Hang in there! By all means, get a second opinion and learn as much as you can about your illness. It's daunting but so necessary to understand as much as possible what you are facing and to not give up hope. There are many on this forum who have faced such uncertainty and doing much better now
I agree with your decision to change doctors. Preferably you will be seeing a hepatologist in a transplant center. Ascites is a symptom of advanced liver disease (cirrhosis) as I am sure you already know. You need very careful monitoring. The leg cramps may be a result of dehydration as you mention limited fluid intake.
Hoping your symptoms improve and you get some relief soon. Stay positive - it is so important. I have no illusions of how hard this is for you. My husband has been dealing with all of this for three and a half years now. But the most important thing is that he continues to want to live and fights for every day no matter what he is going through.
Educate yourself as much as you can and please keep coming back to this forum. You will get a lot of support here.
Wow....you have described what I went through last fall almost to a word. There were days when I just wasn't sure if I was going to make it....
Obviously, treating the cause of the ascities is key and how blessed we are to be living at a time there is truly a cure for HCV so please do not give hope.
I can only share what was my experience...I do agree that getting in front of a Hepatologist that specializes in liver disease is key. I am being treated at a Transplant Center.
I had 2 paracentesis as well, fortunate neither showed infection. I started a low sodium, no alcohol and liver friendly diet.....fresh fresh fresh, with no fried or processed...and supplemented with Boost/Ensure because I ate such small amounts.
Fluid intake is tricky....I had to drink enough not to dehydrate but not too much to add to the ascities. I am 120 lbs now and I drink about 48oz/day. I drink a lot of tea..not caffeinated....ginger helped with the nausea.
I'm on diuretics. They started me low but 40mg Lastix and 100mg Aldactone has me stable. I will say I don't think the diuretics helped until after my 2nd paracentesis...probably did but it's my opinion that the fluid had to get to a lesser amount before it stabilized. If that makes sense...
I had Zofran that dissolved on my tongue for nausea. I would wake up in the am and gag until I couldn't hold myself up.
I took Advil almost every day....2 blue boys I called them...the gel, fast acting because each evening my fever spiked. I know we aren't supposed to take NSAIDs but did with doc approval because they didn't want my fever over 101.
The leg and finger cramping was/is so painful. I keep Tonic water...mix it with lemon juice for the taste and that gives me immediate relief. Heat also helps. I've started taking magnesium and I am having less occurrences.
I was told if the ascities continued to worsen then a shunt would be preformed....this is per medicinenet.com
What is TIPS?
Transjugular intrahepatic portosystemic shunt or (TIPS) is a shunt (tube) placed between the portal vein which carries blood from the intestines and intraabdominal organs to the liver and the hepatic vein which carries blood from the liver back to the vena cava and the heart.
For what is TIPS used?
It is used primarily (but not exclusively) in patients with cirrhosis in which the scar tissue within the liver causes partial blockage of flow of blood passing through the liver from the portal vein to the hepatic vein. The blockage increases the pressure in the portal vein, which is called portal hypertension. As a result of the increase in pressure, portal blood flows preferentially through the branches of the portal vein to veins coming from abdominal organs that normally drain into the portal vein. These organs connect with veins that do not empty into the portal vein and thus bypass the liver. Thus, much of the flow of blood bypasses the liver. If these veins going to the other organs enlarge, they are referred to as variceal veins or varices. Unfortunately, one of the places varices form is in the stomach and lower esophagus, and these varices have a tendency to bleed massively, frequently causing death from exsanguination. By providing an artificial path for blood traveling from the intestines, through, the liver, and back to the hear, the shunt placed during the TIPS procedure reduces the pressure in the portal vein, preventing varices from forming.
Hope some of this helps...if nothing else, sharing with someone who has been there, done that does. I still have ascities, moderate amt per my last ultrasound....plus I just started treatment with SovaldiOlysio and symptoms are definitely improving. So keep putting one foot in front of the other...there is light at the end of the tunnel.
Praying for you!
Welcome to the forum. I totally agree about finding another doctor ASAP and like was said by Nan you need a Hepatologist in a transplant center.
One of the first things that jump out to me with the leg cramps is having a potassium deficiency as this is somewhat common in cirrhotic patients. A simple blood test would answer that question... Wishing you the best.
