates in North Las Vegas. I do not know exactly what his specialty is or where he is associated in LA. I will call tomorrow and ask the questions you suggest. I will also investigate CPMC.


Am I reading correctly that you had a transplant one month ago? If so, congrats. I am sure you are still recovering from a large operation and again I thank you for caring about others.

With gratitude,
Margaret

[HectorSF]

Your brother needs to be seen at a liver transplant center as soon as possible. They are the only doctors that can help someone with advanced liver disease which is all of the complications you mention. Ascites is usually the first sign of decompensated cirrhosis which can be irreversible liver disease. Meaning he will need a liver transplant at some point to continue living. Internal bleeding is also a sign of decompensated cirrhosis. This is very serious and life-threaten condition that needs immediate attention.

"He is able to eat only small amounts because of the pressure on his stomach from the ascites."
He needs to have another paracentesis and if not already be put on diuretic medicines and a low sodium diet to manage his fluid retention.

Your brother is not receiving adequate medical care for the seriousness of his illness.

It is true that there are no liver transplant centers in Nevada so he will have to go to another state if he should need a transplant and my need to either have local care in association with a liver transplant center in another state or he may have to travel there if his condition is bad enough.

What hospital is this doctor he will see after Christmas?
Is the doctor from a hospital that is a LA transplant center?
I would call the doctor and tell her/him what issues your brother is experiencing now (indications of decompensated cirrhosis-internal bleeding, ascites) and he needs to be seen ASAP.
Otherwise I would recommend calling the doctor's LA hospital and telling them that your brother is very ill (describe the symptoms) and tell them that he needs to see someone soon. You must be pro-active and get these doctors to realize your brother liver condition is getting worse and could be life-threatening without proper care.
NOTE: This time of year many doctors will be taking holiday vacation BUT this won't prevent a patient that needs to be hospitalized from being treated and stabilized. So if this doctor isn't available someone else with be filling his role at the hospital.

Another resource in Las Vegas for people with advanced liver disease is California Pacific Medical Center, which is based here in San Francisco. They have a clinic in Las Vegas.
3820 S. Hualapai Way, Las Vegas, NV 89169
415-600-3414, Liver Disease & Transplant
http://www.sutterpacific.org/locations/outreach/3820shualapai.html

To learn more about CPMC and their Liver Disease & Transplant services please see the web sites below.
http://www.cpmc.org/advanced/liver/physicians/outreach.html

"Through our extensive network of liver regional offices, our liver specialists provide care close to home at 13 sites in Northern California and Nevada. Our doctors have a close relationship with these local communities and with local doctors. Our regional offices and hepatologists are part of Sutter Pacific Medical Foundation, a group of 240+ doctors who offer primary, specialty and complex medical care.

Among the services we offer at our liver regional offices include:
Liver transplant evaluation, pre and post-transplant care
Liver disease and liver cancer management
Management of fatty liver, autoimmune, genetic and metabolic liver disease
Hepatitis B and C disease management
Clinical trials for hepatitis B and C and fatty liver disease"

I don't have direct experience with CPMC but I have know patients who have been treated by them and they all have liked the liver transplant services they have received.

Since you brother has Medicare, hopefully Medicare plus Supplemental Insurance and a Part D drug plan he can go anywhere in the US that accepts Medicare.

This is a difficult situation because of where your brother lives. He will need assistance if he is in LA or anywhere else and gets on the transplant waiting-list so hopefully he knows people there who can be his caregivers or you or someone and be with him when he is hospitalized. Hospitalization can be frequent when a patient develops decompensated cirrhosis and needs a liver transplant.

I hope this helps.
Best of luck.
Hector
Liver transplant at UCSF  11/16/2013

[nan535]

Welcome to the forum.  You are in the right place as there are many knowledgeable people here who can give you excellent advice and information.

Your brother needs to be evaluated by a liver transplant center, as soon as possible. I checked this website:
http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LI
I saw that there are none in Nevada.

When my husband needed a transplant sooner than he would get it in our home state, we decided to relocate to another state that had an excellent transplant center and where he has family.  He too has Medicare and was transplanted at a hospital that is Medicare approved.

You may want to look into that option. The website lists every transplant center in the country.

All the best to you and your brother.
Nan