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My dad has hep C

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Posted 4/11/2010 1:39 PM (GMT 0)
I'm fairly new at this but I have been reading a lot on the boards lately and decided to post. My dad was diagnosed with hep C in Dec. of 2009 due to multiple blood transfusions in the 70's. He also has diabetes and is an alcoholic. Within the last month things have been going downhill, his liver enzymes are over 1200, blood sugar is over 600, and he had some lab work done last week that shows ammonia level of 420. The dr started him on lactulose last Wed so hoping this will bring his ammonia level down. I have read the hepatitis resources so I am somewhat familiar with the disease as of now but still seem to have a few questions. He seems to have good days and bad days right now which seems to be common with this disease. He does sleep a lot, is somewhat confused at times, swollen feet and ankles, and has started falling a lot. He has a dr appt. on Tues. of this coming week and they are going to do an ultrasound since his ammonia level has become so high so i'm hoping to find out more then as I will be making this visit with him. I spoke with his dr nurse on Thurs. to kinda see where we stand at this point and she basically told me that there is really nothing they can do if he continues to drink. So far he has not given up the alcohol and has no intentions to do so, although he has cut back due to the fact that he is sleeping a lot. I'm not sure at what stage we are with this since he does seem to have a few of the symptoms from each stage. I asked the nurse about a MELD score and she said he doesn't have one yet. My dad is only 62 so any advice or information would be greatly appreciated and I will continue to give updates. Sorry for such a long post.
Posted 4/11/2010 4:50 PM (GMT 0)

Sheduck, hello and welcome to the forum.  Your dad is making a very poor decision to continue drinking.  The nurse was absolutely right.  His liver enzymes and ammonia level are very high.  He is going to die a slow, awful death if he continues drinking and nothing that is done will help him.  In fact, the doctors will be less inclined to treat him knowing that it's a waste of time.   cry  What you have described is typical for end-stage liver disease, though it's impossible to say just how long he has left.  I don't know what they are looking for with the ultrasound---possibly liver cancer.

If you have read some of the posts here, you know that others are going through what you are, so you will find a lot of support here.

Hugs,

Connie

Posted 4/12/2010 1:30 AM (GMT 0)
Thanks, Connie for the reply. I'm sure liver cancer is what they will be looking for with the ultrasound. I know we are headed down a long road with this disease so i'm trying to get myself prepared for it. Thank goodness I have 3 sisters and myself who will be able to help my mom out.
I feel like my dad has already given up. I will post an update after we see the dr on Tues.

Thanks again,

Shelia
Posted 4/12/2010 4:12 AM (GMT 0)
Hello Sheila, and welcome.  Sorry that you have the need to be here but your in good company.  Our members here are the tops.   Just to be able to communicate with others who completely understand your fears and frustrations is a blessing. 

I agree with Connie it does sound like end stage.  I am sorry that he is continuing to drink.  It must be so hard on you and your family. 

Have them check him for an infection when he goes to the doctor on Tues.  That might be in the mix of things with ammonia levels so high. 

Hang in there.......take care.......thoughts and prayers.  

Posted 4/12/2010 11:25 AM (GMT 0)
Thanks, PG. I can see from reading the forums that there is a lot of caring and sharing here!! The frustrating part about this is the dr told my dad he could treat the hep C but would not even consider it until he had been alcohol free for 6 months! Had he chose to quit drinking we could be on our way to treatment as it has been 5 months since he was given the diagnoses. At this point he is only seeing a GI dr, should we ask to see a hepatologist or is there no need for it if he chooses to continue to drink?
My sisters and I are going today to try and explain the consequences if he continues to drink(although I'm sure he knows what they are), not sure it will do any good but it's worth a try!!
Hoping to get more answers after we see the dr on Tues.

Shelia
Posted 4/12/2010 1:12 PM (GMT 0)
i would say definitely try to see a hepatologist as they specialize in liver disease. he will only stop drinking if he wants to but if he doesnt then he is headed down a long and painful road that will not end well for him. i am so sorry you are having to go through this, it isnt any picnic and i suggest you get lots of rest and take time for you because you will need it. i definitely say research this disease and learn all you can. if he is filling up with fluid he will need lasix. they also may put him on spironaldactone and lactulose but first he needs a hepatologist. they could try interferon but he will need to get sober first i believe and even that takes its toll on a body but not guarenteed. my mom tried it and they had to take it off as it send her blood work spiraling and she could have died. he will need a advocate. i recommend getting a medical power of attorney so that you can make the medical decisions and someone should go to the dr with him as he will forget alot the doctor says. get his medical records and follow the bloodwork cause sometimes the doctors dont tell you everything and from the bloodwork you can see how he is progressing.
Posted 4/16/2010 10:07 AM (GMT 0)
Sorry it took so long to get back but all this has really taken a toll on me already and I know we have a long way to go!!
We saw the GI dr on Tuesday and had the ultrasound, US didnt show any abnormalties other than an enlarged liver which is not uncommon with this disease. I was not impressed with this dr as he couldnt answer any of the questions I had!! We did find out that my dad has hep c and cirrhosis which didnt surprise me since its not uncommon to have both. I did ask the dr what stage of the disease did he think we were at and he says stage A, although when I asked if it was common to see ammonia levels of 420 in stage A his reply was "no, we normally see these levels in stages B or C"!! I asked about seeing a hepatologist and he said sure I can refer you to one but I think its too early right now to see one! Can it really be too early to see a hepatologist? I would think not!! The nearest hepatologist we can see is 3 hrs away and my dad has refused to go this far and is even denying the fact that he now has cirrhosis too! I'm sure his reason for not wanting to see a hepatologist is he knows he will have to give up the alcohol and he hasnt made up his mind to do that yet! mad He is scheduled to have an EGD done next Thursday to check for varices. I really dont think he understands how serious this disease is as he has chosen to continue to drink! I'm really not sure what to do next, I feel like my hands are tied and despite the fact that my sisters and I have tried to explain all this to him it seems as tho he has his mind made up. I really dont know what else to do! cry

