Toxic Hepatitis? Becoming desperate for answers

Brian

I think you said in an earlier post that a liver biopsy had been done. May be worth seeing if the first hospital will send the slides for the second hospital to review. This is much better than just the report. A different pair of eyes may spot something in the slides.

I too underwent a personality change on steroids. It is very trying for everyone concerned. You hear yourself saying things you don't mean or being overly combative but you can't stop yourself. Please remember that any harsh words she uses she won't mean but understand her frustration at her apparent lack of control.

Do keep us posted and I really hope they pin the cause down very soon.

An

Hi Brian,

I agree with Ann.  I had some negative behavioral changes on pred.  I apologized to my daughter regularly.  I'd say "sorry for blowing up and over reacting...I'm pretty sure it's the meds ".  High bilirubin can cause encephalopathy as well.  You said they checked for PBC but they will check again?  The treatment for PBC is Ursodiol.  It's a natural bile acid and helps thin bile.  It helped decrease my bilirubin when it increased as a possible side effect to my azathioprine.  I have remained on it as it doesn't cause any trouble.  Perhaps that's something you can ask the doctors about and maybe they will at least try it for your wife.

A.Ziffle,

Actually, the visa came yesterday. We have been working on it since Sept, and went to finalize it at the immigration office on Wednesday. My current orders bring me back to the US in March.

They have only a few military internal medicine specialists here in country. I have spoken with two of them, who have reviewed her records. They cannot find anything abnormal, and they say all of the testing they would have suggested has already been done.

DG & Ann,

I have noticed a little bit of a personality change in her; slightly irritable, very fatigued and somewhat "out of it" more than anything. The steroids messed her up pretty good. She is normally one of the most calm natured people I know.


UPDATE:

Today I went to the hospital to gather all of the co-pay billing paperwork I have acquired over the last 2 months so I can file my claim with our secondary insurance provider. I was able to sit down with my wife, an interpreter, and the hospital's liver surgeon, who reviewed her case. I asked about the PBC, gall bladder, bile ducts, ect. and tried to verify that they had tested everything else relating to her condition, although there was somewhat of a language barrier. From what it sounded like, they claim that they ruled out just about everything imaginable.

The doctor did go over her MELD number, which was 27. He stated that she currently has a 1/3 chance of recovering without a transplant. He recommended that she does not stay in Korea, because donor livers here are extremely hard to get. He said she needs to get to the US ASAP, get in a big hospital, and get on the x-plant list there, just in case, and attempt to recover there in the meantime. He wrote a letter fully describing his findings and recommendations, and that letter will go up my chain of command on Monday, so it is highly likely that we will get an early transfer, based on her current medical condition.

My concern now is finding a good hospital in or near Colorado. I am sure they will cover everything over again and hopefully find (if) anything that wasn't discovered here in Korea. If anyone has any suggestions of such a place, I would greatly appreciate it. When I get to the US, my health insurance coverage will also upgrade, as well as become her primary provider (no more lousy Korean Insurance and 2nd-tier care).

Not the best news, but on the other hand I feel much more hopeful that she will get the treatment she needs soon. This has been a rough month. I am so grateful to have my daughter; she's kept me sane through most of it.

Thanks so much for everyone's ideas and input so far. This forum is one of the few resources I have here as far as people to talk to (in English) about this stuff who understand the subject matter.

Brian

Post Edited By Moderator (hep93) : 1/11/2013 11:03:24 AM (GMT-7)

 Brian , That does sound like some encouraging news . Hopefully someone will chime in about hospitals in Colorado soon . I believe Harpazomeup ( A member ) lives in that area , I'll try to get up with her about it .

 A. Ziffle

Brian

Good to hear something is happening. I am sure you are both feeling the strain of all this worry. Sorry I can't help on hospitals (wrong country!) but there is a wealth of knowledge on this forum and I'm sure you will get lots of great information. You may want to do a search on 'Colorado transplant' on this forum and see if you find any previous posts recommending somewhere. Just a thought.

Ann

Thank you, Carol. I will look into that tomorrow. The Doc here briefly explained (in broken English) the MELD scale and how they use the numbers; I had no idea that different US states actually go by the MELD numbers for transplant priorities, nor did I even know what the MELD was until today. I guess I have a bit of research to do.

