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Posted 9/29/2010 3:39 AM (GMT 0)
Thanks for the thread. I've been on the site for a month or so and have found lots of great information about this disease. My wife, 40, has been dealing with chronic pancreatitis since she was 20 years old. It's caused her a great deal of pain through the years but in recent years, she was not hospitalized - it was more of a pain management issue. The last year or so I started to notice some changes - mostly mental state, memory loss mainly. And then about 2 months ago it started to get worse. I didn't know what it was but I was frustrated.

One morning, she couldn't get out of bed, couldn't speak and couldn't stand. I called 911 and we took her to the hospital. Turned out her ammonia was 170. The did a biopsy and diagnosed her with NASH although that diagnosis seems unsatisfactory to me. She was actually listed on Monday with a MELD of 23 but is now sleeping a lot more - close to 16 hours a day.

Its been hard (we have a 7 year old as well) but I think it will only get harder. She's having some issues with her bladder so I do a lot of cleaning. Days are long - they start early and end late. I found Lotsa Helping Hands to be a great resource. I have set up a couple appt's daily and neighbors and friends sign up to come by and check in on her. There isn't much they can do besides make sure she gets her lactulose and just make sure she is ok.

I just try and take it a day at a time....get my rest and make sure I have a personal activity/exercise for myself every couple days....

Thanks everyone for sharing your knowledge and experience....it has really helped me.
Posted 9/29/2010 4:17 AM (GMT 0)
NASHhubby, welcome to the forum. I'm wondering if the volunteers who come in might be able to wash dishes, do a load of laundry...anything to help you. Also, how about Depends or Serenity pads for your wife?

Hope we see more of you here. If you have a medical issue you wish to discuss, you can start a new thread for it and give it a topic.

Hugs,
Connie
Posted 10/1/2010 3:20 AM (GMT 0)
Mer, Doug loved being naked!!! Before I finally got him to sleep in boxers I went in to check on him and the little #&^* was in a comatose state so while I was waiting for the Fire Dept (they are so cute in their gear) and EMTs I dressed him. What a chore that was. I just felt weird about sending him to ER naked! One night he went to lay down, I think it was Feb. and he laid on top of the covers cause he was hot and I always kept a window open. Well he went to the ER that night for hypothermia his core temp was so low they couldnt even get blood. It took 24hrs to raise his temp. You should have seen the looks I got, he literally almost froze to death in his own home..... we chuckled about it later and he would tell the story with what I call a Doug twist. It was all my fault and my real name was nanook of the north!!! I could tell many stories about our adventures. Yet that man could be so confused he didnt know where he was and he could still sing a song or tell you who directed a movie who starred in it and when it came out! I think I know all Jimmy Buffet songs and not from the CDs either lol. So as tough as it got we still chuckled and laughed at all the things that would go wrong.
Sue
Posted 10/1/2010 3:15 PM (GMT 0)
well Mike is surely running naked in Heaven singing Jimmy Buffet songs too...certainly hope he didn't sneak my bra and undies up there with him... thanks for the laugh... Sandi
Posted 10/2/2010 6:14 PM (GMT 0)
Got times mixed up idea   but currently in Liver Disease Chat if anyone wants to come in...hope everyone is doing ok.
Posted 10/2/2010 8:15 PM (GMT 0)
this is my first time to post. hubby's been diagnosed with hep c since they had that diagnosis...he has had it since his late teens. he is 60 and has cirr also. this past month he was given diclofenac for arthritis pain. he had a huge bleeding episode and has been downhill since. he came off the diclofenac of course, i can't imagine why the ortho gave it to him in the first place...but there is no need to talk about that now. what is done is done. he has the mental confusion. retaining water. high ammonia levels. very low platelet count.

we are trying to get him an appointment with a hepatologist at a major medical center in florida where they do transplants, but there is a 3+ month wait to see anyone. we can't believe it.

his gi doc gave him lactulose to start and now we are stuck at home while that takes it toll on him! he is sleeping so much and when he is awake he is in a horrible horrible mood. he is as awful to me as he was on treatment in 2003!!!! and he was horrible much of the time then. no matter how hard i try to be sensive to his changing needs and moods, it is wrong. and i am a little frustrated because he wouldn't stop drinking along the downward path. i begged him and watching him make this worse and worse and worse and now it is now and he is shouting at me. i am a wreck. is meld score is 18. is that bad?

