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Posted 12/5/2010 12:06 AM (GMT 0)
Hello Friends... I'm so happy I found this website. The forums and reference information has been so helpful in learning more and preparing myself for what's to come...

My father has Cirrhosis due to untreated Hep C. He was diagnosed in June 2010 with a MELD score of 12. After a TIPS procedure in August, his score is now 11. He's currently in the hospital due to an infection of the fluid in his abdominal cavity going untreated for a few days. He's getting a couple units of blood and they are treating the infection. Currently he is unresponsive to conversation but conscious and sleeping a lot.

In gathering "data" from friends/family that live near him, it seems his memory has been getting pretty bad over the past few weeks and is easily confused, agitated, and combative. I'm cautiously hopeful he will come back a bit after recovering from the infection... but am concerned that HE is progressing as he is exhibiting symptoms within Stage 2/3. Only time will tell at this point...

I was curious if anyone has any suggestions on useful websites and/or oganizations to help understand the home care options available with Medicare/Medical. There is so much information out there - maybe someone has found a one-stop-shop with great information.

On the venting front, I'm just SO ANGRY at his friend/family that see him on a daily basis just sat around for a week while he became sick from this infection and eventually shut down and wouldn't come out of his room for 3 days. These are the people that are supposed to report back to me so I can ensure he is listening to them and going to see the doctor at the ONSET of symptoms. They are so scared of ticking him off that they just decide to do nothing. It's time to bring in the second string of helpers who can stay emotionally UNattached when it comes to decision making.

Hopefully this is a pot hole on the road and not the beginning of the end. But I'm ready for what comes... I just hope he suffers as little as possible. =(

TheBBDiva xoxo

Post Edited By Moderator (hep93) : 12/4/2010 6:15:47 PM (GMT-7)

Posted 12/5/2010 1:23 AM (GMT 0)

Hello, BBdiva, and welcome.  I'm glad you found us.  I had to edit one word of your post as we try to keep this site PG-13.

You seem to have quite a bit of knowledge about liver disease.  That's a good thing.  How old is your dad?

I'm wondering about the fluid in your dad's abdomen that got infected.  Is he still getting ascites, even with the TIPS?  Is he on Lactulose for the HE?  Are they giving him Xifaxan along with Lactulose to prevent infection such as he has now?

As far as home care, I don't know of one specific site.  You need to call Medicare or Medicaid directly or go to their web sites.  I know that Medicare pays for a visiting nurse for a short period of time.  You need to get aides or home nursing prescribed by the doctor in order for these insurances to pay for it.  Others may have some suggestions.

Hugs,

Connie

Posted 12/5/2010 3:39 AM (GMT 0)
Hi BBdiva.

My hubby is in a similar state as your Dad....Hep C, Cirrhosis, and all the rest. MELD 23. He was in the hospital for the infection and fluid in October and has made good strides since. With the Lactulose he is making much more sense. Unfortunately the beligerant behavior is part of it. And very difficult for both the patient and loved ones. Some days I just cry. Then other days he is good, has amnesia about how horrible he has been and we more forward. We struggle about the car. He keeps wanting to drive, even though he can barely stand up sometimes! Today he got up at 7:30, back to bed at 9:30 and got up at 3PM It is 10PM and he is in bed for the night.

In October we didn't think he'd make it til Christmas. But here it is December and he is actually BETTER than he was in October.

The future doesn't look very bright. We talk about it when he is having a good day. And we are so proud. He is 68 days sober! For the first time in YEARS! Maybe if he can hold on 6 documented months he could qualify for a liver transplant. Not sure, but we can always hope.

Getting the help you need will be important. Good luck to you.

Lots of folks at this site are sharing the same difficult path. Come back often.
Mama Lama
Posted 12/5/2010 11:24 PM (GMT 0)
bbdiva, the services available also depend on what state you live in. Does he have state insurance along with medicare? No there isnt one stop shopping sorry to say.... it takes time and foot work. I did find alot here in MA but only with alot of bullying. I will try to help if I have more info. My e-mail address is in my profile.
Sue
Posted 12/7/2010 4:37 AM (GMT 0)
Thanks for all your replies.

