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My Dad and Hep C

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Posted 2/29/2012 4:34 PM (GMT 0)
Hello everyone,

I suppose I should start with a summary of our situation.

My dad is currently in the hospital trying to get his Ascites under control. They took 3.4L from him 2 days ago and are going to take some more today. The fluid is largely collecting "down stairs" - if you know what I mean. We're talking coconuts here. May make for a great party trick at a frat party, but that's about it.

Over the last few months we have dealt with high ammonia levels and the corresponding hepatic encephalopathy. Really not fun seeing my dad become unaware of even basic facts. That seems to be somewhat under control with the Lactulose.

Additionally his blood sugar levels are all over the place and he's suffering from an umbilical hernia that makes life hell for him.

I read quite a few of the posts here last night and it seems like this is all part of the process.

My questions are really for those who have gone through the process.

1. Where does my dad really seem like he is in the process? His most recent MELD was a 12, but it's been as high as 17. Maybe this is an impossible question to answer, but with this disease it's just terrible not knowing if you're a year away from a resolution or 2 months. Just some personal experiences would he helpful to maybe put a timeline on this thing.

2. Is anyone familiar with getting an out of state transplant? We live in WA state but my dad's care is done by the Mayo Clinic in Phoenix. How does this work? You get a call in the middle of the night and run to the airport? With only a finite amount of time to get down there, this seems tough. You go to the nearest ticket counter and tell them you need a private charter or something?

3. My dad is currently on SSD and is paying for his insurance through COBRA. Does anyone know of a solution once his COBRA benefits run their course? I think you can apply for Medicare once you are on SSD for 2 years, but he won't be able to stay on COBRA that long. Obviously, paying for individual insurance at that point would be beyond ridiculous in cost. I did stumble on a plan offered by the government, but it requires you to be without insurance for 6 months before you can enroll. Obviously, not an option.

Maybe with this question, I am just being delusional and there is just no way that this process drags on long enough for that to be a concern. If that's the case, please feel free to tell me so.

I am sure I will have many more questions, but I am just trying to get some answers to questions that doctors seem really hesitant to answer. I get that everyone is different, but there has to be some kind of a trend to leverage to really understand where we stand at this point. 

Thanks in advance for your help.

Tim

Posted 2/29/2012 5:32 PM (GMT 0)
Hi, Tim, and welcome to the forum. I'm sorry that your dad has liver disease. Can you tell us the cause of his disease? That will sometimes affect treatment and outcome.

You are right, the symptoms you mentioned are pretty much par for the course of liver disease. Since he's having encephalopathy, I'd say that his liver is decompensated.

You could speak to SS about your dad's eligibility for Medicaid. That is sometimes given in that 2-year wait for Medicare. Be sure to tell him that he has a TERMINAL illness.

It's also true that everyone is different, so it's impossible to say exactly where he is in his disease, etc. Usually transplant is done when a patient's MELD is in the 20s or 30s. MELD score can also change overnight, due to extenuating circumstances, such as liver cancer.

Since you're asking about getting from WA to AZ when he gets THE call for transplant, I assume he has been through the evaluation process. Yes, he and a caregiver would leave right away for AZ. I believe he would have 4-5 hours to get there before the liver would go to someone else. I had my transplant at Mayo FL. They called me at 3 AM and said if I wasn't there by 7, the liver would go to someone else. Since I live 12 min. away, I called a cab and was there in plenty of time. During the evaluation process, there were transplant candidates from CA and other parts of the country. Most of them simply got an apt. here for the duration, while others were staying in hotels. Maybe he could be flown to AZ by Angel Flight or another such organization. They do not charge for this service.

For additional info on liver disease, I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. You will read about what to expect with liver disease, not just viral hepatitis.

Hugs,
Connie
Posted 2/29/2012 6:34 PM (GMT 0)
Hi Hep,


The cause is Hepatitis C from living the fast life in the Army in the 70s. Now he's paying for those good times I suppose. I do have family in Phoenix that has basically begged him to move down there, but he really doesn't want to leave his home, girlfriend, sons, and grand-daughter. I agree with them though, at some point he needs to get down there. I think once he's at a 20 I will really try to talk some sense into him.



I did forget to mention that in addition to the Hep C and diabetes, he's also got a heart condition that requires a defribulator and in when they were giving him his ultrasound to drain him 2 days ago, they spotted a nodule on his lung. Obviously, the hospital sees that as "out of scope" for his visit (at least that's the impression that we are getting) and will probably leave that investigation up to Mayo to coordinate.



At this point, there haven't been any tumors so it's just a waiting game. A long, painful, waiting game. I know that any answers are not absolute, but there has to be some data out there that would indicate the likely progression rate from where we are at.

Post Edited By Moderator (hep93) : 2/29/2012 12:12:48 PM (GMT-7)

Posted 2/29/2012 7:20 PM (GMT 0)
I corrected your spelling of hepatitis in the above post, as the automatic censor had changed it to stars.

Has your dad had hep C treatment? There is a new one out that combines 3 drugs and is only taken for 24 weeks. It is showing great success in genotype 1a and 1b.

His heart problem might keep him from transplant. I'm not sure of their guidelines regarding heart disease. They will also want to find out what the nodule is. In addition, post transplant meds give one steroid induced diabetes, so if he already has it it might be more difficult to control after transplant. Then there's the healing issue connected to diabetes.

You can Google liver disease and longevity and come up with some studies and statistics. But truly everyone is different, so it's hard to predict outcomes.

