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enstage chirrhosis with hep c
I was diagnosed in 2008 with endstage chirrhosis, hep C , geno type 3 went thru treatment and virus gone for a little bit and back in 2011. My GI Doctor says he wont put me back through the treatment again because I suffered so through the 9 months I did. last year diagnosed early varices, my spleen is enlarged, and my liver has hardened. I now have iron overload and skin blisters are on my feet and arms they are very itchy and painful and bleed. They tell this will not go away. I have been told its all up to the good Lord now-what the heck kind of response is that? I feel the stigma attached to the Hep C keeps you from getting proper treatment. Im 55 and was awarded my Social Security last April. I have never been put on a transplant list nor ever assessed anyone else experienced this??
no I dont know my MELD score but Im starting all over with Doctors and making it like a new diagnosis I believe because they donot have all my medical records from another state there has been alot of confusion. I too rely on my higher power and I believe this has truly been whats kept me going I dont take the word of Doctors and research everything. thank you for the words of encouragement and I really am thankful for this site it has given me new hopes in fighting ever harder to get the care I deserve. Good luck and your all in my prayers.
Glad you quit drinking! That's is the only reason I am alive myself. I've had Hep C for probably 30 years and diagnosed with cirrhosis 8 years ago when first diagnosed with the Hep C. I quit almost 16 years ago because I was a real alcoholic and was only able to do it with God's help. Had I not quit when I did, I would have been dead long before I had a chance.
My hepa tells me to be kind to my liver and to let her worry about my health and go live my life. I have three kids (21, 11, and 5 yo) and it freaked me out, "what's gonna happen if I die?" God told me, not to worry, that he would take care of everything. Not a religious person, don't go to church myself and don't have anything against it either, just not for me. But my faith in a higher power and daily prayer and meditation has brought me so much peace.
So my advice for what it's worth, find the proper medical care that you deserve, be kind to your liver, live your life every day!
Good luck and keep coming back, this is a great group of people!
Chris
p.s. - do you know what your MELD score is?
My hepa tells me to be kind to my liver and to let her worry about my health and go live my life. I have three kids (21, 11, and 5 yo) and it freaked me out, "what's gonna happen if I die?" God told me, not to worry, that he would take care of everything. Not a religious person, don't go to church myself and don't have anything against it either, just not for me. But my faith in a higher power and daily prayer and meditation has brought me so much peace.
So my advice for what it's worth, find the proper medical care that you deserve, be kind to your liver, live your life every day!
Good luck and keep coming back, this is a great group of people!
Chris
p.s. - do you know what your MELD score is?
I did stop drinking and they told me I had had hep c maybe for 10 to 20 yrss. I never showed any symptons until i became ill and they ran bloodwork for the hep virues in 07 I get confused on my exact dates partly from age and the disease its self. I dont do drugs. have appt today with GI and have alot of questions and I want answers. God gave us people to heal us and the knowledge to do it. I depend on all of it! Dont give up on church there are lost ones out there and you will find a good one dont give up.I know right and they even bill medicade and medicare when others get the healthcare free. I believe the Indians are not doing what is right because of the millions of dollars given to them by our government to run these so called Indian Hospitals. You hang in there and together maybe we all can change the way people are treated and cared for. I hate to say it but I had better healthcare in the south and I thought they were behind Oklahoma. They do still care about folks there.
HI I commented on frustrated , now Im reading your posts. I see you do have an Indian Card. Kewl. Usually they treat people good. We have a Indian Hospitol in Talahina OK (spelling) hey a girl I worked with did a L.D.T.P on Indian Insurance or thru Oklahoma City (not sure) I know there are NO hepatologist near where we live! Period, None in FT.Smith None in Fayetteville that I am aware of. Might be 1 in Tulsa. There is one way out in OK city. Not sure if they will take Indian Insurance. But I believe they can refer you out to special care. Ill look into it for ya and see what I can kick up.
