DEAR DR. ROACH: Our son passed away at 38 years old this past December with an end-stage alcohol-related liver disease. He had been sober for four years prior to this, but blood tests revealed that he had started drinking again. These same tests showed copper level readings in the 500s and liver deterioration in accordance with someone twice his age, which indicated the possibility of him having Wilson\u2019s disease (a rare genetic liver disease).<\/p>\n
He was in need of an immediate liver transplant, but this surgery wasn\u2019t possible due to multiple varices, a large mass in his stomach, a failing kidney, and the fact that he would possibly bleed out from a surgery.<\/p>\n
He had blood in his vomit and stools for at least two days (maybe more?) before going to the hospital. He hadn\u2019t been feeling well for at least three weeks before then. He required over 11 units of blood during the first three to four days in the hospital and occasionally some after the treatment of his varices.<\/p>\n
My question to you is, could his death have been prevented if he had gone to the hospital even a day earlier? — B.Y.<\/p>\n
ANSWER: I am very sorry for your son and for the fact that you have been dealing with potential guilt for so long. Wilson\u2019s disease is, as you say, a rare genetic disease with abnormal copper metabolism, leading to copper deposition in the liver, eyes and brain. People with Wilson\u2019s disease can have chronic liver disease or acute liver failure.<\/p>\n
From what you are telling me, I think your son had did have chronic liver disease. (Varices are dilated blood vessels in the lower esophagus, which form due to high pressure in the portal veins of the liver, but this takes months or years to develop.) But I think he died of acute-on-chronic liver failure. The kidney disease and bleeding issues suggest this diagnosis.<\/p>\n
A day or a week wouldn\u2019t have made a difference. Making the diagnosis of Wilson\u2019s disease years earlier so that he could have avoided high-copper foods and starting him on chelation treatment would have prevented this.<\/p>\n
Having him avoid alcohol meticulously would have been helpful. Heavy alcohol use or binge-drinking on top of Wilson\u2019s is very dangerous, and patients with Wilson\u2019s are advised to avoid alcohol entirely.<\/p>\n
During acute-on-chronic liver failure, a liver transplant can be lifesaving, but it does sound like it was too late, probably weeks too late (considering the wait for organ transplants) for your son.<\/p>\n
DEAR DR. ROACH: When I sit down on my recliner to take a break and read for a while, I will often doze off. But just when I\u2019m slipping into a nap, my body makes a little spasm or jerk, which causes me to bite my tongue and, of course, painfully wakes me up. This happens every time, so I never get a nap!<\/p>\n
Have you heard of this, does it indicate a problem other than the obvious, and is there anything that might be done for it? — S.T.M.<\/p>\n
ANSWER: Myoclonic jerks are common, especially when people are falling asleep. They do not normally indicate any particular nerve or muscle disorder, so it doesn\u2019t need treatment. It\u2019s a mystery to me why you notice them for naps but not at night during bedtime.<\/p>\n
A night guard to protect your teeth and tongue might help you. Ask your dentist about getting one. Periodic limb movement disorder is a possibility. If you are having lots of leg movements during sleep, this is the likely diagnosis, but it sounds to me like you are just having the common myoclonic jerks.<\/p>\n
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu<\/a> or send mail to 628 Virginia Dr., Orlando, FL 32803.<\/p>\n (c) 2022 North America Syndicate Inc.<\/p>\n All Rights Reserved<\/p>\n If you purchase a product or register for an account through a link on our site, we may receive compensation. By using this site, you consent to our User Agreement<\/a> and agree that your clicks, interactions, and personal information may be collected, recorded, and\/or stored by us and social media and other third-party partners in accordance with our Privacy Policy.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"DEAR DR. ROACH: Our son passed away at 38 years old this past December with an end-stage alcohol-related…\n","protected":false},"author":3,"featured_media":57224,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[210,41882,67,132,68],"class_list":{"0":"post-216183","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-health","9":"tag-rai-111110","10":"tag-united-states","11":"tag-unitedstates","12":"tag-us"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/115181464068825135","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/216183","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=216183"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/216183\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/57224"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=216183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=216183"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=216183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}