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

Ok Timeless Rick and Connie, The Dr. that my brother conferenced with yesterday was the radiologist, he was going to place the TIPS.  The GI/Liver Disease Dr was not present, it was my mom and dad and brother and Rad. Dr.  My dad is going to talk with the GI Dr. today about what he thinks my brother should do.  I keep trying to tell them they should conference with a Hepatologist.  I know the GI Dr. is very experienced, but he is also semi retired and does not do surgeries anymore.  We live up in the MT/ID area, there are no medical Universities up here.  I looked up on the Scientific Registry site and the closest facilities are Salt Lake and Seattle, and the statistics for Seattle are better but their waiting list is also longer.  We have to also make sure it is somewhere my brother can travel to. I was also told by a woman (over the phone) at the hospital where my brother was going to get the TIPS that Medicaid won't pay for procedures done in other states.  So, (I am going to be optimistic and say "when") my brother gets approved it sounds like we would still have to come up with the finances another way to help pay for a transplant, or get any kind of reimbursement on the TIPS.  I think we should find a Hepatologist and send the CT scan my brother had last week and get a second opinion on the TIPS.  The radiologist was concerned about him already being on the Lactulose and then having nothing more to help control the ammonia after the TIPS was placed.  But, I also remember the GP where my brother lives that does the Paracentesis telling my brother that his Ammonia levels were good.  I am thinking this radiologist does not have enough experience in ESLD.  I asked my mom to find out what % of functioning liver my brother has left, and am waiting to hear what the GI has suggested to my dad.  SS is going to call my brother to get the SSI appt for the application set up, and I am going to do a 3 way call and help him with it if need be.  By telling the woman at the SSI that he was a TERI case (terminal illness) they should be able to move the phone interview up 2 to 3 weeks.  All I know is right now we need to get my brother's Ascites stabalized somehow so he does not keep getting exceedingly filled with fluid to try and save money, I know it is not good for his vascular system or internal organs.  When they were at the conference yesterday, my mom said that when he was listening to what the radiologist was saying he quietly sighed and said, "Boy, I sure got myself into a mess this time".  I will be awaiting your stats and time frame Rick,  I

Sooooooooooooooooooo...........totally appreciate this.  Connie, thank you also for your service to all of us on this site, you are awesome.        Harp.

Thank you both so much for your quick responses.  Rick thank you for taking the time to go through your files.  I am going to call my mom and brother and pass this on.  Wow, you sure came down on your MELD, that is fantastic.  I am guessing eliminating the antagonist that caused the condition, nutrition, medications, and the TIPS has been your main factors.  This news is very encouraging.  We are NOT going to give up.  Like I told my family, this is not over until it is over.  And you are exactly right, we will return to our Creator when He calls us home, and it could be anytime for anyone, we are just called to keep moving forward with His strength helping us.  Have a happy time with your family.  Make some great memories.   Blessings to you all and keep you posted.     Harp.

Harp, I am very surprised that guided imagery was not used on your brother previously.  Without it they were "working blind."  When I had my drainage bag issues following hernia surgery (they kept clogging up), Mayo always placed them using ultrasound right there in the procedure room.  I could see on the screen where the fluid was and the radiologist working in there.  I never had to have albumin and my fluid was more of a localized thing, but still they used imagery.

I absolutely think your brother should make the trip.  It will be worthwhile to him.

Hugs,

Connie

Hello eveyone, I just got off the phone with SS, they still have not called my brother to set up an appt to file SSI application.  They said the local office is taking TERI cases in the order they came in, but he can do the phone application with ANY in-state SS office and they will forward info to his local office.  I am awaiting a call from a different town than his to see if we can get this done by the end of this week.  I am concerned about my brother because he is trying to hold out on the Paracentesis until Thursday, but he is extremely filled with fluid.  He is pretty much just laying down until then.  It has got to the point that his health has to come before trying to save on money, otherwise he won't have to be concerned about Liver Disease doing him in, it will be complications from the Ascites.  My mom says the Dr where they live may have been trying to save my brother money in how he was doing the Paracentesis, but she is going to ask him if he can start doing it with the Sonogram and Albumin drip, and if he can do it that way they (after the Thurs visit at the other hospital) will continue with his Dr where he lives until they figure out what to do about the TIPS.  -------(phone call coming in)----ok just got off the the phone with a SS office in another town east of my brother, this gentleman was so,so, very nice and very concerned about helping my brother, he is going to go around and see which of his agents might have an opening to help my brother get in this application.  Have to go, need to call and see if my mom is back from taking her car in to have clutch replaced.  My sister is driving up (2hrs) to pick up my brother Thurs and then will bring him back after Paracentesis.  Please keep him in prayer and that he will get in more often to do Paracentesis.   Blessings,   Harp. 