Sorry you are a geno 3. It is sometimes hard to find trials for 2's n 3's expecially late in the game. When is last time you had a biopsy??? Some trials are taking people late in the game.
One of my church members told me to pray about it and live my life right and ask god to heal me and if I did all that he would heal me. Then he had to go get his steroid shot for his bad back from the doctor??? I have not been back to church since... We do live in the bible belt. And its ok to beat your wife... she is property
Sorry you are a geno 3. It is sometimes hard to find trials for 2's n 3's expecially late in the game. When is last time you had a biopsy??? Some trials are taking people late in the game.
One of my church members told me to pray about it and live my life right and ask god to heal me and if I did all that he would heal me. Then he had to go get his steroid shot for his bad back from the doctor??? I have not been back to church since... We do live in the bible belt. And its ok to beat your wife... she is property
thank you so much and I have been told more here then by any Doctor I have seen. I think they have had me seeing too many doctors and the right hand does not know what the left hand is doing. I will be scheduled for another endoscopy tomorrow to see how much further the varices has progressed. Havent had any bleeds yet but i know its coming. I think the scariest part is having to find all this out on my own and now thru others like yourself. You have been a great help and Im praying for you....I will find a hepatologist the one I knew of is not accepting anymore patients and wouldve been close to me. I live on 787.00 social security and will get medicare starting in August. I fired my primary because all she told me was i was beyond transplant and was bill medicade for weighing me,blood pressure and temp and couldnt even write me anything for pain. I think its going to be worth the search for a good Doctor who has my best interest at heart and not so much the money...Indian healthcare is government run hospitals and they scare me to death because they are known to push the older patients back to treat the younger ones who have a better chance of living. sad but true. They referred me to a dermatologist last yr mind you for July 25th of this year for the skin blisters i have because of iron overload so you tell me to have faith in...LOL! I get so frustrated i want to just give up and cant. I will be 55 this Sunday and would love to be able to just live my life again without this worry but I know the eventual outcome. Im not scared but I dont want to die because I cant seem to get the help i deserve. I will call the numbers provided and thank you so much.was diagnosed endstage when I had liver biopsy done in South Carolina where I lived at the time now what I have researched it could be dangerous to undergo another biopsy. I have other propblems too have Rheumatoid arthritis,de-generative bone disease,allergic to ALOT of medications had gall bladder removed, have had the brain fog episodes so I keep lactulose on hand and take ,lasik for the fluid,raw spots in my stomach so Im afraid they have overlooked me too long but Im not giving up! I fought 3 yrs to get my retirement and with the help of my church I got the care I needed at the time.I will be gathering all my medical records myself so i will know what the doctor has to refer to and now I will get my records from South Carolina where this all first started.On palpatation my GI said my liver has hardened and i know whats coming ...
You need to stop seeing doctors that are not qualified to help you. You should have been listed when you developed End-Stage Liver Disease (ESLD) 4 years ago. ESLD is fatal! If you value your life you will seek out the proper care. Medicaid should pay for your treatment so don't worry. Take it one step at a time. We will help you through it.
Are you sure you have End-Stage Liver Disease? Who said you have ESLD? Have you had bleeding varices, ascites (fluid retention of the abdomen), hepatic encephalopathy (mental issues)?
Are you on SSI or SSDI. I would think SSI.
As everyone said, you MUST to be under the care of a hepatologist at a liver transplant center. There is one in Oklahoma City which I am told is good. Only a hepatologist at a transplant center can get you listed and help you to maintain your health while you wait for a transplant. The sooner you get listed the better. Remember your very life is dependent on getting the best care possible before, during and after transplant. If you truly have ESLD you can no longer treat your hepatitis. It is too late I’m afraid. No that is a none issue at this point.
