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DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/10/2005 9:54 PM (GMT -7)   

We have a new member who posted tonight. I'm moving her message to this thread, so everyone can offer their support.

Here is gaylesw's message:

 

It is so good to see there is a place to ask these kinds of questions.  I have a friend for whom I am trying to advocate.  He has hep c - advanced stages.  He broke a hip 18 months ago (before I knew him) was placed in a nursing home and subsequently on hospice.  They would not fix his hip due to his liver disease. He was down on his luck at the time..no insurance, had lost touch with his brothers, etc...so he fell through the cracks.  I helped him relocate his family. His brother is in Florida (we're in Kansas) and wants to be his power of atty.  This friend is now on disability and Medicaid. about the same time, I started wondering about liver transplants and researched a lot of info on the net and also called the KU transplant center in Kansas City, KS.  I discovered that he could very well at least be evaluated for the transplant list and that KS medicaid pays for the entire procedure! The problem in that the hospice is not too pleased with all of this.  Many of the nurses I have talked to did not even know that someone with Hep c was eligible for a transplant! It is so frustrating - many times I feel like giving up.  But I just can't. There are circumstances that make be believe there is hope. Is there?


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/10/2005 10:03 PM (GMT -7)   

Welcome, gaylesw!

What a great friend you are!

You are not the first person to be told that HepC is not transplantable. The truth is, it's one of the primary reasons for transplant in the United States. The other is non-metastasized liver cancer.

I would do everything I can to see that your friend gets evaluated. He will probably have to get off hospice care. We were told that Mark wouldn't even be considered, if he were on hospice.

Waste no time pushing his doctors to get the evaluation started. KU has a good reputation in the transplant 'world' and you should be able to find a specialist at the transplant center to help you with all of this.  If he's got financial coverage, they should not balk at evaluating him.

Is he drinking? doing any kind of drugs? That will stop the whole process.

God bless you and let us know how it's going.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

gaylesw
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/11/2005 3:21 PM (GMT -7)   

dj

Thanks for replying.  Currently, he is not drinking (18 months sobriety) but has had a problem in the past.  The hospice has him on a pain med - Diluedin (sp?) for his hip - would that disqualify him?  The KU med center transplant coordinator told me that he must have 6 months of counseling, but they could evaluate him during that time.  I have a counselor ready to start, but he must sign off hospice first. (I think he is scared and it is difficult to get him to understand what's going on) We are also looking for another doctor to follow him and give a referral, but it is hard to find someone who takes medicaid.  His current doctor is also one of the medical directors for the hospice, so...it seems very political to me.  I don't know what his meld score would be, but he has recently started to have ascites and has had encephalopathy off and on for several months. What do you think his chances of being accepted are?

Thanks again for any advice! And hope your situation works out - that must be very frustrating.  How often does Hep c reinfect after a transplant?


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/11/2005 6:03 PM (GMT -7)   

You've gotten a lot done! Take a minute and relax. . . . . Okay, back at it! tongue

The dilaudin shouldn't make any difference, as it is prescription. Basically, they look at alcohol and street drugs; any lifestyle that would be detrimental to his future health.  Eighteen months' sobriety is pretty darn good. The VA program here, which is where we got started, required minimum 1 year sobriety and alcohol/substance abuse counseling. So it sounds pretty much the same.

I presume you've been to the KU Liver Transplant site, but I'll post it anyway. There's a link Find A Physician where you can look up a doctor and request a callback.  You might see if there's a GI or Internal Medicine physician that would help. You could even try the transplant surgeons; there are two. http://www.kumed.com/bodyside.cfm?id=1288

There is nothing wrong with hospice, in fact it's an amazing help in certain circumstances. Right now, your friend needs aggressive management of his condition; not comfort care. Hospice isn't trained to treat his condition and shouldn't be reluctant to do what's in his best interest.  When our situation changed and we were getting ready to have Mark evaluated by a transplant center here in Arizona, the hospice staff went out of their way to help us get him officially removed from their service.

I would also suggest, if your friend has ascites and encephalopathy, that you ask the transplant coordinator about getting him admitted and doing some of the evaluation inpatient.  It would probably be a very good idea for him to get on medications to help with the water and ammonia.  Not to mention, if the evaluation tests can be done inpatient, your friend wouldn't have to wait for an outpatient appointment, which could take weeks.

No one can tell you, except the transplant evaluation team, whether your friend can be listed. But it sounds like you are giving him a really good chance at it.

Sorry for the long post and I hope I've answered some of your questions.

Please let us know how things are going. We're here for both of you.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

gaylesw
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/11/2005 8:05 PM (GMT -7)   
Thanks so much for your help and information. I know hospice can be a good thing, but they are dragging their feet in response to his brother who is trying to get power of atty. I am familiar with this hospice and they actually called and "nicely" chastised me the same day his brother called them asking for the paperwork to get done. His brother has contacted an attorney, but I don't know if that will help. I feel rather helpless - not being a relative. If I were, you can be sure, I would immediately pack him up and get him the treatment he needs.
He likes me and says he would do anything for me, so maybe I should really push him to sign off hospice...? Then we could get some of these other things into place. Thanks also for the website, yes I have read some things on there, but didn't realize you could ask for a physician!

This is a great forum - I am glad I found it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/11/2005 8:27 PM (GMT -7)   

I'm glad you did, too.  yeah

Keep us posted and be sure to let us know if there is anything we can do.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
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