My Dad was moved to Swedish Hospital in Seattle yesterday. He hasn't been coherent or verbal since Friday afternoon. They are treating the HE with Lact and Xif and expect/hope he will show improvement tomorrow. His MELD score went from 11 Nov 3 to 28 now. May go down when the infection is taken care of. Hopefully they will put him on the list. NOW!

His PCP told me I need to come to grips that if he doesn't get a transplant SOON he won't make it. Ill be discussing the treatment plans with the transplant team tomorrow.

He is unresponsive and is moaning a lot. I'm sure the pooping will be fun for him tonight. His eyes are very yellow and bulging out. He looks horrible.

Do people really get to this point - and farther - and fully recover?

Hope so...

Diva
Posted 12/7/2010 6:45 AM (GMT 0)
BBdiva, it does happen occasionally, but I have to tell you that things really don't sound good at the moment.  It sounds like he really does need a transplant to have any chance.  And he may have to wait until one becomes available and may not withstand the wait.

Was there some reason he didn't begin treatment when he was diagnosed with hep C in June?

Hugs,

Connie

Posted 12/7/2010 7:43 AM (GMT 0)
My Dad was incarated for 6 years when he found out about the Hep C. They didn't put him on a treatment plan. After he was released they discovered the Cirossis and it was too late to start the treatment. Very unfortunate as he got the raw end of the justice system deal. Now he is going through this!

They fluid again today and found out its still infected. He went for a CT scan tonight to see what is causing the infection. He also had some tests done on his heart and lungs as part of the transplant eval. Fingers crossed he gets on the list. He is O-, so it could be a while before a compatible liver becomes available.

Its good to hear others have bounced back. Although I'm trying to stay positive, but I know the severity of the situation. I just don't want him to suffer.

I'm really happy with the care he is receiving. I just hope its not too late.

Getting some sleep to deal with whatever comes tomorrow.

Hugs...
Posted 12/7/2010 6:18 PM (GMT 0)
Well... He's still in the same condition today. They are focusing on finding the source of the infection and the Lactalose is at work.

Unfortunately they saw some pressure in his pulminary artery (or something) and will not approve him for transplant at this time. More tests on the heart will be done, but can't be done now because the impact of the dye on the kidneys.

They anticipate he will improve over the next 48 hours and believe his liver has a bit more life in it as his meld score was so low 3 weeks ago (11).

At this point, I'm considering a DNR. If he can't get a new liver, and his body shuts down... Then why make him suffer more. If he is awake/alert/ and has some quality of life, that's a different story.

Does any one have any experience with making a decision on DNR status?

Thanks...
Posted 12/7/2010 7:00 PM (GMT 0)

BB, sorry to hear there's been no improvement yet.  I have cirrhosis and am waiting for the new treatment to become available next year.  However, I could've taken the present treatment (commonly known as "the combo.")  Your dad's cirrhosis could be worse than mine, though.  My MELD has never been more than an 8, though I did have liver cancer.

Do you have Power of Attorney or a Medical Directive to make that call on a DNR?  There are a couple of members who have made that decision on behalf of their loved ones and I hope they will post.  Coma often preceeds death in liver disease, so that would be something to watch for, as well as severe pain not relieved by pain meds.  It often comes down to quality of life versus quantity.

Hugs,

Connie


Posted 12/8/2010 4:18 PM (GMT 0)
BB, Yes Doug and I had a medical proxy done early and also a DNR in place under certain conditions. Sadly this had to be utilized in the end but I knew what he wanted done and when enough was enough. His team of Drs gave me all the information I needed to make the choice that was needed. It wasnt easy but it wasnt as hard as I thought because we had talked about it in depth.

Sue

Posted 12/8/2010 4:50 PM (GMT 0)
Thanks for sharing your story. I appreciate it.

Dad is coming ouyt of the confusion a bit. Hopefully he'll continue to come out of the fog. Waiting around to talk to the transplant team this morning. Praying his Kidneys are improving so they can run more tests on the heart.

