I'm new. My brother has been DX with Cirrhosis of the Liver: Part II

Glad to hear that the surgery was a success........take care...........

Hello,
I see time has gone by faster than I realized. My brother has been doing pretty good. Hernia surgery was successful. We just got back from Seattle yesterday. They said his TIPS looks very good, it is in place and the blood flow is very good. His mental clarity is pretty good also. He is down to two meds, Lactulose and Rifaxin. His MELD is holding at about 9-12 over the past 7 to 8 months and he has moved down on the liver transplant waiting list. Kind of bittersweet. He has gained weight though and they want to get that down. No ascites anymore, which means no paracentesis anymore, that was a blessing. He does have a second hernia in the groin area which bothers him when trying to excercise. He is able to get out in the summer and ride the ATV so I know he looks forward to spring and summer coming round. I think we all are. So as it stands right now life for him goes on as is until his liver says otherwise. We are just grateful we still have him, though I know it appears it can be exhausting for him to live day to day with this disease but I know also that he now turns to the Lord for his strength. That to me is the biggest blessing. I pray life is looking better for all of you as well. May our good Lord bless you, keep you, strengthen you, and encourage you in all that you do.

Harp !!! That is some good news . Been wondering how he was doing , Been so long since we last spoke . Sounds like he's in about the same position as me , Which is relatively good all things considered .
Your brother seemed to give me the impression he was gonna do just fine . You and your family pulled together and helped him get so far along in this process , A true rarity and a excellent example of what can happen if you have a great support group and a will to survive . My best of wishes to you all and be sure and tell him I said hey .


A. Ziffle ( Rick )

Thank you all for your kind words.
Rickster what have you been up to? Tell me how you are doing. What is your diet like? Are you still on any meds? Can you build muscle, and how are you maintaining weight? Where is your MELD at? Have you gone back to work? Let me know.
Blessings.

Hello to all!
My apologies I have not been more consistent with keeping up here. Been busy being a grammy of an energizer monkey : )
Rickster, everything you said in your last post is about the same as what is going on with my brother. He studied Network Marketing in College and has been working on a home business, but like you he cannot put it into practice due to losing his coverage. He has been working out on an Eliptical exerciser to help get his weight down as he was approved by the Dr.s at UWMC to do voluntary surgery on his hernia. This exercise equipment does not put too much strain on the herniated area. They approved surgery in September, but also told him his liver could fail during surgery and he needs to be in the best shape possible. So for the time being he has put off the surgery. His MELD stays around 10-12 and he is still on the Rifaxin and Lactulose and still has bouts of day, night switch on sleeping. Also, still experiences neuropathy in his feet. The Dr.s are still making him go through AA classes though he has asked for them to be discontinued, it has been almost 4 years now he has not had a drink and has no intentions of doing so. They said after the hernia surgery they will consider his request. All his tests appear to be maintaining and the TIPS is functioning well. I did not know that it only lasts about 4 years before complications can start up again. I will pass that along to him if he does not already know. My sister, brother and I go back to Seattle in March for his 6 month check up and we will see how he is doing on weight then and if surgery will be scheduled. After all he has been through I know he does not want it to be a hernia to do him in, though it definitely would improve his quality of life to have it repaired. Every little bit helps in the whole scheme of things. Well, I pray things are moving along in a positive direction for all of you, you have all been in my prayers, and I wish you all a blessed, prosperous, healing well, and peaceful 2013. Keep your eyes to the skies for our redemption draws nigh.
Phyllis

Helloooo Phyllis !! Such good news with the lil monkey and your brother , Hope the little one isn't wearing you out too much .

 According to my Hepatologist the four year complication is not a given but that the see a high percentage of patients in that time frame with clogging issues in the shunt . I'm still getting checked now every 6 months via sonogram and MRI for flow issues and cancer . A few nodules have been seen on my liver but nothing significant and the flow rate in the shunt is still " acceptable " . I questioned what acceptable was and was told it's flowing good enough not to worry . Can't say that was the answer I was looking for . A percentage may have been nice , But hey they just slapped my fanny and sent me home .   

 My meld at the last appointment was a 7 which is 1 point above a normal persons so that was great news . I'm going back on the 7th of this month for my next check up ( Day before my birthday ) , I have a friend and his wife ( She's got cancer ) that has got a appointment for earlier that day herself so we are gonna do a hospital road trip together .

 I can't believe there still making him do the AA thing still but hey , They are the bosses . You just kinda accept things like that and go on the best you can . My docs made me do therapy counseling ( Shrink ) so that they were sure something was getting through my skull , I had insurance at the time but it still cost me 80.00 a visit out of pocket . When I complained about it my doctor said " Well I guess we are through here , Pay your bill and good luck with that liver thing ." I muddled through the rest of my care since then without a peep of dissatisfaction being expressed to him . My doctor is a great guy now but he was a pain in the arse when I first saw him . He didn't expect me to live I have since found out , He's seen far to many drunks who cant handle the program and give up . He'd never say it but I believe it's a trial by fire if you know what I mean . How bad do you want to live ? How bad do you want something so many ahead of you ( more deserving folks ) want ?

Tell him I said hello and hang in there he's come along way . Being discouraged is just part of life . I sometimes have to remind myself of that . Being a alcoholic I been through so much of my life trying to cover my pain and feelings , It's hard to learn what comes so natural for others who didn't live the way I did . I believe personally that's what drives most of back to alcohol again . Inundated with common reality and feeling vulnerable without our shield of alcohol . He just needs to simmer down a bit and let things flow off his back , It's gonna be o.k .

