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Diagnoses
Hello everyone,
My question is this, I was diagnosed with Cirrhosis of the Liver and not in a very good way. It was three years ago I had just endured a failed 19 year marriage and was staying with my sister in California. I was really sick one day with the utmost pain I have ever felt one thing lead to another and I'm having surgery for a kidney stone which was far too large to pass. I was in recovery barely out of surgery still very, very grogy from the medication and the doctor swung his head inside the door and said he got the kidney stone out and by the way you have "Cirrhosis of the Liver" and immediately left. My daughter was standing there and I looked up at her and said "what did he say, is that bad, where did he go, can't I ask him questions? The nurse ran and got him. He said he really is not the one to diagnose me, but he knows of a great liver specialist. I have ulcerative colitis and hep C and hpv. I guess you could say I didn't give a rip when I was in my early 20's which was in the 80's. Needles to say I had lost my insurance due to my divorce even though I qualified for Social Security Disability and deemed Disabled for the rest of my life. I've gone into the ER 4 times since then and now I can barely walk. I varies, swollen stomach & legs, ankles and feet, slight tempature everyday my lower right side is a constant pain. My mucus that I try and cough up is so thick it chokes me and I am unable to cough it up, one time I did and the mucus was green, it is as thick as peanut butter, it's just horrible. I have daily headaches, my feet get cramps and my calves get cramps and my memory is so bad we can have this conversation an in an hour or even less I won't remember if I sent this out or not. If I don't speak of something I"m thinking of right now, I will forget it. When I am trying to tell you something, there are times in the middle of what I'm trying to say I can finish the conversation. I don't drive anymore because I'm afraid of dangering other's and myself, because I'm extremely dizzy and I fall down all the time. I have that flapping of hands thing and there are times when I fall I can't get up, it's as if my knees don't work anymore. It took for men to try and pick me up. I tried to get out of the pool and I couldn't, I sat there and cried, about 30 minutes later I tried again and finally got out, but it was excruciating and my knees immediately bruised. The whites of my eyes are a very strange blueish greg, not yellow or brown, it's a very ugly cloudy blueish grey. My last visit to the ER which would have made my visits to the ER 4 times. I'm being treated by my GP because I can afford to pay for an office visit and he has read my blood count that were taken twice at the ER and has proscribed me a Diruectic, Tramadol for my pain and that's about it oh no Prosac for depression since my failed marriage of his infidelities and have opt to live in our home till I do pass away. I've never seen this female dr. before and I left there crying, she told me I didn't have cirrhosis and that she can't help me. I was there 6 hours, no fluids, nothing. What are your thoughts? Please help me understand.
My question is this, I was diagnosed with Cirrhosis of the Liver and not in a very good way. It was three years ago I had just endured a failed 19 year marriage and was staying with my sister in California. I was really sick one day with the utmost pain I have ever felt one thing lead to another and I'm having surgery for a kidney stone which was far too large to pass. I was in recovery barely out of surgery still very, very grogy from the medication and the doctor swung his head inside the door and said he got the kidney stone out and by the way you have "Cirrhosis of the Liver" and immediately left. My daughter was standing there and I looked up at her and said "what did he say, is that bad, where did he go, can't I ask him questions? The nurse ran and got him. He said he really is not the one to diagnose me, but he knows of a great liver specialist. I have ulcerative colitis and hep C and hpv. I guess you could say I didn't give a rip when I was in my early 20's which was in the 80's. Needles to say I had lost my insurance due to my divorce even though I qualified for Social Security Disability and deemed Disabled for the rest of my life. I've gone into the ER 4 times since then and now I can barely walk. I varies, swollen stomach & legs, ankles and feet, slight tempature everyday my lower right side is a constant pain. My mucus that I try and cough up is so thick it chokes me and I am unable to cough it up, one time I did and the mucus was green, it is as thick as peanut butter, it's just horrible. I have daily headaches, my feet get cramps and my calves get cramps and my memory is so bad we can have this conversation an in an hour or even less I won't remember if I sent this out or not. If I don't speak of something I"m thinking of right now, I will forget it. When I am trying to tell you something, there are times in the middle of what I'm trying to say I can finish the conversation. I don't drive anymore because I'm afraid of dangering other's and myself, because I'm extremely dizzy and I fall down all the time. I have that flapping of hands thing and there are times when I fall I can't get up, it's as if my knees don't work anymore. It took for men to try and pick me up. I tried to get out of the pool and I couldn't, I sat there and cried, about 30 minutes later I tried again and finally got out, but it was excruciating and my knees immediately bruised. The whites of my eyes are a very strange blueish greg, not yellow or brown, it's a very ugly cloudy blueish grey. My last visit to the ER which would have made my visits to the ER 4 times. I'm being treated by my GP because I can afford to pay for an office visit and he has read my blood count that were taken twice at the ER and has proscribed me a Diruectic, Tramadol for my pain and that's about it oh no Prosac for depression since my failed marriage of his infidelities and have opt to live in our home till I do pass away. I've never seen this female dr. before and I left there crying, she told me I didn't have cirrhosis and that she can't help me. I was there 6 hours, no fluids, nothing. What are your thoughts? Please help me understand.