My BFF flew up to hang with us at the hospital. Its definitely nice to have the support. And she seems to understand his moaning better than I do, so he's probably happy about that! :)

Happy Wednesday...

Diva
Posted 12/9/2010 12:37 AM (GMT 0)
Diva... sorry I wasn't on earlier .... Mike and I had set up a medical directive... and I was his POA.... he had a DNR in place... and it was very difficult... Mike approved initial treatment then became unresponsive... and when the dr was going to do more treatment than allowed in the medical directive... I had to give the go ahead to pull the tubes and remove the life supports... it was the hardest decision I ever made... but was Mike's wish...and even today... 7 months later... I question it... and will forever... however without a doubt his wishes were followed... Sandi
Posted 12/9/2010 1:38 AM (GMT 0)
Sandi-what is a POA?
Posted 12/9/2010 1:47 AM (GMT 0)
Power of Attorney........
Posted 12/9/2010 2:27 AM (GMT 0)
Power of Attorney... an excellent safeguard for significant others... or family members.. helps with finances when the person can no longer handle them... and legal decisions... laws vary state to state... just a good addition to the medical directive...with a power of attorney that has been witnessed and notarized the person can also become the rep payee for social security... these are all steps that I took with Mike in the last year...Sandi.. hope that helped
Posted 12/11/2010 8:50 PM (GMT 0)
Thought I would post an update on my Dad. He is still in ICU with a breathing tube. The bleeding in his nose seems to have stopped. Lots of blood and platelets the last few days. His acites has increased, so I think they will drain him today to relieve the pressure on his lungs with the hope of extubation tomorrow.

Even with the sedatives off, he is pretty un-responsive to conversation and isn't able to open his eyes yet. Once the breathing tube is out and the propofol is stopped, I'm hoping he'll wake up and become more alert. Until then, just reading to him and touching him a lot so he knows he's not alone.

It's hard to know whether he will get back to us or not at this point. All vitals are stable, but they have been all along.

Still hopefully they will approve him for the transplant list after this... Wait and see wait and see day by day. Next week I'm hoping we will know how much he will improve and hear what the doctor's longer term prognosis is. stay in hospital? 24x7 home or facility care? hospice? No idea at this time... Scary.

Posted 12/11/2010 9:08 PM (GMT 0)

Diva, thanks for the update.  Well, no wonder he's unresponsive if he's on Propofol!  Hopefully, he will become more alert when they D/C that.  It has often been said that patients who are comatose or unresponsive can still hear.  So continue talking and reading to him.  Here's hoping for improvements soon!

Hugs,

Connie

Posted 12/13/2010 10:30 PM (GMT 0)
Hello Again!

Connie - question for you... are you referring to the new treatment for Cirrhosis or Hep C? I found the triple threat treatment that will be available next hear for HCV... His liver is too far gone to treat the Hep C at this time.

Still at the hospital in ICU. He has stayed stable and his numbers are all improving. His MELD has gone from 28 to 19 since being here; likely due to getting the infected fluid in the abdomen under control. His Kidneys are recovering a bit which will hopefully allow for further testing on his heart to see if he can get on the list.

I'm a little irritated with the transplant team for their continued "your dad is very sick"... well no kidding, docs. If he wasn't "very sick" we wouldn't be in your care would we. This afternoon I'm going to talk to the Nurse Coordinator and find out how sick he is in comparison to others they are treating. Very sick means absolutely nothing to me, doesn't allow me to come to any conclusions, or help with any decisions. The next time one of them says that to me, I'm going to have to address the way they are communicating with me.

Anyway... he is being tapped now which will hopefully make him more comfortable and allow him to get off the breathing tube and sedation. The good news is that he is much more responsive then he was last week, despite the propofol. His eyes are no longer yellow and muddy... they are clear and he can focus on me when I'm talking to him. That's the type of baby steps we like to see.

I'm most scared of what they will tell me when all these issues are addressed. Will he get out of the hospital? Will he need full time home care? Facility care? Will they tell me Hospice? It's driving me crazy!