There is hope. You just need go get yourself organized so you will be ready for what is going to happen in the future. I am listed at two centers myself and am waiting for a transplant. I also have liver cancer. You should have imaging done every 6 months. When you developed cirrhosis you now have an increased chance of liver cancer. Only a transplant center can perform the proper surveillance for liver cancer (HCC). So again you must go to a transplant center. No other hospital can help you.
Here is a link to the OU transplant center.
Oklahoma Transplant Center - 940 NE 13th Street - 405-271-7498, 1-888-777-7081
Just east of The Children's Hospital at OU Medical Center on 13th Street
Free Valet parking available for patients & their families
The Oklahoma Transplant Center at OU Medical Center
Comprehensive liver, pancreas and renal transplant for both adults and children
The Oklahoma Transplant Center (OTC) is the comprehensive solid organ transplant service at OU Medical Center and The Children's Hospital. The team, led by Anthony Sebastian, MD, brings together Oklahoma's most experienced transplant team-a team with more than a half-century of combined experience in liver, pancreas and renal transplantation for adult and pediatric patients. We believe that the close collaboration with an academic medical center provides a tremendous benefit to patients and has redefined how solid organ transplants are performed throughout the state and the region. This close collaboration creates a unique combination of progressive patient care and advanced medical research that adds a new dimension to the transplant process.
The transplant program is supported by leading clinics in kidney disease and liver disease, including hepatitis B & C, cirrhosis and liver cancer.
Types of patients accepted for consultation:
• Patients with acute liver failure, liver disorders and cirrhosis
• Liver cancer patients for liver transplant or surgical resection or ablation
• Patients with liver masses or suspected tumors both primary and metastatic
Oklahoma Transplant Center at OU Medical Center
(405) 271-7498 | 888-777-7081 | FAX (405) 271-1772 | www.outransplant.com
Good luck!
Hector
Are you sure you have End-Stage Liver Disease? Who said you have ESLD? Have you had bleeding varices, ascites (fluid retention of the abdomen), hepatic encephalopathy (mental issues)?
Are you on SSI or SSDI. I would think SSI.
As everyone said, you MUST to be under the care of a hepatologist at a liver transplant center. There is one in Oklahoma City which I am told is good. Only a hepatologist at a transplant center can get you listed and help you to maintain your health while you wait for a transplant. The sooner you get listed the better. Remember your very life is dependent on getting the best care possible before, during and after transplant. If you truly have ESLD you can no longer treat your hepatitis. It is too late I’m afraid. No that is a none issue at this point.
There is hope. You just need go get yourself organized so you will be ready for what is going to happen in the future. I am listed at two centers myself and am waiting for a transplant. I also have liver cancer. You should have imaging done every 6 months. When you developed cirrhosis you now have an increased chance of liver cancer. Only a transplant center can perform the proper surveillance for liver cancer (HCC). So again you must go to a transplant center. No other hospital can help you.
Here is a link to the OU transplant center.
Oklahoma Transplant Center - 940 NE 13th Street - 405-271-7498, 1-888-777-7081
Just east of The Children's Hospital at OU Medical Center on 13th Street
Free Valet parking available for patients & their families
The Oklahoma Transplant Center at OU Medical Center
Comprehensive liver, pancreas and renal transplant for both adults and children
The Oklahoma Transplant Center (OTC) is the comprehensive solid organ transplant service at OU Medical Center and The Children's Hospital. The team, led by Anthony Sebastian, MD, brings together Oklahoma's most experienced transplant team-a team with more than a half-century of combined experience in liver, pancreas and renal transplantation for adult and pediatric patients. We believe that the close collaboration with an academic medical center provides a tremendous benefit to patients and has redefined how solid organ transplants are performed throughout the state and the region. This close collaboration creates a unique combination of progressive patient care and advanced medical research that adds a new dimension to the transplant process.
The transplant program is supported by leading clinics in kidney disease and liver disease, including hepatitis B & C, cirrhosis and liver cancer.
