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health actions

What health actions should be occuring now that my symptoms have progressed? My symptoms are that my liver is leaking potassium through the capillaries in my liver and fluid is following it going into my stomach. They have put me on lasix and aldacorte (both diretics) since April of this year. They are not doing anything to get it stopped. I have had a liver viral load test done and all I was told was it was 26, I have no idea what that means and I haven't been able to get anyone to go over the lab results from that test or what any of it means. I feel like I need to find another doctor near me in southeast kansas. If anyone can shed some light for me or guide me in the right direction I would be very grateful. I do not have insurance, but I am working on trying to get social security. I know I want to know exactly where I stand with my disease.
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446474_tn?1404424777
You have cirrhosis that is decompensating. So you are in the final stage of liver disease. Commonly called End-Stage Liver Disease (ESLD). It time you will need a liver transplant. No one can say how long before your need a transplant as each individual progresses at different rates.

You need to be under the care of an experienced hepatologist (a liver specialist) as they are the only doctor that is qualify to treat someone with ESLD. You need to get a referral from your primary doc or gastroenterolgist to be seen at a transplant center. You should look for a doctor at a transplant center near you as you need to work with them as your disease progresses and you have more and more debilitating complications of liver failure. The problem will be that without insurance it is going to be very difficult to find the help you need. Living with ESLD is very expensive. For common meds, tests, doctors it will cost many tens of thousands of dollars per year. Once you get on Medicare or Medicad they will pay most of it but the will be many thousand of dollars of co-pay you will need to pay. Although I don't know all the details of Medicad they may pay as is for poor people with little or no assets and are unable to work.

Only a doctor who is treating you can tell you "exactly where you stand with your disease".
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I personally would not recommend Saint Luke’s as they just started liver transplantation in June of this year. So there is no data to show they have a successful program. As liver transplant is a very complicated procedure I wouldn't put my life in the hands of a program that hasn't worked out all the bugs in these operations. But that is just my opinion.
https://www.saintlukeshealthsystem.org/service/transplant-services/liver-transplant

http://www.kumed.com/default.aspx?id=1288
The Liver Transplant Program at The University of Kansas Hospital has completed more than 780 liver transplants since it began in 1990. Our program is recognized as one of the regional leaders in liver transplantation.

To be considered as a liver transplant candidate, individuals must first get a referral to The University of Kansas Hospital Liver Transplant Program. The referral can be provided by a primary care physician, gastroenterologist, hepatologist or other health care provider.

After the referral is received, and the financial coordinators determine that The University of Kansas Hospital is approved by a patient's insurance to perform the transplant procedure, the patient will be seen by a liver transplant hepatologist and the pre-transplant nurse coordinator.  The transplant hepatologist will determine if the patient is a possible candidate for transplantation. If so, an evaluation will be scheduled.

It is important that the transplant team know as much as possible about a potential liver transplant recipient to determine their acceptability for transplantation. The transplant team needs the following information:

*Alcohol And Drug Rehabilitation
*Insurance Information
Most insurance carriers now have contracts with certain health care providers.  The first step in a patient's evaluation is to have their insurance carrier information assessed by our transplant financial coordinators, who will determine if an individual can be transplanted at The University of Kansas Hospital. Patients can contact one of our transplant financial coordinators any time after they are referred, to clarify any questions one may have regarding insurance coverage or discuss other available payment options for the transplant.
Your Medical History

For additional information about making referrals, please contact the Liver Transplant Program at The University of Kansas Hospital at (913) 588-1227 or toll-free (800) 332-6048."
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So you are saying you are experiencing ascites is that correct?
Fluid retention in the abdominal area?
"liver is leaking potassium through the capillaries in my liver " Ascites has nothing to due with leaking potassium from your liver. I am not sure where you heard that.
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"What is ascites?
http://www.medicinenet.com/ascites/article.htm#what
Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm.
he most common cause of ascites is advanced liver disease or cirrhosis. Approximately 80% of the ascites cases are thought to be due to cirrhosis. Although the exact mechanism of ascites development is not completely understood, most theories suggest portal hypertension (increased pressure in the liver blood flow) as the main contributor. The basic principle is similar to the formation of edema elsewhere in the body due to an imbalance of pressure between inside the circulation (high pressure system) and outside, in this case, the abdominal cavity (low pressure space). The increase in portal blood pressure and decrease in albumin (a protein that is carried in the blood) may be responsible in forming the pressure gradient and resulting in abdominal ascites.