On the same token, its a tradeoff between having faith that things will get better per odds given and at the same time preparing for the worst case scenario. Its hard to realistically gauge anything based on my wife's say, because she is the most optimistic person in the world and had they told her she had a 1/200 chance of surviving, it would have made no difference.

I was told by some of my senior ranks that if need be, they will get involved and support justifying any location we need to be stationed at next in the US that will be in proximity of a facility that can provide the treatment that my wife needs. I am a bit limited in locations with my career field, but I will look into possibilities. So far to my knowledge, that includes Kentucky, Georgia, Texas, North Carolina, Kansas, Colorado, and possibly Washington DC., Louisiana, or California.

Brian , We have Duke and UNC Chapel Hill here in NC. All of which are based around the Raleigh NC. area , I myself am being seen by UNC liver transplant program . Dr. Paul Hayashi is over that department and a very highly recommended doctor in Hepatology . I live about a hour below Fort Bragg in Fayetteville NC. a major military base , That place is massive and expanding daily . Just above NC in VA there is the naval base in Norfolk so most any type of armed services that you may serve in is right here .

Those people at UNC saved my life so of course I'm a little biased . Should you need some help with phone numbers just ask and I will send you the info . I got some time and don't mind doing the leg work if it'll help ya and the wife .

 A. Ziffle 

If you looked at it state by state, or even comparing a few different states...in terms of people waiting, you will see that there are far more in CA than FL. Some of that probably does reflect the size of a state's population. What I did was to start with Mayo FL, then looked at the liver transplant waiting list, and the number with the same blood type as I and in the same age bracket. That narrowed it down quite a bit. Since UNOS updates the list once a week, you will see changes from week to week.

Hugs,
Connie

The transplant team in Omaha at University of Nebraska Medical Center Transplant center is great. I don't think the wait time is too long, however it is 700 miles from Denver Colorado. However, I do think there is a military base in Omaha NE
Best to you and your wife. Hope this is all sorted out soon for you.
Angie1953

Ksport,

Louisiana might be a good option; Ft. Polk is one of our duty stations.

Carol,

I will look at the database some more and check based on her age and blood type. I should be able to narrow things down. I think my employer will be expecting me to make a determination pretty quickly so they can get the ball rolling.

We will be on Tricare Prime once we get back to the US; as far as I know our options are excellent as far as treatment facilities they will cover & surely not limited to military facilities.

Wife is having a rough time coming off the steroids. She's been running a 101 fever the last couple days, but swelling is finally starting to go away a little. She is still very positive and optimistic about everything.

Brian

Brian, has your wife been on a tapering dose of Prednisone? It should be decreased very slowly by reducing the dosage gradually.

Hugs,
Connie

Brian

That's about right. Though there are some subjective factors as well that I do not fully understand. Weight for example. They wouldnt put a teen liver in a 200 lb man. There are other factors in the immune system. I think they are called aleils. I need to look that up.

In an identical twin the match is so good anti-rejection meds might not be needed

The closer match the better it is.

They may also look at that fine line between who is sickest AND whi is most likely to survive. They want positive outcomes..

Where are you with narrowing down a state and medical center?

Be sure to let them know you are coming

Best

Carol

Connie,

She took a low oral dose for about a week and then they upped the dose to an injectable for about another week or two and then took her off of them. I really dont know much more details other than that, other than she swelled up everywhere, gained 25 lbs, her face broke out really bad, and she became very fatigued.

Carol,

I spoke with my career manager at work today and unfortunately, due to the competitive nature of my career, I was told by the that it would be highly likely that I would lose my job in another 2 years if I do not go to Colorado.

The waiting list in Colorado is one of the higher ones, but I was also wondering what the possibility is of getting her set up in a hospital in Utah or another state with lower numbers. I am not sure whether or not that is possible; nor do I totally understand the legalities and stipulations of the donor recipient registration process. Colorado would be by far the best for me in regards to childcare assistance and career, so that is the direction I am going to start looking for now.

The military doctors here are trying to research and get some more opinions on all of this in the meantime, so I am also waiting to hear what they have to say.