i won't drive with him as he seems to out of it much of the time. and he feels trapped, less of a man, etc. when i drive. so we took 2 cars out before... he is a danger to himself I think.

worried. sad...angry..and sad again.

mamalama
Posted 10/2/2010 8:48 PM (GMT 0)
Oh MamaLama... how awful... I went through this with Mike who passed April this year... he kicked me out of the hospital at one point... and I had no clue what was going on... it was the mental confusion... I went through the binges... the ups and the downs... and the scariness that you are talking about...the evilness and awfulness of the downside of alchohol... then he had the TIPS procedure and made a commitment to be sober for a long period of time... 3 1/2 years... and they were good years... I can only say his only chance is with sobriety... only... and it may be too late as it is... but sobriety is his only chance... also... you need to take care of yourself... sounds like some very scarey situations... Alanon can help... I know it did for me...my thoughts and prayers are with you... I'm sure others will have more feedback...  Sandi
Posted 10/2/2010 9:01 PM (GMT 0)
I just wanted to welcome you to the forum, MamaLama.  You are right--the orthopedic doc should never have prescribed diclofenac, since a main side effect is hepatic toxicity, and also low platelet counts.

Is he still drinking?  It's vital that he stop.  No transplant center will consider him for a transplant until he has 6 months of documented sobriety.

So many people that contracted hep C decades ago are now dealing with the symptoms and damage.  I'm one of them.  I'm seen at Mayo Jacksonville.  With the thousands of new cases coming to light every year since testing became available in approximately '93, there's a real shortage of donors.

I know you will receive a lot of support here.

Hugs,

Connie

Posted 10/2/2010 10:29 PM (GMT 0)
are there any happy stories on this site that i can read? we are still in the diagnosis stage. i am praying that it is only hepatitis and not cirrhosis. i am scared scared scared. are there any stories of folks successfully managing symptoms/complications and living with cirrhosis for 10 or more years?
thanks,
emma
Posted 10/2/2010 10:54 PM (GMT 0)
My story is happy. Diagnosed with Hep C in 2001. It was from a transfusion when I was 14 (1964). Did the Interferon/Ribaviron therapy in 2004 and the virus was undetectable. Three months later I has a cerebral hemorrhage and the trauma helped my liver fail and eventually become cirrhotic. I entered a transplant program and 5 years later had a transplant. That was 15 months ago. See, it is a happy ending. They estimated I would have died within a couple of weeks had the transplant not become available.

Now for what's really important in your situation. Find another hospital that won't make make you wait months. You have to be your own best advocate. Don't take no for an answer. That doesn't mean you have to yell. Just go elsewhere if the hospital or doctors won't act with alacrity. This is your life and you owe it to yourself to make it your only priority. Let it go, and you won't have to worry about the other priorities. Good luck.
Posted 10/3/2010 12:03 AM (GMT 0)
Thanks to all who responded. I needed the support today. We will start calling Jacksonville and Shands and Moffet Monday! MamaLama
Posted 10/3/2010 2:22 AM (GMT 0)

For what it's worth, Mayo has the shortest wait time for a liver in the nation.  However, they will not accept HMOs.  I dropped my Medicare supplement so I can be seen there, as they will take straight Medicare.  They only accept Medicaid as a secondary insurance.

Hugs,

Connie


Posted 10/3/2010 1:42 PM (GMT 0)
ooops. he only has medicaid foe now. that may be a problem. his old private insurance was $19,000 premium with a $10K per hospitalization deductible. he was turned down for social security disability. he should reapply. but you still wait for the medicare part! oh dear. thanks connie
Posted 10/3/2010 3:20 PM (GMT 0)
Welcome to the forum MamaLama

My husband was turned down for Social Security and hired an attorney. He was eventually approved. It took about 2 1/2 years, but he received most of the back pay from the time he applied until the time he was approved. Since he had already waited over 2 years to be approved he was eligible for Medicare. Has he applied for Social Security since the diagnosis of cirrhosis?
Posted 10/3/2010 7:01 PM (GMT 0)

Try Shands Gainesville.  I've heard they are pretty good.  It also took me 2 years to be approved for SSD, so by the time I got it I also got Medicare. 

