Sorry to hear about your Dad. While there are folks here that have personally dealt with ESLD, you might get better response to your questions at Delphi's liver failure support group hosted by "imkindly". Here is the addy:
In the meantime, get him to a hepatologist, preferably one that works in conjunction with a university medical center. The ER is probably fine for middle of the night emergency stuff, but they won
We were told last year that a transplant would be the only thing to really help him now.... but because he's in his mid/late 50's the chances of him getting one is slim to none. I know he's got a liver specialist but I think they are thru the VA. He is only able to see him when its referred (insurance BS) I will check out that link tho! I appreciate you answering me tho :)
I agree, you need a more qualified doctor to help you. Is your dad still taking lactulose? If not, I would suggest he get back on it, you can buy it on-line. I don't think his age would stop him from getting a transplant. However, its first come first serve. He needs to be on a list.
First, let me offer you the comfort of what has to be the most empathetic Hep-C board I have ever found. They are keeping me alive. Does your dad have his jerks on his whole body or just below the shoulders? Is he taking any pain medication, by this I mean narcotics? There is a condition called myoclonus. I'm not a neurologist so I can not explain what the differences are between myclonus and epilepsy; although I think epilepsy involves some kind of lesion on the brain. Have you ever been dozing off to sleep suddenly to find yoursefl snapping awake? That's a myoclonic jerk. I have these little babies and it is suspected that they are caused by a spinal lesion, but they do not have to have a known pathology for diagnosis. Of the three drugs used to treat this condition are clonazapam, which is the best but has issues of addiction and two other drugs I don't think work as well. Again, I'm not a doc and don't work in the field either. I don't know much about the confusion and you should probably get that checked. I use the VA system iin Portland, OR and except for the normal and expected crowding at certain hubs, like the pharmacy. The VA is number one when it comes to dealing with hep. I hope writing to the forum has allowed you some peace and that you learned something. You are an angel taking care of your dad but don't forget to live your life too.
If your dad has access to VA treatment then that could be the ray os sunshine you currently need. Over the decades the VA has suffered at the hands of late-night comics and others looking for someone/thing to joke about. Currently, the VA system is one of the best in the country.Don't confuse the recent problems with Walter Reed Hospital in DC with the VA, Walter Reed is an army hospital. As an isolated population, veteran's are infected with HepC at much greater precentages than the pool they are taken from making the VA have to get it together treating these people. They are good!
I have issues with the VA honestly. I know they are supposed to be there to help, however, knowing my dad contracted hep c in vietnam they continued dosing him with meds that were highly toxic to his liver. They had him on several psych meds, and about 5 different pain meds, and all the pain meds had high concentration of tylenol in it. He was taken off all of those by his primary doctor here last year when all these problems really took hold. I disagree with his doctor as well, he has prescribed high doses of oxycotin for pain. He is still taking the lactulose, but for reasons unknown to all of us, he stopped for a week and a half. I figured his ammonia would be high but it was normal after only 2 doses. So now I'm at a loss for why. The twitching is mostly his lower arms, but every few minutes his whole body jumps. seems from the neck down tho. I've actually gotten alot more information than I was able to find thanks to this forum and one I was referred to! All the help and support I'm getting is very very helpful and honestly, bringin tears to my eyes! I need to get my mom in these forums... I think she can benefit from it as well! Thank you so much for all your help :)
Why on earth would he have insurance if he has VA benefits???? I THANK GOD I have the VA ......No way would I be able to afford this tx,its 36k just for Interferon/Riba for my tx for 48 wks,not including the 4k in Epoetin I was rescued with.....Aside from that stuff I hope you find out the reason for these symptoms..Which in fact coul be a number of things being that he was in Vietnam.....If he was in the 4th and 3rd corp area they used alot of defoliant IE Agent Orange...........And remember this is a science,their still trying to find out what works on Hepatitis.....I pray you get an answer for him.
A good overview of the diagnosis and treatment of cirrhosis is available here:
and part two here:
There is also great information available at Janis and Friends, a site dedicated to Hepatitis C patients and their caregivers: (Click on any topic in the blue box when the home page opens).
By all means, have your Mom stop in here and say hello. These sites will give her some folks to connect with, and might give her a feeling of empowerment as well. Do stay in touch, and let us know how things progress.
Best of luck to you and your family,
Try to encourage your Dad to consider transplant as an option. I know a few TP patients from a local support group here in town, and they all report excellent quality of life post-TP.
I believe the next step in this process will be a referral to a transplant center for evaluation. This is where my personal knowledge gets a little fuzzy; I
I just got back from visiting my parents... They neglected to tell me that two dr's have suggested a transplant. Both his primary and liver specialist. I think I may have talked him into it :| But he's still not all there mentally right now. I took all the information I've obtained the last two days and gave it to my mom. Now my research is two topics haha, what can cause these problems and the diagnostic tests needed, and transplant info. In regard to the question about his being in Vietnam, he was exposed to Agent Orange... I know all too well about that! I honestly haven't even thought to research that aspect. The VA hasn't really done well by my dad. He contracted hep C while in Vietnam (oral surgery gone bad, with contaminated blood transfusion) and just 12 years ago he was granted 100% service connected disability. His insurance covers my mom and most of his non VA meds. I honestly right now wish he were still in california. The VA system there is much much better. Here, he has to go to washington (which kills him to ride that far in a vehicle) and they treat him pretty poorly. My mom, if nothing else, will talk to his doctor tomorrow and discuss transplant options, as well as possible causes of his current symptoms. She has all the information I could find for her. And for that alone, I thank you all!! If not for that information my dad wouldn't have taken his antibiotics let alone his lactulose tonight! I plan to get my mom in here soon as she can get access to a computer regularly! Thanks again!
I would be happy to try and answer any questions you have. I can't guarantee that I'll be any help but I would be happy to try. Mike
Sorry I haven't updated in a few days... my dad was admitted monday into the hospital. He's finally home now, however, I have a new question for you guys. I've read so many places that lactulose is the treatment for encephalopathy. My dads ammonia was high friday in the doctors office. In the ER that night they said it was normal (they also said he tested positive for marijuana and he never smokes it) I think they may have mixed up his tests because they had 3 serious traumas in at the same time as his testing. Then his primary doctor wouldn't do another drug test, all he said "it will be there if we test him again". They said his ammonia levels were fine so they ended up taking the lactulose away completely and they are also taking all of his pain meds away. The man has the hep c from vietnam, he's got agent orange all over, and fibromyalgia. So my question is this, what type of OTC med can he take to at least ease his pain, and is it normal for a dr to take a person in this condition off lactulose??? Again, thanks for all your help!
where do you by it online? my husbands doing the same thing...