Thanks, worried for the reply. So far no fluid build up but im sure its just a matter of time before this starts happening!! I have done my research on this as I am a nurse but nurses have questions too tongue (my specialty is trauma)


frustrated and sad,

Shelia
Posted 4/16/2010 1:48 PM (GMT 0)
((((Sheila)))),   Lot's of us know the frustration of dealing with a loved one who will not stop drinking until it's too late.  I am one of them.   My husband stopped drinking on his own 2 years before he died but he was diagnosed 5 years before that. So for him it was a dime late and a dollar short. 

Just do what you can with him and for him.  But remember to take care of you self through this.  You have to make it though it in one piece too.   

Lot's of thoughts and prayers........

Posted 4/19/2010 9:38 AM (GMT 0)
Worriedgirl, my dad has refused to see a hepatologist, seems as tho his mind is made up at this time. I have tried to talk to him but he doesnt want any further treatment and doesnt want to give up the alcohol! I feel as tho my hands are tied but i'm trying to accept the fact that this is his decision and there is nothing we can do about it! cry




PG, thanks for the prayers as they are much needed!! I have been an emotional wreck the past few days but i'm sure it will get better with time. Right now its just hard to talk about it. My dad just sleeps a lot and is in a lot of pain.



thank you all for caring ,
Shelia
Posted 4/19/2010 2:00 PM (GMT 0)
You can't make someone do something, unless they choose to do it for themselves. **David**
Posted 4/26/2010 7:44 AM (GMT 0)
David, you are correct but it still makes it hard to accept although I'm learning to accept it better with each passing day!


We saw the dr on Thursday for the EGD and it showed some small varicies so they started my dad on a Beta-Blocker. He is starting to have a lot of pain in his back and abdomen so they are going to do more xrays this week if he chooses to go. He did have more lab work last week and we should know from that today. Hopefully his ammonia level will down since he has been taking the lactulose. He says he is tired of going to the dr so I'm expecting at any moment he will refuse to go back. As for now I'm just trying to be there for him and my mom and be accepting of any decisions he decides to make!!


Hanging in there,
Shelia
Posted 4/26/2010 9:11 PM (GMT 0)

Sheila, is he taking any pain meds yet?  If not, that would be one good reason to follow through with x-rays and scans and see the doctor.  There is no reason he should have to suffer.  Also, if the doctor has a better idea of how severe his disease is, hospice could possibly be called in for "comfort care," which includes pain meds.

Hugs,

Connie

Posted 4/27/2010 1:25 AM (GMT 0)
I agree whole heartedly with Connie... Mike had a lot of back pain... good thing they are doing more testing.. but with no possiblity of treatment... we didn't want any more news... but pain killers would help... ur doing the best u can... and ur honoring his choices.. even if u don't agree with him and u are treating him respectfully.. those are some pretty unique things... and wonderful.... keep ur chin up... take a deep breath... take a moment at a time... walk it slow... Sandi
Posted 4/27/2010 8:43 AM (GMT 0)
Connie, he's not taking any pain meds yet. I found out yesterday that his GI dr told him that he thinks the pain is coming from his kidneys and he needs to take that up with his family dr! (as I said b4 i'm not very impressed with his GI dr). I will be making all dr visits with him from this point on!! My mom says the only xrays they are doing are of his stomach, seems they found something wrong with the lining of his stomach when they did the EGD.


Thanks Sandi for the reply, you have been in my thoughts and prayers!! As of right now we are just taking it one day at a time. Mom said today that he hasnt eaten in 2 days and that he said right now he would have to get better to die. He also asked my mom if they were giving him medicine that would make him sick if he drinks alcohol so apparently even the alcohol is making him sick which would be a good thing right now if that means he won't drink anymore!!