 A . Ziffle  

My brother said they have a different kind of meeting through the hospital that he felt he learned more from. He tried to explain this to the Dr.s. He said the AA meeting he is in (small resort town on a reservation, I don't even think it is a "standard" AA meeting) is the same people telling the same stories and he can tell many times they come in with hang overs, and they don't seem to really care about getting any better. There are times when he is not feeling well or going through a bout of HE and they razz him saying he has been out drinking. He feels more depressed coming out of there than he did going in. He said at the hospital they teach and move forward and he likes to learn new things, that it is a more inspirational setting. I think he just wants to move on with his life and not feel like he is stuck in a rut. I believe he has to go in once a week. I am all in for getting him into the other program.
Connie and Rick it sounds as if the two of you are fairing well, this is good news. I remember at one of the pre liver transplant classes we were required to take, the gentleman speaking told us he waited 8 years before he got his liver transplant. We are just sticking together as a family and moving forward taking one day at a time. We will prayerfully and thoughtfully deal with each situation as it is presented before us. Once again, knowing that my brother turned to the Lord is the best and most important thing that has come out of this. Also, making friends and getting to know you on this site has been a blessing too. Wishing you all an awesome day!

Post Edited (harpazomeup) : 1/3/2013 1:39:39 PM (GMT-7)

Some hospitals and rehab facilities do have AA based meetings that are open to the public. I'm not aware of any here that are not based on AA. Your brother shouldn't go anywhere he feels uncomfortable or where folks aren't serious about staying sober (although there will always be some who aren't or will be in and out.) A little research should turn up something that will work for him.

When I first joined AA, it was a revelation to me that not everyone stayed sober. I didn't, either, but kept going back and finally got sick of picking up white chips and "surrendered." It was also surprising to me that sometimes those with long-term sobriety (20+ years) would have a "slip." These usually were the result of being complacent and taking their sobriety for granted.

I think your brother is motivated to stay sober and that's half the battle. I wish only the best for him.

Hugs,
Connie

Thanks so much for the support on the AA. I will pass it on to my brother, I am sure just knowing that others have gone through this will be encouragement for him to go through it until he can get into something else. Many blessings!
Harpazo me up.

Rick, if your still on here, how have you been faring with your TIPS and weight? What meds are you on now? Doing well with all I hope!
Take care,
Phyllis

Phyllis!!! Jeez lady where have you been. I thought the new baby got the best of you. I think of you all almost every time I log in. Been wondering how Bro's been coming along but now I see he's a little down. You know this disease has more twist and turns than a cork screw. I can't believe the TIPS has already started clogging this quickly, But you know they told me they see signs of clogging around the 4 year mark in most cases.

I was unaware that they could place another shunt in if the other goes bad. They told me they go in and clean the existing one when flow problems arise. I'm pulling hard to try and remember what they said exactly but I distinctly remember if cleaning didn't work the next option was transplant. They figure that going in and trying to do any extensive repairs would be too risky. If they do extensive surgery they wanted it to be a transplant, Makes sense to me. Don't know if you remember but the transplant team had a fit when they found out I had that umbilical hernia repaired. We waited four hours for a response from my doctors before the surgeon came in and said "Your intestine is about to rupture and we can't wait any longer". I was in so much pain I didn't care if the team approved or not and I signed the waiver.

The surgeon I later found out is the best in our area. When he closed me up he sutured the whole shut where the intestine came through but chose not to place the standard mesh screen over the opening. His fear was that the screen could potentially cause a infection, Our immunity levels are low with liver disease. Transplant team called 30 minutes into surgery but it was to late to stop then. I never asked what their decision would have been had they had the option to go ahead or not. He better watch that thing closely. If it turns bright red, gets hard to the touch and feels like someone is holding a match to it he better get to the E.R quickly. He needs to exercise but beware that a little bit of strain will cause him a world of hurt.

I'm guessing they are doing sonograms on him regularly so surely they would see fluid build up. I just had my MRI and sonogram last week and TIPS is flowing good. Fluid build up, bleeding and increased encephalopathy is a sure sign TIPS is going South. As far as what I eat are fairly normal meals just without salt (I use a substitute). I eat fish, Chicken and pork on occasions. Still like my peanut butter and jelly sandwiches. I have gained some weight myself but not enough the doctor can rough me up about. My daily meds are Xifaxin, Lexapro, Lactulose, Vitamin C, Multi-vitamin and B complex. I still have sleeping issue's so I have to take a occasional Ambien. No diuretics but can't stay on my feet for extended periods or else legs feel swollen.

I'm sure my docs would have preferred I went on to AA after the therapy documentation was done. I say if he likes it why not stay with the program. It wasn't for me. I tend to learn lessons very easily particularly where pain is involved. Drinking has passed through my mind a few times over the years but the fear of taking a sip and killing over dead or worse going through that hell again keeps me sober. When I get angry or frustrated I find something to occupy myself from those emotions.

Anyhow I'm so tickled you came back and gave us a update. I know you and your sis stay busy so I'm not gonna hold the lack of posting against you . Tell bro I said hey and hope he feels better soon. You know your always welcome here. If ever you need to bend a ear or ask a question I check on the forum regularly lately. Our friend and Moderator Connie (Hep93) is having a rough time lately so us village idiots (veterans) are giving her a hand around the forum.


Rick aka (Ziff)

And Connie, I will be praying for you!

I hope all is well. Please let us know how the surgery went. Are they intending to put mesh in behind the repair (or did they should I say). Tell him to hang in there.


Ziff