Aa
Scared and more scared
i had a biopsy in 2007 which confirmed cirrhosis from hep c. I went thru inteferon treatment twice and was a treatmenrt failure, even though I have genotype 3? My first tx. was for 6 months and 2nd for one year. My lft;s have been normal and until recently I've had little or no symptoms. Over the last month, I've notice my urine is dark more and more often. I've developed pain in my back under my ribs. Also, some flank pain and lower back pain. I am on pain management . I'm really scared as I've seen the end results of this disease. Also, am having some swelling in my ankles. I went for a sonogram yesterday for liver cancer and go for ct scan today. Will follow up with hepatologist after test results. I need to know I'm not alone as I hate to worry my husband further, I'm not ready to die and I'm scared I'm on my way out. I'm obsessed with my mortality.
Resolving HCV should still be a priority and hopefully that's the topic when you speak with the hepatologist. Other than 24 and 48 weeks length, you didn't say much about your treatments. For example, did you get to undetected and how long did it take? Were you compliant with the med schedule and avoid any breaks? Since you finished a year, you must have at least responded to the meds. Although the new meds might not be of significant value to you aggressive treatment (doses, frequency, resuce drugs) might be worth talking to the doc about. Geno 3 is not necessarily a friendly flavor.
First off... your husband is your mate. Of all of the people in the world, he should be the one you can talk to about your fears. I would think that he would be very concerned that you may not be around for the next 20 years. I think sometimes us females take a man's silence as not caring. They like to process their thoughts before they comment and sometimes that takes days. My husband was silent about my Hep C for a couple of weeks when I first got my dx. I later found out it was because it scared him, and he was afraid that it would make me more afraid to see his fear. When he understood that it helped me to know he cared to see his fear the conversation about my condition became much easier for both of us, and I didn't feel so alone any more.
As for this forum... outside of my marriage, this forum has become my family and goes through all of the ups and downs of tx with me. You get the understanding you need here... and the laughs.
Diane
As for this forum... outside of my marriage, this forum has become my family and goes through all of the ups and downs of tx with me. You get the understanding you need here... and the laughs.
Diane
Hector, my ct scan did show a kidney stone in my right kidney but it was not obstructing anythng. My dr told me my MELD was a 6 or 7, however my ct scan showed portal hypertension and probable gastroesophageal varices. My dr did not mention this. and did further lab. I go back to se him in 10 days. He has been consistent with endos and I had one only a few months ago. He said everything was looking good at that time. Is it possible for this to have developed so quickly? And do they just wait for you to start bleeding? Is there anything that can be done about portal hypertention? Geeze, I seem to feel like I'm one chronic panic attack!
Excellent info and advice posted above by Bill and Hector. I'm sorry to hear that treatment did not work for you and that you're suffering from pain, but I'd like to welcome you to the forum. I hope we can help alleviate your fears with some information, comfort, and support.
My husband was also diagnosed with cirrhosis in early 2007 -- indeed, you're not alone. It's no doubt a frightening diagnosis but having cirrhosis does NOT mean the end. There are a number of members here on this forum who have had cirrhosis for many years and are still managing quite well (and a few have had liver transplants and are doing well).
My hope is that your ultrasound and CT-Scans are clear, but even negative test results there would not mean you're ready to die. There have been remarkable advances in treating cirrhosis and even end-stage liver disease -- focus on learning about what it means to be Stage 4 and taking the appropriate steps to preserve your liver function is the best thing you can do -- being well-informed will go a long way to help you feel less scared, rather than obsessing on mortality. Even for those suffering from end-stage liver disease, transplantation is a real option these days -- don't ever lose hope or give up.
And I can understand you not wanting to worry or burden your husband, but with your current concerns, I truly feel you would benefit in having your husband share your fears and help you fight this disease. I hope you can let go enough to seek your husband's help and comfort and that he is supportive with what you are going through. Oftentimes it makes the weight much lighter when it's shared among loved ones.
Hope that helps. ~eureka
My husband was also diagnosed with cirrhosis in early 2007 -- indeed, you're not alone. It's no doubt a frightening diagnosis but having cirrhosis does NOT mean the end. There are a number of members here on this forum who have had cirrhosis for many years and are still managing quite well (and a few have had liver transplants and are doing well).
My hope is that your ultrasound and CT-Scans are clear, but even negative test results there would not mean you're ready to die. There have been remarkable advances in treating cirrhosis and even end-stage liver disease -- focus on learning about what it means to be Stage 4 and taking the appropriate steps to preserve your liver function is the best thing you can do -- being well-informed will go a long way to help you feel less scared, rather than obsessing on mortality. Even for those suffering from end-stage liver disease, transplantation is a real option these days -- don't ever lose hope or give up.
And I can understand you not wanting to worry or burden your husband, but with your current concerns, I truly feel you would benefit in having your husband share your fears and help you fight this disease. I hope you can let go enough to seek your husband's help and comfort and that he is supportive with what you are going through. Oftentimes it makes the weight much lighter when it's shared among loved ones.