Trying to keep it together,
Shelia
Posted 4/27/2010 10:43 PM (GMT 0)

Sheduck, liver disease affects the kidneys, and if they are giving him diuretics they are also hard on the kidneys.  He may be experiencing something called hepatorenal syndrome.  If he has stomach ulcers, that could definitely make him physically intolerant to alcohol.  Antabuse is a drug that is specifically given to alcoholics to try to keep them from drinking.  If they drink while on it, they throw up.  You need to find out what medications he is currently taking.

Hugs,

Connie

Posted 4/27/2010 10:46 PM (GMT 0)
if he has stomach ulcers that needs to be monitored because if it ruptures that could kill him, that is what happened to my mom. her ulcer ruptured and she had surgery but her body couldnt fight off the infection. if he starts vomiting and his stomach starts hurting him extremely bad get him to the hospital.
Posted 4/28/2010 5:36 AM (GMT 0)
Connie, the only medication he is taking right now is the lactulose, beta-blocker, and his insulin. He is not taking any lasix right now, not sure why he's not because his feet, ankles, and abdomen are huge.
They did call about his lab work today, ammonia level has only gone from 420-380 so they did increase the lactulose. I am working some long hrs right now but I do plan to call and talk to the dr tomorrow and see what I can find out. He does go for the xrays this week but doesnt have another drs appointment until the 25th of may. My mom is going to call tomorrow and see if we can at least get appt. with his gp to see what may be going on with his kidneys.

Shelia
Posted 4/28/2010 8:43 AM (GMT 0)
Hello Sheila and welcome to the forum, my heart goes out to you as you are in the same postion as myself. My mum will not give up drinking, l have tried to educate myself as much as possible but it still confuses me. There was a point when my mum could not keep any food down at all she would constantly bring it up as if her stomach was reacting badly. She has had so many things happen to her in reality she should not be here. I am trying to step back now, as no matter how hard I try, how many doctors I see and the advice I get she will die if she does not stop drinking, she is still very much in denial. So now I am trying to let her get on with it. Everyone is not the same, it has taken me years to realise this and come to terms with this. Hopefully your dad might realise in time for his and your sakes
Posted 4/28/2010 5:05 PM (GMT 0)

Being a diabetic can also cause kidney problems, so this is probably why he is not on diuretics--it would make an existing kidney problem even worse.  He would be better off on an opiate such as Percocet than an antiinflammatory, which is also bad for the kidneys.  I worked for a nephrologist (kidney specialist) who would have no problem writing Rxs for opiates but was very opposed to anti-inflammatories.  I don't know if paracentesis (draining of the abdominal fluid) would be possible in his case.

Hugs,

Connie

Posted 4/29/2010 3:48 AM (GMT 0)
Sheila I am so sorry about ur dad not wanting to help himself, sadly all you can do is be support for your mom as she is the one carrying the toughest burden. Dont let her isolate herself, as a caregiver I know that happens without you realizing it. There isnt much you can do for someone who has given up but much you can do for her.
Sue
Posted 5/7/2010 7:03 AM (GMT 0)
Just a quick update. My dad has been having some really bad days lately as he has put on 26 lbs of fluid, having trouble breathing now, and feet and ankles swelling so that he cant walk. They have finally started hi m on some diuretics (Spironolactone and Lasix) hopefully this will help in getting rid of the fluid. Still taking the Lactulose since his ammonia level is well above 200! His diabetes is finally under control as of now.
Keep us in your prayers as this is really taking a tole on my mom. I have been going down on my off days to give her a break and this seems to be helping her some. He was officially retired from his job as of 4/30/10 so we have him a big retirement party planned for the 22nd of May just keeping our fingers crossed that he will be able to attend (we have the big bosses from his job coming and he knows nothing about the party). My sister has put together an awesome slideshow for the retirement so im really hoping we can get him there. Even tho I dont agree with the decision he has made he's still my dad and we want to do what we can for him while we can cry .

Thanks for all the concern and prayers. This sight has really helped me a lot and I pray for all of you daily!!

Shelia
Posted 5/7/2010 12:05 PM (GMT 0)
Hello Sheila,  I am sorry that your father is having so many problems.......this disease can get really ugly. 

I think that a documentary should be made showing the life of a ESLD patient.  It should be a madatory viewing for all teens and  young adults who are risk of becoming  alcolholics or drug addicts.  Like the "Scared Straight"  prison life documentary.  If that didn't open up anyone eyes.......probably nothing would.

Is he displaying any signs of encephalopathy?  I was thinking that he may have an infection with his ammonia levels so high......but come to think of it.......my husband's ammonia would only be in the 70's and he could be goofy as a jaybird if he had an infection.  Other times it could be close to 200 and if he didn't have an infection he would seem to be okay.    Maybe it's the diabetes that is keeping your father's levels so high.  Since both involve the blood .....it may be the connection. 

Anyways,  remember.......give yourself so me time too.   Thoughts and prayers.........  

 

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