COMMUNITY LEADER
You must seek out proper medical care before your liver disease gets any worse.
The first step is to get proper/adequate medical care which apparently you have not been getting with your current doctor.
You say you are on “Social Security Disability” and deemed Disabled for the rest of your life. If you are on either SSI or SSDI you are qualified to receive either Medicare, a Federal health plan (after waiting 2 years since being declared disabled by SS) or help through you state’s Medicaid system. Because you live in Texas there may be restrictions of your ability to receive properly health care unfortunately you will have to find out what is available to you in that state. Here is California our state funded health care it is called MediCal.
Understand Kidney stones have nothing to do with cirrhosis. What ever symptoms you had pain, etc. had nothing to do with your liver.
“My mucus that I try and cough up is so thick it chokes me and I am unable to cough it up, one time I did and the mucus was green, it is as thick as peanut butter, it's just horrible”. Colored mucus is a sign of an infection not a symptoms of liver disease. Any doctor that can’t explain that to you is incompetent to say to least.
“I varies, swollen stomach & legs, ankles and feet, slight temperature everyday my lower right side is a constant pain.”
If you have been diagnosed with avarices and peripheral edema or ascites you probably have cirrhosis as these are common symptoms of cirrhosis. Other common symptoms of cirrhosis are a low platelet count, enlarged spleen, nodular liver surface, Diuretics are commonly given to patients to help manage the build up of fluids that cause swelling of the abdomen and lower legs and feet.
“memory is so bad we can have this conversation an in an hour or even less I won't remember if I sent this out or not” is a sign of Hepatic Encephalopathy a common complication of cirrhosis. You should be being with Lactulose and perhaps Xifaxan (Rifaximin). HE requires a proper diet (no red meat) and medication. People with HE can become disoriented and go into a stupor and even a coma which can be deadly without proper treatment and management.
Also since you have cirrhosis you are at a higher risk of developing liver cancer then most people. This means you need to have regular screening tests for liver cancer (HCC) every 6 months. Like many forms of cancer it has no symptoms until it is usually too late to treat.
So as you can see there are many things that need special care because you have cirrhosis. Only a doctor who works with other patients with advanced liver disease know how to manage your illness and all of its complications.
So being under the care of a hepatologist is vital to having good outcomes. The people I’ve know that did not have adequate and proper care for their cirrhosis typically have poor outcomes. Meaning they usually don’t live very long before something goes wrong and medical intervention is too late.
You need to contact a liver transplant center and get an evaluation of your liver disease. Waiting for help when you already have indications of advanced cirrhosis is never a good idea. Cirrhosis will only get worse over time. At some point unless your cirrhosis can be reversed you will need a liver transplant to continue living so it is best to get proper care sooner rather than later when you liver begins to fail more and more and its complications become more life-threatening.
Be well.
Hector
The first step is to get proper/adequate medical care which apparently you have not been getting with your current doctor.
You say you are on “Social Security Disability” and deemed Disabled for the rest of your life. If you are on either SSI or SSDI you are qualified to receive either Medicare, a Federal health plan (after waiting 2 years since being declared disabled by SS) or help through you state’s Medicaid system. Because you live in Texas there may be restrictions of your ability to receive properly health care unfortunately you will have to find out what is available to you in that state. Here is California our state funded health care it is called MediCal.
Understand Kidney stones have nothing to do with cirrhosis. What ever symptoms you had pain, etc. had nothing to do with your liver.
“My mucus that I try and cough up is so thick it chokes me and I am unable to cough it up, one time I did and the mucus was green, it is as thick as peanut butter, it's just horrible”. Colored mucus is a sign of an infection not a symptoms of liver disease. Any doctor that can’t explain that to you is incompetent to say to least.
“I varies, swollen stomach & legs, ankles and feet, slight temperature everyday my lower right side is a constant pain.”
If you have been diagnosed with avarices and peripheral edema or ascites you probably have cirrhosis as these are common symptoms of cirrhosis. Other common symptoms of cirrhosis are a low platelet count, enlarged spleen, nodular liver surface, Diuretics are commonly given to patients to help manage the build up of fluids that cause swelling of the abdomen and lower legs and feet.
“memory is so bad we can have this conversation an in an hour or even less I won't remember if I sent this out or not” is a sign of Hepatic Encephalopathy a common complication of cirrhosis. You should be being with Lactulose and perhaps Xifaxan (Rifaximin). HE requires a proper diet (no red meat) and medication. People with HE can become disoriented and go into a stupor and even a coma which can be deadly without proper treatment and management.
Also since you have cirrhosis you are at a higher risk of developing liver cancer then most people. This means you need to have regular screening tests for liver cancer (HCC) every 6 months. Like many forms of cancer it has no symptoms until it is usually too late to treat.
