Cirrhosis or something else

[maa60]

My husband has chronic hep c,cirrhosis,enlarged spleen, hypothyroidism. He can't keep anything down. He throws up all day at various times, sometimes he eats maybe 1/4 of his meal and is running to the bathroom to vomit and its pretty forceful. His Dr. isn't helping says liver biopsies are not reliable and won't do anything to help. He is losing weight 20 lbs in 2 months and now another 10 just recently. Not sure what to do?

[flyinlynn]

Hi mas

No worries there is a lot of crossover between the hep c group and cirrhosis group but since your interest is cirrhosis they will probably have more in information for you there.
Here is a link to the other group
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

Good luck
Lynn

[zarmar]

This link just came today.  I had heard that there has been a push to involve PCP (primary care physicians such as family doctors, internal medicine, etc,) in treatment directly   This is important in rural areas and underserved populations where there is no access to specialists.  This may give you another option if your husband feels he is falling through the cracks with his current hospital program.

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6318a2.htm

[zarmar]

maa6 - - a thought in case your husband doesn't have a PCP.  With no insurance, he may not and so he is dealing with hospital bureaucracy and specialists without a health champion at his side.  If you live in a community with a community health center, technically a Federally Qualified Heath Center (FQHC), this may be a resource.  FQHC provide primary care for uninsured and underinsured patients. There may be a $5 or $10 co-pay - not sure.  FQHC can do primary care evaluations for your husband, routine blood tests, referrals, and ongoing follow-up.  A PCP can help you maneuver through the hospital system and make care and service connections your specialists won't likely know about.  Have you been to an FQHC or know of one?

[nan535]

Does your husband receive Social Security Disability? I ask this because you mention that someone worked 26 years and paid into the SS system (not sure if you meant yourself or your husband).

http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm
See 5.05 Chronic liver disease

They will automatically enroll you in Medicare after you get disability benefits for two years. The two parts of Medicare they will  enroll you in are hospital insurance and medical insurance.

    Hospital insurance (Part A) helps pay for inpatient hospital bills and some follow-up care. The taxes you paid while you were working financed this coverage, so it is free.

    Medical insurance (Part B) helps pay doctors' bills, outpatient hospital care and other medical services. You will need to pay a monthly premium for this coverage if you want it.

http://www.ssa.gov/dibplan/dapproval4.htm

[maa60]

Thanks type O and Hector.Sorry new to this and didn't realize I was on Hep C site. I have applied several times to get medicaid, cannot afford Insurance, was turned down for medicaid now  we have a hearing for medicaid. I do understand how expensive all of this is and I guess thats why I'm not sure what to do. We have never been considered poor however when you work 26 yrs and pay into the system of SS and then you get sick and can't work, seems very easy for middle class to get into this very situation. Thanks for all your points and I will check into the cirrhosis site.

[HectorSF]

“Not sure what to do?”

Repetitive vomiting is an indication that something is very wrong. The problem will could get worse as time goes on. Since you have no insurance, he should go to the hospital that is providing the charity work and get seen by a doctor ASAP. Not only could vomiting be a sign of an underlying serious condition or illness but it will cause a person to become dehydrated, lack nutrition and lead to poor health. For someone with cirrhosis this can lead to serious, even life-threatening complications. Go to the hospital or ER tomorrow.

Your husband doesn’t need a liver biopsy to determine the stage of his liver disease it is already known he has cirrhosis of the liver.

“tumor marker that came back at 49 high”

What does the doctor say about his AFP tumor marker level?

You are probably not aware that people with cirrhosis, especially cirrhosis caused by hepatitis C or alcohol have an increased risk for developing liver cancer? That is why they tested his tumor marker for liver cancer. Liver cancer is unfortunately a very deadly form of cancer. If the cancer is not detected early and treated early it is usually fatal. Proper surveillance which must be done every 6 months while a person has cirrhosis is costly and treatment can cost many tens of thousands of dollars to hundreds of thousands of dollars. Assuming the cancer can be controlled by palliative treatments (as the only cure in cirrhotics is a liver transplant) he will need a liver transplant to continue living and that will cost many hundreds of thousands of dollars.

