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A family member has been diagnosed with idiopathic end stage liver disease. He has had ascites, esophageal varices, pleural effusion andsome mental changes. Has anyone had transplant?
@twocatmama, Welcome to Connect. I am a transplant recipient. 10 years ago I received both a liver and a kidney trnsplant due to PSC (Primary Sclerosing Cholangitis) I had 3 of the symptoms that your loved one is experiencing. It doesn't seem to matter what name is given for the liver disease, or whether it has no known cause (idiopathic liver disease) like your loved one, the symptoms are commom for all of us.
Is your loved one receiving care for his liver disease? Is he being consideded for a liver transplant? What are some questions that you would like to ask?
He is still being managed with diruetics, a thoracic catheter which we drain daily up to 1000 ml. He just feels terrible. He’s lost nearly 70 pounds and has neuropathy which causes him to walk very slowly with a cane. The condition hit him like a cyclone last October with no warning. He is being followed by a transplant hospital. Initially he was told he was good for 5 years, but they might be rethinking that now. Doctor said if the current treatment doesn’t work, they would consider a shunt before the transplant list. I think my question has to do with life after transplant,
@twocatmama, Unfortunately, no one can predict how long it will be until our liver fails to where we need a transplant. And no one has any promise of the outcome if /when we get one. I will share a little of my story
When my symptoms hit, they also hit with a vengence. I had no other health conditions, but my liver disease took both my liver and my kidney. I was placed on dialysis and had other interventions along the way. It was a difficult period of time for me and for my husband, my caregiver. My transplant team was exceptional in their knowledge and care that they provided. My family and friends gave me the strength to keep on going when I felt like I couldn't go anymore. One of my best decisions ever was when I said that I wanted to be evaluated for a transplant. Because of my transplant, I am healthy and active once again.
You are not alone in your search for answers and support. I want to invite some others who have experienced the liver transplant process as a recipient or as a spouse of a recipient. I post the question that you asked, "How is your life after your transplant?"
@jodee, @gaylea1, @rrichardparker, @parmcat, @des46893, @mickj, @frankw54, @gary1864, @rodney9999 , @contandwell
Hi, @twocatmama and I also welcome you to Connect. I am a liver transplant recipient, my transplant occurred in September 2016. I presume if the diagnosis is idiopathetic, he does not have cirrhosis? I had non-alcoholic cirrhosis (also called NASH cirrhosis). It seemed to come on suddenly, having "mental changes" — hepatic encephalopathy — was what brought it to the forefront. Prior to that I did have other symptoms but they were not diagnosed as cirrhosis symptoms. These were declining platelet counts (which was considered to be ITP – "idiopathic thrombocytopenic purpura"), fatigue, shaky hands (which was diagnosed as "essential tremor"), excruciating cramps in my thighs — these were infrequent, thankfully, but when I had them they were horrible, and fluid retention in my feet at times. That seemed to happen primarily when I traveled. All of these should have added up when I had my first episode of hepatic encephalopathy, HE, but unfortunately it took a long time before a doctor did finally put them all together. After my diagnosis I went to a hepatologist and she told me that I probably had cirrhosis for 10 years, it takes a long time to present itself.
Are the mental changes this person is experiencing causing them to be irrational and possibly combative? Mine did, and I ended up in the hospital a few times with them prior to finally having a diagnosis. It seems as if the symptoms a person has can vary from one individual to the next. If you have any questions, please feel free to ask. Those of us who have been there are happy to be able to help anyone who is experiencing these problems or to help the person who is a caretaker or closely associated with the person.
After transplant all of the symptoms disappeared. Life is good and I am grateful every day for how well I feel now.
Please let us know how this person is doing.
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I waited 17 months on the wait list and 2 year from diagnosis until I received my liver. The symptoms prior to surgery were quite intense and I couldn't wait to be transplanted. While I was nervous about the transplant surgery I came to terms with it knowing it was my only hope. I was extremely calm when my call came as I was more than ready. The surgery itself was 8.5 hours but I came out of it feeling great. The actual recovery from that surgery was quick and relatively painless. My staples were removed 4 weeks after surgery. I had complications post surgery and it was a difficult time as I underwent 4 ERCPs and one major surgery. These have been resolved. I am now 7 months post transplant and beginning to feel lile my old self. My transplant team and family kept me going through the entire process.
My life is so much better now as the 2 prior years were awful. If you have questions or concerns this group is always here to share their experiences and supply tips on the whole process. I wish the best for all those waiting for a transplant.
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