Thank you very much for your comments and caring.  Within 45 min of leaving my last post the gentleman from SS called my mom's home (thankfully she was back) and talked to my brother and did the application right then,  and two days later had the paperwork mailed to him for further information.  Today I drove across the border and met my sister and brother down at the hospital 2 hrs south of him.  The hospital had things all messed up and were just going to do a Paracentesis like he has been having done.  We were not happy! I called my dad, he called my brother's GI Dr. (who was on vacation across the US in New England) and within 5 minutes the GI Dr was on the phone with the nurses station and the radiologist explaining exactly what he wanted  done and make sure the Albumin was at hand if needed.  My brother had 16 litres drained, blood pressure remained constant and did not require the Albumin.  Although Rick, I am wondering did they give you Albumin because of any complications or was it for Therapeutic reasons?  My brother said the GP that has been doing his Paracentesis would only remove 5 - 10 litres at a time.  After today my dad is very upset about that because of all the fluid left in my brother and the pain and discomfort it has been causing him, not to mention he has been charging $700 each draining.  When my brother was done today and they brought him back he looked so much more relaxed, his breathing was not labored, his skin has more color to it, (a little jaundiced from all the Ascites, pressure) even his voice was stronger.  He told me not to hug him too hard because he had a marshmallow belly and I might squish him. Then he said, "I'm HUNGRY!".(And then the hospital never brought him his dinner) Ohhhhhhhhhh........it was so nice to see him not in pain.   When they were draining him he asked them what his BP was and they said it was good, and he said, "then why is the machine beeping like that", and the nurse looked and said, "oh, because the battery is going dead on it, we better plug it into an outlet".  My brother thought "great" nice to know your paying attention to my BP.  He said now he knows what to look out for now and how it should be done.  I believe the good Lord was watching over us today and took care of my brother.  I returned back home, and my sister and brother made it safely back home to my mom's.  While my brother was gone my mom went into his room and cleaned and aired it out for him.  I heard laughing in the backround when I called this evening to see how their drive back was.  What a nice sound it was.  I hope he has a peaceful and restful sleep tonight.  I think at least tonite we can all sigh a sigh of relief.    Connie, thankfully my brother has only 2 places to obtain medical records, and we are working on getting those, thanks for the info, and Rick, sorry you missed your fishing trip, but I am glad you had time to spend with your family.  Look at it this way, the fish will just be a little bigger the next time you make it fishing. Well, I think I am going to go rest my brain for awhile, it's been a long day.  Beautiful Fall drive though.  I'll keep you posted.   Abundant thanks and blessings right back to you guys (and gals).   Harp.

Wooo, Hoooo, my brother found out today that he was approved for Medicaid, (on the first application!)  Thaaank You Lord!!.  They will cover him starting 9/1/09.  He is going to start looking for a GI Doc up in his area also.  He said that this MD that has been doing the Paracentesis was actually only removing about 5 or so litres every 1 1/2 to 2 weeks.  So it was one step forward and two steps backward.  Probably why he ended up with the herniated belly button.  I hope it did not do too much damage internally with all that pressure.  He sure sounds alot better over the phone.  I was so happy when he told me that today.  And the other GI Doc that called the hospital last week to straighten things out; it helped that he is a friend of my dad's;  too bad though he is semi retired.  I wonder if the Medicaid will pay for Albumin replacement after Paracentesis?  We are also going to see about a second opinion from someone with more experience concerning the TIPS since the last radiologist only had put in two of them.  I told my dad they should call someone over in Seattle and send the CT scan over there.  I think also it might have something to do with his Bilirubin, INR, or Creatinine levels?  Not sure yet.  Rick, you are awesome, you took all that time to type out that information, thank you so much, I forwarded it to my brother, and he to my dad to talk to the GI doc about using it as replacement.  I reminded him of your address again, he said he does not type very good especially since he lost a tip of his finger on a circular saw helping build an addition on my dad's home.  You may still end up getting a "Hey" from him.  Well, have to take off to church, just wanted to let you know the good news.  Thank you again,  and thank you for the prayers,  will be praying for you too!  Harp.

Yes, Connie, I agree about Medicaid, I have a daughter in the same boat as your daughter, plus she did all her own work getting herself approved.  We are just happy at this point for my brother that they will cover the Paracentesis at the hospital and for his meds.  This will at least help him stay mobile, and decrease internal fluid pressure.  His diaphram is starting to relax and go back into place again.  I told him to go to Medicaid and get their list of qualifiying Dr.s.  If I recall some years ago in MT, there was a law passed that all Dr.s had to participate in Medicaid and were required to take a certain amount of patients each month.  I don't know if this is still the case, but I am pretty sure mostly all Hospitals participate.  So, I wonder if now that my brother is approved for Medicaid, if it will make it go any faster to get approved for SSI monthly cash assistance?  

I also just read through all my posts again to refresh my memory on everything, and Connie, my brother is staying ( I guess you could say) living at my mom's, but she does not support him financially, so you think maybe he should apply for food stamps also?  Which reminds me, Rick, do you work with a dietician?  My brother has an idea what to eat from different sites my sister and I have read up on, but is there actually an eating program specifically set up for individuals with liver disease?  Well, it is after 11 pm here, going to call it a night.  I am going to start a short thread and see if anyone on here knows of any Hepatologists is the Seattle or Salt Lake area.  Thank you again so much, alot of good things have happened in a fairly short amount of time.   All of your help has truly been appreciated.   Abundant prayers and blessings to you and your families.    Harp.  