So as you can see there are many things that need special care because you have cirrhosis. Only a doctor who works with other patients with advanced liver disease know how to manage your illness and all of its complications.
So being under the care of a hepatologist is vital to having good outcomes. The people I’ve know that did not have adequate and proper care for their cirrhosis typically have poor outcomes. Meaning they usually don’t live very long before something goes wrong and medical intervention is too late.
You need to contact a liver transplant center and get an evaluation of your liver disease. Waiting for help when you already have indications of advanced cirrhosis is never a good idea. Cirrhosis will only get worse over time. At some point unless your cirrhosis can be reversed you will need a liver transplant to continue living so it is best to get proper care sooner rather than later when you liver begins to fail more and more and its complications become more life-threatening.
Be well.
Hector
I have very similar situation. Harvoni cured the Hep C then I got liver cancer. Caught very early, I had an ablation to fry the tumor.
You really must address the HE. I take Xifaxan 2x daily and will need to forever. Everyone will disrespect you and make life miserable when you are so forgetful. Also, lactulose is really gross but keeps the ammonia out of your bloodstream/brain. If you don’t manage your care yourself, you’ll probably get worse. You have to do it yourself. Depending on first 1Dr, then another you won’t be getting comprehensive care.Take charge and insist you get the help you need.
Best of luck!
You really must address the HE. I take Xifaxan 2x daily and will need to forever. Everyone will disrespect you and make life miserable when you are so forgetful. Also, lactulose is really gross but keeps the ammonia out of your bloodstream/brain. If you don’t manage your care yourself, you’ll probably get worse. You have to do it yourself. Depending on first 1Dr, then another you won’t be getting comprehensive care.Take charge and insist you get the help you need.
Best of luck!
Thank you Dee1956 & Hector, I am very grateful for both of your responses and support and advice. I saw a Liver Specialist 3 yrs. ago In Calif. when I was staying there due to my divorce. I was told yes indeed you do have cirrhosis, she briefly pricked an poked my abdomen and then said, my Hep C levels are very low so that was good she said and then told me she wanted to see me in 6 months.
I was back at home in Texas 6 months later naturally I've gotten worse, but as of the 1st of Dec. 2016 I got my Medicare & Medicaid for my 20% that Medicare doesn't pay, so I do have full coverage.
I just saw my GP on the 5th for him to write up my referrals, he told me the girls at the front office would call me when there ready, two weeks later which is today and learn they never got to my referrals. I'm so frustrated, but I've learn to not react, getting mad gets me no where Living down here. This is my colon doctor and we have a great rapport and he has a funny personality, great bedside manner and I know I'm in good hands, I'll be picking up my referrals tomorrow since I was unable to get to the doctors office today. Thank you so much Dee & Hector for you suggestions and support, I'll keep in touch.
I was back at home in Texas 6 months later naturally I've gotten worse, but as of the 1st of Dec. 2016 I got my Medicare & Medicaid for my 20% that Medicare doesn't pay, so I do have full coverage.
I just saw my GP on the 5th for him to write up my referrals, he told me the girls at the front office would call me when there ready, two weeks later which is today and learn they never got to my referrals. I'm so frustrated, but I've learn to not react, getting mad gets me no where Living down here. This is my colon doctor and we have a great rapport and he has a funny personality, great bedside manner and I know I'm in good hands, I'll be picking up my referrals tomorrow since I was unable to get to the doctors office today. Thank you so much Dee & Hector for you suggestions and support, I'll keep in touch.
1 Comments
Can I donate blood with cirrohsis?
Hello I am sure someone will be along soon to help out, in the mean time I am sending you a link to take a look at to see that people are being helped with Harvoni, Gilead, the drug manufacturer is still offering help to people who can't afford the medication. You should be able to get on Medicare 2 years after you were approved for Social Security Disability.
In the mean time I know people who have very little income who have been able to get a subsidy for their insurance through the affordable care so perhaps you were misinformed of the cost to you. Each person has to check into it themselves as each person will be different.
I hope you can get some care asap. You really should try to call a hospital that has a transplant team. There are phone numbers for nurse support and advice at many of these places.
I am sorry you are doing so poorly. Have you been able to get any testing done in the 3 years since you found out you had cirrhosis?
The new treatments are not as hard as the older ones.
I hope someone else will come along soon. You really need to be under the care of a liver specialist as soon as possible.
In the mean time I know people who have very little income who have been able to get a subsidy for their insurance through the affordable care so perhaps you were misinformed of the cost to you. Each person has to check into it themselves as each person will be different.
I hope you can get some care asap. You really should try to call a hospital that has a transplant team. There are phone numbers for nurse support and advice at many of these places.
I am sorry you are doing so poorly. Have you been able to get any testing done in the 3 years since you found out you had cirrhosis?
The new treatments are not as hard as the older ones.
I hope someone else will come along soon. You really need to be under the care of a liver specialist as soon as possible.
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