End-stage liver disease or liver cancer are unfortunately two very deadly and extremely expensive diseases to treat. I've had both diseases along with hepatitis C and the cost of all of my treatments plus my liver transplant has cost over $1.5 million dollars so far. After transplant and recovery people who have undergone liver transplant must take expensive drugs every day for the rest of there lives. Have monthly blood tests for the rest of their lives. And other tests such a biopsies and scans and doctor visits for the rest of their lives. How could anybody not a multi-millionaire afford to pay for all of this medical care without heath insurance?

“Not sure what to do?”
Get health insurance ASAP.

Unfortunately without health insurance the chances of obtaining good quality health care in this country is limited. Living with cirrhosis of the liver without good health care is a frightening proposition. That is why you feel correctly that you are “falling through the cracks”.

If you are poor and unable to afford health care insurance, you should apply for Medicaid to obtain health insurance.

In the future you may want to post in the Cirrhosis community as the issues you mention are cirrhosis related (liver disease) not hepatitis C issues.

Good luck to you and your husband!
Hector

[Type0]

You sound well educated and your husband is getting treatment he needs. At this point, try the diet interventions. You have to find those few things he can still eat and feed him with the spoon if you have to. You can also try Insure or HiCal supplements if he lost so much weight. Start with very simple basic foods, such as bros or low fiber soup, clear liquid diet, make sure he is hydrated and gets electrolytes. Then add one thing at a time as tolerated. Mash potatoes, and fluids from the potatoes after you boil it to drink. See if he can tolerate milk, wit serial, oatmeal. Think about him as a baby. Try baby food if you have to. He may have inflamed bowels. Ask your MD for Zofran for nausea, see how he can control his vomiting. He is about to face difficult electrolyte imbalance, and with it his condition will deteriorate. Try to find a food that he can tolerate for now. Try to rule out other causes of bowel upset.  

[maa60]

Thanks

[maa60]

He has no insurance. He is being seen at a very reputable hospital that does transplants. I have requested another dr but have not been able to get one. We are in a charity care program at this facility and have no place else to go. He has had an endoscopy and colonoscopy a few months ago and they found nothing to cause the vomiting.In Dec they found the Cirrhosis and enlarged spleen and varicose in his stomach leading to liver. We both feel like they aren't doing what they should be but not sure what that is either. His liver function test are all high as well as his glucose, he has a tumor marker that came back at 49 high but not extreme. platelets are low. Feel he is falling threw the cracks.

[Type0]

I meant hepatologist.

[Type0]

Sorry to hear your husband has difficult time with his health. The best way to look up the treatment regimen is to type in "Cirrhosis standard of care" or "Cirrhosis treatment guidelines". There are "must have" tests and evaluations that his doctor should order if it was not done. If you feel that your husband is not getting proper care, the best way would be to find another gastroenterologist, or better- hematologist. Go to the Gastroenterology Specialists or any local gastroenterology group and look up doctors' profiles. It would say what they specialize in. When they get new patient, they usually would do full work up. Your husband should be evaluated for the liver cancer. Also vomiting may be related to other issues. Cirrhosis by itself should not cause vomiting. He may have something else, in that case endoscopy would be indicated. I assume- the doctor did all needed lab work. You should insist on the proper patient education. You should be explained in details what is going on and what your doctor is suspecting and planning to do. As I said earlier, you may consider another specialist. You also can take your husband in ER and they will admit him if they find him sick or order proper evaluation.    

[maa60]

He is not on any treatment and his viral load is in the 800,000,000

[maa60]

confused about the stages of hep c as well

[gibsongal]

sorry to hear..i would get a second opinion.