Praying for patience, wisdom, strength, and healing...

Diva
Posted 12/13/2010 11:41 PM (GMT 0)
Diva, they really can't tell you anything specific right now.  Since his numbers are coming down and he's looking better, that shows improvement.

The treatment I was referring to is for hep C...wherein they add a third drug, a protease inhibitor.  It probably won't be available until summer.  Meanwhile, if your dad gets a transplant, he would probably still need hep C treatment at some piont, as a transplant doesn't remove the hep C...it's in the blood stream and will likely come back.

There is no med or treatment for cirrhosis beyond not drinking, avoiding red meat, and eating a lot of fresh or frozen fruits and veggies.  And lots of water, if he's not on fluid restriction.

Please continue to keep us updated.

Hugs,

Connie

Posted 12/14/2010 6:19 PM (GMT 0)
They are finally extuabting Dad today. He is very agitated and is very ready to get this thing out. Despite the propofol, he is very alert.

Unfortunately, the culture from the TAP yesterday showed there is still something causing an infection in the fluid in the abdomen. They don't know where it's coming from. So a cat scan will be done today to try to find it and new antibiotics started.

Dad is pretty down, I can just tell. The nurse just wanted to listen to his heart and he shook his head and waved his hand indicating "no more". Just breaks my heart.

Looking forward to extubation and stopping the sedation. He will be more comfortable and hopefully become more alert. It's lonely in here - hope he is able to talk a little bit soon.

Hugs
Posted 12/14/2010 7:32 PM (GMT 0)
Diva, I think he will feel better when they extubate him.  His throat will probably be sore for a few days.  Hopefully, he will be able to breathe well enough on his own.  I hope they find the source of the infection soon.

Hang in there, and also tell dad to hang in there, too...things will get better.  A positive attitude goes a long way.

Hugs,

Connie

Posted 12/14/2010 7:41 PM (GMT 0)
Well I'm just tickled right now! Tube is out! Breathing good and caughing.

AND... He asked for a drink of water! The first querstion in almost 2 weeks!

We'll tackle this darn infection!

Positive Connie thought channeling!!! :)
Posted 12/14/2010 9:06 PM (GMT 0)

GREAT news, Diva!!

Hugs,

Connie

Posted 12/16/2010 4:03 AM (GMT 0)
Hello!

Well, Dad ate as much as possibly could today after he got the okay. He is very alert and was awake all day. Color is good and he is starting to remember a little bit about what happened the couple days before I took him to the hospital.

The cat scan on the abdomen was yesterday. When I asked the docs today about the results, I got a "we need to discuss and come to an agreement"... Not what I wanted to hear. But hopefully they will enlighten us tomorrow. No matter what the cause is, knowledge is power.

My Dad today asked if tomorrow we could fill out the 5 Wishes (Living Will/Advanced Directives) document. We've talked through this document before, but never completed it. I was glad he brought it up; selfishly, then I didn't have to.

Current issues to attack are the infection and the TIPS not working... Then on to more tests of the heart to see if he can get on the "list".

I was hoping for some feedback from members/caregivers/patients on how to communicate the severity of the mental impact of ESLD. I think he realizes that he was a bit confused before going to the hospital, but I don't think he really understand that this is going to get worse before it gets better. The fact that he may not be able to live completely independently is also going to be a very hard thing for him to hear and deal with. He lives alone and likes his privacy, so this is a very big concern of mine. I know he will get more depressed the longer he is in the hospital and as his independence decreases... Any advice on how to lovingly communicate the progression of mental degration and necessity of assistance?

I know the 5 wishes discussion will be a good segway to bring up home care and hospice, but I am just freaking out about how to gently bring this up. =(

So good news today as to his status... but new challenges for tomorrow.

As always, thank you so much for all your responses! You are angels in my life right now.

Hugs...
Posted 12/16/2010 5:01 AM (GMT 0)
Diva-it comes through very clearly how much you care for you father. Good news that he is eating and awake and alert.

Emma
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