Hugs,
Connie
Posted 2/29/2012 7:54 PM (GMT 0)
Hello Tim and welcome to HealingWell.  Connie has already given you some good advice.  I believe you can find out where on the list your dad actually is........like if he is 20th or 4th etc.......that can give you an idea of when your dad needs to be in Arizona. 

By googling you can find out almost anything concerning anything.  I googled something "like how long with liver disease" I came up with a site that I could put all my husband's symptoms in and it calculated his life expectancy........it was right on target for him.  So if we can not answer some of your questions ........keep googling. 

It's hard watching your parent so sick..........I really feel for you and your family.   Thoughts and prayers... 

Posted 2/29/2012 11:31 PM (GMT 0)
Has he been to the Veterans Administration hospital? The VA did my transplant. Low co pays or waived in some cases.

Best wishes to you and your dad
Posted 2/29/2012 11:45 PM (GMT 0)
Hi, TexasCowboy, and welcome to the forum. Thanks for your suggestion to Tim. How far out are you from transplant and how are you doing?

Hugs,
Connie
Posted 3/1/2012 12:22 AM (GMT 0)
Hi Connie. It's me Tom your friend from the Transplantcafe. For everybody else I'm 25 months out. HCC from HCV.
Posted 3/1/2012 1:12 AM (GMT 0)
Hi, Tom! Nice to see you here! There are not many post transplant members here, so we appreciate your input.

Hugs,
Connie
Posted 3/1/2012 2:09 AM (GMT 0)
Not Tom again! Cowboy up...

Good to see you here.
Posted 3/1/2012 3:32 AM (GMT 0)
Hi David. I heard you were here. Hope you are well.
Posted 3/1/2012 3:50 AM (GMT 0)

Texas Cowboy said...
Has he been to the Veterans Administration hospital? The VA did my transplant. Low co pays or waived in some cases.

Best wishes to you and your dad

Thanks TC.

He's gone to the VA but he felt like they wanted nothing to do with him. He claims that they told him that there was nothing that they could do.

I am not entirely sure that I believe that.

Tim
Posted 3/1/2012 4:34 AM (GMT 0)
Hi Tim

My partner is 10 months post tx at Jackson in Miami.

His MELD was 24 when he wwent for first appt in Miami.

They wanted to put him in hosp THAT day until they realized he was not 6 mo alcohol free.

During his new sobriety,his MELD went down to 17 for a long time.

When he popped a tumor it went to 22 and he got his liver pretty quickly. 3 months after listing. But he was really sick.

The idea to go down near hospital when it is closer is a great idea By that time he may need a caregiver as they get pretty sick!

Keep us posted.

Carol
Posted 3/1/2012 4:44 AM (GMT 0)
Hi Tim. I would look into that if I were you. He should have a primary care doctor that should refer him to the liver clinic and a hepatologist. One can get the feeling that the VA doesn't care, especially someone that has been on private insurance. There is a lot of red tape and hoops that you have to go through. They don't make it easy. In my case I resigned myself to being the poster boy for transplants. I did everything they asked. Never missed an appointment. There are at least 80 transplant guys at the Dallas VA. He needs to be registered and have a VA Card and assigned a primary care doctor. He does have some unlying problems. I was pretty healthy for a dying guy and there are lots of tests that must be passed. He might not be a candidate for transplant but at least he can get the care he needs once the cobra runs out. Ft Lewis is a big base in Seattle and has a top hospital. I was there in the 70's. Just remember at the VA the squeaky wheel gets the grease. Good luck.   
Posted 3/1/2012 5:17 AM (GMT 0)
Tim, does your dad have a drinking problem? If so, that may be the reason he said the VA couldn't do anything for him. If not, perhaps he was told he was not a transplant candidate because of his other health issues. Has he been through the evaluation for transplant?

Hugs,
Connie
Posted 3/1/2012 5:38 PM (GMT 0)
Thanks TC - I am sure if my dad wasn't a candidate for a transplant they would have already told him as much. He makes quarterly trips down to AZ to talk to the docs at Mayo and they have never told him that anything about him disqualifies himself for a transplant.

His heart issue is Long QT syndrome. It's not heart disease or anything, just a slightly irregular heartbeat (which may be a blessing in this process as it probably explains why my family has about a 65 yr life span).

Hep - No, my dad had his fun the 70s and 80s, but he's been a pretty clean living guy for most of his life since. I think the impression he got from the VA was that since he stuck the needle in his own arm in 70s, it was his own fault and thus not "service related". Therefore they would not help him. I think he may have just gotten an unhelpful person.

He's been evaluated and he's listed for a transplant. Our major concern is really about this process not dragging on beyond his insurable limits and having to unload his 401K just to get him care.

Aside from all that, he's doing ok in the hospital for now. They've tapped him twice for 6.4L and are going to monitor him today to see how his kidney's are holding up. If they are doing ok, they'll do a third tap on Friday and send him home on Saturday. I'd imagine he'll be back every couple of weeks after that for the procedure. The Mayo clinic ordered the tests to calculate his MELD, so we should get some kind of an update on that today. 

Posted 3/1/2012 6:39 PM (GMT 0)
Tim, thanks for the info. It does sound like your dad came upon an unhelpful and judgmental person at the VA. I've occasionally been in that position. I did the same thing as your dad, but in the late 60s. It's a shock when 30 yrs. later, after many years of being clean, you are diagnosed with hep C. Hard enough dealing with this disease...don't need to be judged.

The MELD is calculated using the levels of creatinine, INR, and bilirubin. If you have his lab reports or can get the latest numbers on these 3 tests, you can calculate the MELD yourself at:

http://www.mayoclinic.org/meld/mayomodel6.html

Hugs,
Connie
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