Other factors that may contribute to ascites are salt and water retention. The circulating blood volume may be perceived low by the sensors in the kidneys as the formation of ascites may deplete some volume from the blood. This signals the kidneys to reabsorb more salt and water to compensate for the volume loss."
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For the diuretics, or "water pills," (Lasix & spironolactone (Aldactone) to help remove the fluid you must limit the about of sodium/salt in the diet (no more than 2,000 mg/day). Otherwise the diuretics will not work and you will continue to retain fluid. That means no restaurant food (it has tons of salt) or processed foods such as canned soups, most canned food and any frozen food. You need to eat plenty of vegetables and fruits and get protein from plant and chicken or fish. No red meat like beef. Beef and red meats will cause another complication of cirrhosis called Hepatic Encephalopathy (HE) where your thinking will become slow, you will have a poor memory, but uncoordinated and in the worse case go into a coma.

You have decompensated cirrhosis the final stage of liver disease. Your liver is unable to perform all of its functions and that is why you are experiencing bloating of the abdomen. You may also notice fluid retention in your feet, ankles and lower legs.

I am not sure if you are applying for SSDI, Social Security Disability Insurance or SSI. If you are applying for disability you will not receive Medicare until 2 years after they say you first become disabled.

Good luck!
Hector
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Thanks for responding. The deal about the potassium leakage I heard was from a doctor. I'm not sure I get what you are saying about end stage liver disease. My labs still stay I have good liver functions tests and my enzymes are still good. I had blood tests done 2 weeks ago. This is the first sympton besides fatigue that I have had. I don't even know what else to to ask of my doctor to better educate myself more so I can pursue better health care. I haven't even had a liver biopsy yet.

Thanks again, I take anything I can look into.
Sharon
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Sharon,  I am not sure what you mean:  "This is the first symptom besides fatigue that I have had"  What symptom are you referring to?  If you are referring to the "leakage" as in your earlier email, this is something to be very concerned about.  Perhaps you could show Hector's email to a significant other or your doc and ask them to help you understand what is going on.  It may be that the doc was a bit too technical and needs to explain what is happening.  It does not make sense that you would not have had a liver biopsy but you may want to ask your doctor about that too.  Could it be that it was discussed but it was difficult to understand or remember?  Again, a close friend or family member coming to the appointments could help to understand these things which can be quite complicated.  This is the best health care you can give yourself.
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1654058_tn?1407162666
Hector and curiouslady are spot on, Sharon. Your symptoms came on exactly like mine did with ascites. My enzymes weren't even that bad. But more tests, Dopplar, n a biopsy told the whole story. It's really shocking, I'm sure.
I looked so healthy that when I entered the hospital for an MRI, the staff thought I was just pregnant n asked when I was due. Become active in your progress. Sometimes the info can be overwhelming. Begin to eat healthier liver lovin diet. Reread Hector's post. haha. Really. This forum is a wealth of knowledge... I am just now learning a  lot myself. I'm a believer in the treatment now offered. I'm also the cheesy cyber hug lady. xoxoxo Karen :)
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Hi everyone, thanks for all the input it really helps guide me in areas I don't know but need to know. I just realized that I said it was potassium leaking but it is the protein. I just had potassium on the brain because at first the gave me the lasix without potassium to protect my kidneys. Many people told me I was supposed to have that with long term use of dieretics (including a doctor) but they wouldn't give it to me until I complained. That's when he gave me the other dieretic that works with lasix and protects my kidneys and liver.
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someone told me there was a place in Texas that does a lot of testing for new medicines for hep c, does anyone have any information on the place? I also have a question about getting approved for social security for hep c. I have been trying to get this for 2 years with no success. I received a letter yesterday that they may want me to go to an exam, last time they did this they didn't check anything to do with my liver. they checked to see if I could flex my hands and feet forward and backward and to the left and to the right, and of course I got denied because I can do that with no problem. Any suggestions?
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1747881_tn?1358189534
No sugestion on SS but this link will show you all of the open clinical trials for new hcv drugs in TX


http://clinicaltrials.gov/ct2/results?term=hepatitis+c+AND+texas&recr=Open
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