I agree with all of the advice you've been given above. I would also suggest that you post on the Cirrhosis of the Liver forum, where you will find additional forum members who have advanced Cirrhosis, as you do.
"Onset of cirrhosis - what can I do?"
Ascites is usually the first sign of decompensated cirrhosis. Meaning your liver has become so damaged it is beginning to fail. This means that you may need a liver transplant at some point in the future. Therefore you must be get an appointment with a hepatologist at a liver transplant center. As the others have said you must see a liver specialist now. Only a liver transplant center can care for someone with advanced cirrhosis. No single doctor can care for someone who needs paracentesis to treat their ascites.
Anyone who develops ascites needs to be evaluated for liver transplant. If you qualify and have a high enough MELD score you will put on the waiting-list.
Only a hepatologist can determine if you are healthy enough because of your liver disease to treat your hepatitis C. Only after a full workup can they determine what is the safest hepatitis C treatment for you. Your cirrhosis must be monitored closely while you are on treatment to prevent a possible worsening of your condition. Luckily there are safer treatments now that people with advanced cirrhosis can treat with.
The symptoms you are experiencing are all common symptoms of advanced cirrhosis. Most of us liver transplant folks have experienced them at one time of another sometimes for years. There are many things you can do to manage these symptoms and of course your transplant center will help you with all of the complications of your cirrhosis.
Get a referral from your doctor to the nearest liver transplant center. Be proactive. Make it happen because your future health and life may depend on it. Liver disease only gets worse over time without medical intervention as you now know. Get the help you need now. There is no need to suffer more than necessary. Transplant centers and hepatologist are there to help people either treat or manage their liver disease and if need be, get a life-saving liver transplant.
Ascites, paracentesis, varices (endoscopy/colonoscopy), cramping, etc. are all complications of advanced liver disease not hepatitis C. In the future you should post your questions about your cirrhosis in the Cirrhosis community forum where issues of cirrhosis and its complications are discussed. For a person with advanced cirrhosis, hepatitis C is only a small portion of the issues we have to deal with on a daily basis. Even if you were to cure your hep C tomorrow you would still have cirrhosis. Learn how to live with your cirrhosis from others who are or have been in there.
You should also have your depression addressed. Depression is common in people with any life threatening illness but it can be treated and managed. Get help now. We all need all of our emotional strength to best deal with our medical challenges.
Take action to get the help you need. Advocate for yourself.
Best of luck to you.
Thank you so much for this. Hope to see you on Tuesday.
Thank you so much for this. Hope to see you on Tuesday.
Thanks so much for this information ! Do you know if I would still be considered eligible for the new treatments while I have a TIPS in me ?
I don't have any experience nor have I had conversation with my doc about treatment with TIPS. I will share the section from HCVguidelines.org....page 64 on their 'full report'....that was updated 3/21/2014...about recommendations for patients with cirrhosis...
Unique Patient Populations: Cirrhosis Box. Summary of Recommendations for Patients with Cirrhosis
Treatment-naive patients with compensated cirrhosis, including those with hepatocellular carcinoma, should receive the same treatment as recommended for patients without cirrhosis.
Rating: Class I, Level A
Patients with decompensated cirrhosis (moderate or severe hepatic impairment; CTP class B or C) should be referred to a medical practitioner with expertise in that condition (ideally in a liver transplant center).
Rating: Class I, Level C
The recommended regimen for patients with any HCV genotype who have decompensated cirrhosis (moderate or severe hepatic impairment; CTP class B or C) who may or may not be candidates for liver transplantation, including those with hepatocellular
carcinoma. This regimen should be used only by highly experienced HCV providers
Daily sofosbuvir (400 mg) plus weight-based RBV (with consideration of the patient's creatinine clearance and hemoglobin level) for up to 48 weeks
Hope this helps.....
Who is recommending TIPS? Only patients with refractory ascites are usually candidates for TIPS. TIPS is only used after all other first line treatments fail.
Like HectorSF said: in other words "putting the cart before the horse"
In patients with cirrhosis, less than 20% of patients with ascites will develop refractory ascites,
This is a technical online course for medical professionals. You can read it to maybe get a better general idea of the Diagnosis and Management of Ascites depending on your ability to understand some of the technical language. No Registration is required.