Harp, glad you were able to go to a game.  Sounds like you were well prepped against flu germs!

Re: Your question about who to talk to regarding finances, etc., I would suggest the transplant center's social worker.  Not only can she/he give you info, but can make the necessary calls or referrals.  Be sure to ask if they have a charity program like Mayo does, that will pick up all or some of the bills.  For the 3 prior years, when I had cancer and follow-up afterwards, Mayo picked up whatever Medicare didn't pay.  However, this year I was denied.  And, as you know, I just had a major surgery on my rt. hip there.  So I'm getting bills.  I'm sending them $5 a mo., knowing they cannot refer me to a collection agency or do a thing, as long as I'm showing willingness to pay.  I have 5 appts. there next month, so I doubt I'll ever pay off my bill.  However, I do intend to apply again in Jan. for charity help.  I would not go to the Billing Dept.  They will want to set up a payment program and will require more than he can give.  Leave it to him to give what he can...hopefully, Medicaid will kick in very soon.

Thanks for the update!

Hugs,

Connie

Hello everyone,

Just adding an update concerning my brother.  He is now in the system for Medicaid and has his card.  Still waiting on hearing from SSI.  He went in for his draining 10/30/09.  They drained 11 litres, half of that was left over from the 2 weeks prior when they had to stop because he had been feeling some pain.  Two of my sisters and my mom were there.  They said he looked pretty good and looked like he had put some weight on in his face.  They still did not give him an Albumin drip, we are going to check into that, and if Medicaid will cover it.  His GI was there also and my brother went down his list of questions we prepared for him.  We are hearing you have to have the money first to be referred to a transplant center, but how about just a Hepatologist? (Which seem to congregate around a transplant center).  We are leaning toward University of Washington.  His GI said he is going to check into it.  I would think there should be no problem in at least getting a referral to see a liver specialist and then take it from there.  The Dr said he is doing good on his diet, biggest concern is sodium.  All his blood tests came out good, protein, sodium, though still a little off on the bilirubin.  No bacteral infections going on  in the abdomen.  He actually headed down (about 2 hours south of him) by himself in his truck for an eye appointment from a Dr on his Medicaid.  He's been gone since Wednesday.  I tried his cell (just checking up on him) to see how he is faring.  No answer hope he has it with him.  This is the first time he has been out on his own since August.  Wow, what a difference from three months ago, at least his quality of life has greatly improved.  He took some good nutritious food, meds, and an air purifier with him.  He is staying with a long time friend of his he has not seen in months.  It sounds like the fluid retention is accumulating relatively slow.  My mom said he is being very proactive in taking care of himself.  Well, I will update you again when I find out how his excursion went.  Thank you all for your prayers, they are greatly appreciated, and am praying for you and your families as well.  Abundant blessings to you all.    Harp. 

Harp, thanks for the update!  Am so glad to hear of your brother's improvement, and also that he has his Medicaid card.  Won't Medicaid pay for transplant?  Or is it Medicare that will pay for that?  I always get confused about that.  I do know that Medicaid covers more than Medicare does, though.   The trick is in finding physicians that will take it.  Very few will.

I hope that your brother's outing goes fine and that he will be able to resist any possible temptation.  I will keep him in my prayers.

Hugs,

Connie

Harp, thanks for the update.  I'd forgotten that your brother will have to go out of state for transplant.  I do know that Medicaid does not cover medical care out of state.

Tell your brother to keep up the good work with diet. 

I'm getting around pretty well now.  A little stiff and aching with cold weather.

Take care.

Hugs,

Connie

hello harp,

With so many of you helping your brother I found that if you start a 3 ring binder with a list of all meds and Dr's involved in his care, any discharge summaries from hospitals and always get a copy of lab work keep mosy current in front. You can also have a section for questions you want answers to. Keep a phot copy of insurance cards and copy of his medical proxy papers. This way no matter who is with him on any given day you have all information. My RED binder became famous at 2 hospitals and ER's, of course the transplant DR loved it because we had decided to save trips to transplant center we formed a circle of Dr's here to take care of labs and minor procedures. I ALWAYS showed up with my binder just in case something seemed to be miscommunicated or lost in fax land. I would look over labs and go to UNOS website and update meld scores. I could read a lab report as good as the nurses and sometimes better. I kept a list of side effects of every med and that saved Doug a few times. Doug had Medicaid too and they pd Taxi service to some of his appointments sometimes as far as a 2hr drive also included one rider. Later down the road they actually paid someone to come in and help me 25hrs a week to take care of him. There are alot of things out there to help.....you have to be vocal. I actually refused to take Doug home from hospital one time, insurance said he was capable to go home I said NO you need to find a way to get me help I need to work. 24hrs later I had Visiting nurses, PT and a home aide coming. We had a machine here that we could check BP O2 and weight this info was sent via phone line to a nurse to be evaluated. I also got the Med alert machine and was able to hire a girl to come in 25hrs a week based on my work schedule. All this cheaper than hospital stays......which Medicaid liked. Plus they didnt have to support me too.....lol..... so ask ask ask and sometimes demand! Oh and Doug had his TPS in place for 9yrs but sodium and diet are a good start.

Sue