I have been learning a lot from all the comments in this community that helps me very much to deal with my daughter’s disease treatment. Recently several questions are rising up my mind constantly. Since my daughter’s main symptoms are neurological and copper concentration on her liver biopsy was not very high even though cirrhosis was confirmed. Is there a possibility of liver failure that could request a liver transplant? Is there a possibility for liver regeneration to avoid this? WD evolution always ends with a liver failure as part of the disease affections? Our doctor just tell us that is too soon to predict that and that he doesn’t foresee the need of a transplant in many years, but the thing is that he doesn´t give us a possibility to avoid this. Is there any comment base in all of your experience dealing with WD that could give us a clue in this matter?
Thanks a lot
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Liver failure possibilities in WD patients
- By Atorres
- Posted June 1, 2009 at 6:30 pm · 9 replies
- In Treatment options
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- By Atorres
- Posted June 15, 2009 at 4:48 pm
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In low cooper diets are sodas permitted? You know drinks as Coke, etc. We understand that chocolate, certain meets and sea food, and certain vegetables are high in cooper, also water. We buy minerals free bottled water and we also use it to cook food. But I have doubts regarding sodas due to the fact that bubbles could be associated to mineral water, but really don’t know.
My son is not showing any WD symptom. His ceruloplasmin levels are ok. But base in your comments we should perform periodically tests on him? Should a DNA test on her sister and on him be the only way to verify if he is affected by the disease?
He is 13 year old and perfectly helthy so far.
- By sisandbros
- Posted June 15, 2009 at 3:44 pm
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Having lived with two bros. who succumbed to the disease, I would offer that if the disease process can be controlled by the medications and excellent followup and patient care by family and the patient him/self, her/self, then one could almost stave off the possibility of liver transplantation for many years. In my siblings history of the disease, I saw it take several forms of the process and one sibling succumbed to complications of the disease from an additional disease process in his lungs. Anyone having the diagnosis of WD, please, follow your MDs instructions and take your meds. I have just had ceruloplasmin levels drawn. I do not show signs of the disease and am in my late sixties. I have four grown sons.
- By nemo24
- Posted June 15, 2009 at 8:44 am
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I was diagnosed 4 years ago. I that time I had terrible trembling, slurred speech, with KF rings in the eyes, and could only walk with little steps. I was treated with spyrine (trientine) and zinc together and have improved greatly. The trembling has stopped, speech has become normal, and by walking everyday for about half and hour a day, my gait has normalized. Of course I'm still on these drugs and will always be taking my medicine. I watch my diet - that is to say, I'm on a low copper diet, although I may unintentionally consume some copper (like I'm not sure about our drinking water). I believe that you should do all you can and leave the rest to first God and then your trusted doctor.
- By Heron
- Posted June 4, 2009 at 7:18 pm
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It's so good that she was diagnosed in time!
I too have experienced liver regeneration, even at a much older age than your daughter.
Her neurological symptoms may improve more quickly once she switches to zinc. A lot of people have experienced that and hopefully she will too.
Best,
Ann
- By Atorres
- Posted June 3, 2009 at 11:29 am
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Right now my daughter is under Penicillamine and waiting doctor instructions to start Zinc (probably Galzin from USA in Mexico we don´t have any form of zinc as a medication). She hasn´t experienced any major symptom that could suggest a possible liver failure. We realized that she had her feet swollen, apparently because she was retaining water. Also her blood test results showed low platelets and the detection of an abnormal big size of her spleen and the visual review from the biopsy that shows damages in her liver (I have that taped) are the indicators of certain liver malfunction. In addition to this her main symptoms were; tremors in hands and head, slow talking, terrible hand writing, problems swallowing. She is experiencing a very slow improvement in the talking, hand writting and swallowing issues, tremors almost disappeared . We have been very fortunate because she was diagnosed 9 months ago when we started Penicillamine and apparently stopped major WD damages on time.
- By Marta1983
- Posted June 2, 2009 at 10:41 pm
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hello!!!
i can tell you from my personal experience that liver regeneration is possible. I was waiting for liver transplant, because I had liver cirrhosis which was caused by WD. My blood work was bad. the only medicine i was taking was a polish medication called Zincteral. after three years my blood work is excellent.
- By Atorres
- Posted June 2, 2009 at 8:38 pm
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Thanks a lot for your comments. We know that WD requires life treatment and care.Rright now we are focusing her treatment in extracting cooper out from her body and we are visiting Dr. Bronstein at UCLA to evaluate her progress on her neurological symptoms. The only think that I remember from her liver biopsy is that cooper levels were around 600 and something and the report concludes with; hepatic cirrhosis (doesn’t say how bad), significant increase of spleen size, minimum amount of ascites (the word in Spanish is “ascitis”) liquid found.
Kind regards
- By Heron
- Posted June 2, 2009 at 8:10 pm
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Many WD patients never need a transplant, even those like myself where their main symptoms were of liver disease. If your daughter takes her medication as prescribed, and avoids other things that can hurt the liver, such as alcohol or Hepatitis, she should be fine. Her doctor should monitor her liver to be sure that things are going OK. And it's good to get vaccinated against the various forms of viral Hepatitis.
- By momof5kids
- Posted June 2, 2009 at 7:57 pm
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What was her liver copper? How damaged is her liver? My daughter's Wilson's presented with acute fulminant liver failure and she needed an emergency liver transplant. But one of her brothers was now diagnosed with Wilson's and he had a liver copper of 257 but no real liver damage ...only early fatty changes. He has had some mild neurological and psychological symptoms. The liver doctor told us that with treatment they can keep his liver at this stage.
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