Module 3. Management of Cirrhosis-Related Complications
Lesson 1. Diagnosis and Management of Ascites
Diagnosis and Management of Ascites
Iris W. Liou, MD
Assistant Professor of Medicine
Division of Gastroenterology
University of Washington School of Medicine
Last Updated: August 29th, 2013
Evaluation of Ascites
Basic Management of Ascites
Hopefully you won't get to the point you need this one.
Management of Refractory Ascites
Introduction: In patients with cirrhosis, less than 20% of patients with ascites will develop refractory ascites, etc
or Complications Associated with Ascites
Best of luck to you.
Forgot the link
wow it's 3;30 AM and i should have went to bed hours ago.
Acities the buildup of fluid in the abdomin, thump yourself sounds like a ripe melon. I had mild acities before my transplant, but I had a big problem with varisies. I had 6 banding procedures and they are better. I am 58 and have had hep c for 30 years, do not know exacty when I got it. Sure is a sneaky slow killer. Post liver transplantation 18 months, a long road but I feel great. I`ll leave out the gorry details unless someone wants to know. I can only tell about my own expierence sense I`m not a medical person. keep the fighting spirit and never, never give in or up.
Thanks you. I am waiting for a call from my doctor in about 5 minutes. If there are any other questions you recommend I ask him, I will stay online the whole time.
I am not looking forward to this. I am going to send you the back and forth emails he has sent me over the past one or two weeks, . Plus his long explanatory voicemail in which he states he wants to do a TIPS.
do you mind if I sent it to your email address?
Towards the end of my tx I would get painful leg cramps and my fingers stiffening on my hands. Eating a few chunks of banana and oranges would fix the leg cramps within a day. The stiffening fingers were a little more stubborn but not painful.
You can get dried bananas if you are limiting your liquids.
Hope you get better soon !
Because of my cirrhosis I went through what I called the "Death Cramps" in my legs where I would beg God to make them stop.Always happened at night usually while laying on the couch watching TV.Also the hands would cramp and become mangled,just horrible.The tonic water works but it was too brutal for me.Get the magnesium and when the cramps hit me in bed I kept a banana on my night table and that was instant relief usually.I am 41 days into sovaldi-olysio and as a 59 year old geno 1a lifetime non responder I cleared on my 4 week bloodwork and with everything returning to normal(with the exception of platelets but they are rising slowly)I have not had any "Death Cramps" in a while.The liver is the quarterback,when its right everything else clicks.When its not right your whole offense suffers.
Good Luck Glen
Well, thank you for this huge wake-up call! I'm sorry for all you're going through, but thank you for sharing it. I read it before dinner a couple of hours ago, and I haven't been able to stop thinking about what you said with all the difficulties now with cirrhosis. I was infected in 1976, diagnosed in '92, went through three different treatment attempts and failed all three of them. I'm genotype 1b. The last treatment was Infergen and Ribavirin. I developed retinal hemorrhaging so I was taken off the treatment, and also am no longer eligible for any clinical trials. I see my doctor next month and will have an ultrasound and then walk over to the hospital for a consult. So 2005 was that last attempt. I've tried to keep the thought of cirrhosis out of my head, until it was confirmed at my appointment this past December. I also was diagnosed with an umbilical hernia.
I feel I have been more fatigued, but that could be just knowing it's progressing. So I don't need to keep dieting to get rid of this belly because it's HepC and not too much chocolate? I did lose about 20 pounds last fall and I definitely could wear my skinnier clothes. I don't know whether to just eat what I want and forget trying to lose weight, or continue basically a fasting low-calorie diet. I'm somewhere in the middle. I also don't know if I should not be doing sit-ups and other exercises with regard to the hernia.
What you said makes me feel so silly for my petty issues. My understanding is my liver is well-compensated and we don't want to jeopardize that for any reason. I have some surgery I'd like to have for a messed-up knee, for one. My doctor said it was okay as long as it's not abdominal surgery, but I've elected to not have any surgery. It would stress out my body too much.
This is so awful. Everyone on here is so helpful, compassionate and informative. I think I've been on this web site since 2003, maybe? A big hurrah to you and to all of you who just keep trudging along, showing us the way, and sharing failures as well as the wonderful successes, which is what I wish you! I'll post again after my doctor visit, but keep watching here for what I hope will be the end of this struggle for all of us.
Thank you Nan.. you are a blessing. your words very kind and empathetic.