Hope that helps. ~eureka
Hi!
"Over the last month, I've notice my urine is dark more and more often. I've developed pain in my back under my ribs. Also, some flank pain and lower back pain."
Does your doctor say this is related to your liver disease? The symptoms you describe also sound very similar to the passing of kidney stones. If you have kidney stones they should appear in your scans so you will know if that is the case. It is very rare to have pain from liver disease unless you have acute liver failure or HCC (liver cancer). The location of your pain is also located closer to your kidneys than liver.
As Bill said, you must reduced your salt/and sodium in take to reduce the fluid retention in your ankles, feet and legs. If that doesn't solve the issue you should get diuretics with will reduce the fluid. There are many meds that will manage your symptoms.
Assuming you were given proper treatment for your HCV and had a viral breakthrough and a relapse you should find out if your cirrhosis has progressed enough to get listed for a liver transplant. You are not going to die. I know it is upsetting and frightening. I have the same condition and was also diagnosed with cirrhosis in 2007. I know have decompensated cirrhosis with a MELD of 18 and am getting listed at 2 transplant centers. Unfortunately we are not alone. The transplant center at Yale where is was yesterday was packed with people. Educate yourself about cirrhosis, its complications and progress over time.
Let us know what the doc says and we can help to direct you to the right resources you will need to manage your disease.
Hectorsf
"Over the last month, I've notice my urine is dark more and more often. I've developed pain in my back under my ribs. Also, some flank pain and lower back pain."
Does your doctor say this is related to your liver disease? The symptoms you describe also sound very similar to the passing of kidney stones. If you have kidney stones they should appear in your scans so you will know if that is the case. It is very rare to have pain from liver disease unless you have acute liver failure or HCC (liver cancer). The location of your pain is also located closer to your kidneys than liver.
As Bill said, you must reduced your salt/and sodium in take to reduce the fluid retention in your ankles, feet and legs. If that doesn't solve the issue you should get diuretics with will reduce the fluid. There are many meds that will manage your symptoms.
Assuming you were given proper treatment for your HCV and had a viral breakthrough and a relapse you should find out if your cirrhosis has progressed enough to get listed for a liver transplant. You are not going to die. I know it is upsetting and frightening. I have the same condition and was also diagnosed with cirrhosis in 2007. I know have decompensated cirrhosis with a MELD of 18 and am getting listed at 2 transplant centers. Unfortunately we are not alone. The transplant center at Yale where is was yesterday was packed with people. Educate yourself about cirrhosis, its complications and progress over time.
Let us know what the doc says and we can help to direct you to the right resources you will need to manage your disease.
Hectorsf
Hi there, and welcome to the discussion group.
No, you’re not alone; you’ve got company here. I didn’t progress to cirrhosis, but others here have. I want to wish you good luck with the imaging results; I assume they will also order AFP blood tests (HCC cancer marker) in addition to the U/S scan?
Another thing that’s critical for management of cirrhosis is EGD, or endoscopy. If you haven’t had one yet, be sure to ask the hepatologist to work them into your routine maintenance schedule. This procedure looks for the presence of varices (enlarged veins) in the esophagus and will perform band ligation if required. It’s a relatively simple procedure, and can help avert serious complications.
]
I assume you’ve stopped drinking alcohol? The doctor will likely address the edema, or swelling of the ankles as well. This will likely consist of reduced sodium diet, and perhaps diuretics to wring fluid from your body.
Do you have periods of confusion or memory loss?
Ask your hepatologist to assign a MELD score; this is taken from routine labs, and can help assess mortality/morbidity associated with cirrhosis. It’s also used to determine urgency for transplant later on if required.
Good luck to you; let us know how the appointment goes; hopefully someone with more knowledge about cirrhosis will stop by and share their experiences with you shortly.
Take care—
--Bill
No, you’re not alone; you’ve got company here. I didn’t progress to cirrhosis, but others here have. I want to wish you good luck with the imaging results; I assume they will also order AFP blood tests (HCC cancer marker) in addition to the U/S scan?
Another thing that’s critical for management of cirrhosis is EGD, or endoscopy. If you haven’t had one yet, be sure to ask the hepatologist to work them into your routine maintenance schedule. This procedure looks for the presence of varices (enlarged veins) in the esophagus and will perform band ligation if required. It’s a relatively simple procedure, and can help avert serious complications.
]
I assume you’ve stopped drinking alcohol? The doctor will likely address the edema, or swelling of the ankles as well. This will likely consist of reduced sodium diet, and perhaps diuretics to wring fluid from your body.
Do you have periods of confusion or memory loss?
Ask your hepatologist to assign a MELD score; this is taken from routine labs, and can help assess mortality/morbidity associated with cirrhosis. It’s also used to determine urgency for transplant later on if required.
Good luck to you; let us know how the appointment goes; hopefully someone with more knowledge about cirrhosis will stop by and share their experiences with you shortly.
Take care—
--Bill
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