Types of patients accepted for consultation:
• Patients with acute liver failure, liver disorders and cirrhosis
• Liver cancer patients for liver transplant or surgical resection or ablation
• Patients with liver masses or suspected tumors both primary and metastatic
Oklahoma Transplant Center at OU Medical Center
(405) 271-7498 | 888-777-7081 | FAX (405) 271-1772 | www.outransplant.com
Good luck!
Hector
Does the Indian heath care system have social workers. They can be a big help finding progams for people. Do not give up! I know it seems overwhelming .
Try phoning the
Oklahoma Transplant Center - - 405-271-7498, 1-888-777-7081
Explain your situation and ask for help.
Good luck
Oklahoma Transplant Center - - 405-271-7498, 1-888-777-7081
Explain your situation and ask for help.
Good luck
Could there be a university or teaching hospital in Tulsa or Ok City? Tests and so forth at a clinic would be on a sliding scale according to income. Many of the drugs may be provided by the drug companies via their Patience Assistance Programs. The drive to Ok City looks like a couple hundred, four hundred round trip, a bit of an ordeal. It would be worth it... Tulsa is about an hour away... Hopefully some more tangible ideas will be given. The University hospital and PAP is the kind of tx I get and I don't have Medi-anything or SS, ha, I'm broke. Yet I'm treating for the second time. There is a solution out there for you. Meanwhile get your answers and slap some people around if you have to! All the best
I do so much research but the healthcare system is so overloaded and I have only so much available to me I plan on getting some straight answers im tired of being BS ed around...
talked with a Dr last evening and have not been referred to a hepatologist Im at the mercy of medicade and Indian healthcare here in tahlequah oklahoma. Most the time I have to find out whats going on with me through hours of research and frustrated because yes I do know what i need and it was my GI Dr who said the part about the good Lord. I stopped drinking in 08 and contracted hep c from late husband when diagnosed they said it appeared I had had the disease for 10 to 20 years. trying like heck to stop drinking.. Dont do drugs! Im just going by what Ive been told and believe me i have seen some quacks...they refuse to give me pain meds and at this point I would just rather enjoy what time I may have and not in any pain. I know where Im going when i leave this earth and thank you all for your comments and ideas.
How long ago did you quit drinking? Smoking doesn't help, but it shouldn't be a show stopper if it comes down to it. There is no stigma attached to Hep C and if there is screw 'em, tell it came from an operation long ago. Was it your doctor or other people who made the crack about it being in the Lord's hands? If it was the doctor, run. Especially since he didn't suggest alternatives. He's out of his depth plain and simple. If you are a believer then it's always in the Lord's hands, everything, always but it doesn't mean we get to sit by passively while life happens to us. There is a joke about a man who prayed everyday for years to win the lottery. Finally one day during prayer God said, 'Look I don't mind you winning the lottery but before I do anything you have to meet me halfway and buy a ticket first.' You have to follow the advise given above, look for a specialist. Keep posting, people can give you ideas where to look and how to apply, answer questions, and pull you through this but you have to do the leg work. No one can toss you aside to die unless you let them. There must be alternatives to your current situation. Keep us informed.
you need to go to a hepatologist. they'll be better able to answer your questions and ease your concerns. good luck. belle
Where do you live?
Where I am there is no or very little stigma attached to hep C, my hepatologist is a scientist, doesn't talk to me about God.
He talks to me about my health, especially my liver's health.
You need to see a hepatologist, a liver specialist, not a GI.
As crigger mentioned you need to be listed at a transplant center, now, actually, yesterday.
There are things to help with some of you symptoms. However, your liver doctor needs to help you with that. We are not doctors.
Where I am there is no or very little stigma attached to hep C, my hepatologist is a scientist, doesn't talk to me about God.
He talks to me about my health, especially my liver's health.
You need to see a hepatologist, a liver specialist, not a GI.
As crigger mentioned you need to be listed at a transplant center, now, actually, yesterday.
There are things to help with some of you symptoms. However, your liver doctor needs to help you with that. We are not doctors.
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