Hugs,

Connie

Posted 10/4/2010 3:17 AM (GMT 0)
The first day on this board and I have 3 actions for tomorrow:
1. Look again at SS Disability
2. Call Shands
3. Work with oncologist to get earlier appointment at UMiami than Dec 23rd. First available...UGH

Oh...and try to be calm while his moods swing widely from vile to desperate and dispondent.

Thanks everyone. ML
Posted 10/4/2010 3:33 AM (GMT 0)
Hi Mamalama and welcome to HealingWell.

about his mood swings........try not to take it personal. It's not you. It's him .......he is going through an awful lot right now. And people tend to take out their stress on the ones closest to them. I know it's hard. At least it was for me to keep my big fat mouth shut when my husband would get hurtful with me. To this day I have a problem with my temper when provoked. It must be that red hair that I used to have. My red hair went away.... but it didn't take my temper with it. shakehead

Good luck with your list tomorrow........thoughts and prayers.........
Posted 10/5/2010 12:37 AM (GMT 0)
Oh yes. My family has experienced the mood swings. Both from the Hep C treatments and cirrhosis. They are not fun. But somehow we go on and enjoy each other on better days.
Posted 10/5/2010 3:32 AM (GMT 0)
Mamalama-good luck on your list tomorrow. I will pray for you.
Posted 10/5/2010 4:57 AM (GMT 0)

Big congrats to your hubby, Emma!  Now staying sober is going to be the big challenge, but if he keeps going for help every single day, he will make progress.  How often is he supposed to go?  If it's only 1-3 times a week, he should be going to AA the other days (unless he has a doctor appointment.)  They say we have to put as much time into our recovery as we did drinking, and alcoholics generally drink daily.

My guess is that his weakness and slowness is part withdrawal, part liver disease, and part nutritional deficiency.  When we drink alcoholically, we don't eat right or at the right times.  Since alcohol is high in sugar, I was told to eat ice cream or a candy bar in the beginning.  It will help him some with the shakiness.  While he may feel better within a few weeks, it will take a good 6 months for him to come out of the fog he's been in; to start sleeping normally and eating regularly.  And then with the liver disease, there's always going to be the fatigue.  But he's off to a great start.  I KNOW how hard it is.

Thanks for the update!  I'm rooting for him!

Hugs,

Connie

Posted 10/5/2010 4:31 PM (GMT 0)
Today is day 13 of mom's stay in the hospital, and since 2-3 days ago, she has basically stopped talking. This really scared me since she was already sleeping all day. The nurses tell me that when the ascites is really bad, as hers is, it becomes hard to talk because of pressure on the diaphragm. Has anyone else experienced this? She's also only been eating about 600 calories a day, half of which she vomits at some point, so she's been told she has to drink 3 Nepro a day - problem is, does anyone really like the taste of Nepro? She doesn't. It's just so frustrating because I keep telling them that she's nauseous all day and vomits almost everyday, so they give her Zofran, but obviously it doesn't seem to do any good. It's hard to force someone to eat something that they're convinced makes them vomit, and will leave them even more dehydrated. I know liver disease is a HUGE balancing act, and everyone has different symptoms, which is what makes it that much harder.

Everyday I'm scared to leave because she seems in terrible condition, what to me would look like "the end", but her transplant coordinator told me she has to get "sicker" to get her MELD score high enough to get a transplant (they don't start transplanting here until about 35, and she's a 27). What can sicker look like?! She's already got awful ascites that no amount of diuretics seems to help, edema, varices, shortness of breath, confusion, and extreme jaundice. Sometimes you ask her a question and she can barely open her eyes long enough to slightly nod, if that. And I know it's important to keep a semblance of your own life going on, but I'll admit it's really hard to do that when in the back of your head you're always wondering if she's just going to crash at any minute...

Just needed to vent, so thanks in advance for reading!
Posted 10/5/2010 5:44 PM (GMT 0)

Hope, I can understand your frustration.  Remind me again of where you are.  Here, she would definitely be eligible for transplant...although she may be too ill to undergo surgery.  That's the tricky part--having a high enough MELD to qualify, but also being well enough to survive surgery.

Is there any food or drink (not alcohol, of course) that she REALLY loves and could eat or drink?  Perhaps you could bring it to her (how about a milkshake?) and see if she will take it, perhaps with a straw.  The very low calorie intake is going to make her extremely weak and more tired that she already is with the liver disease.

I do think you need to be aware that she may not make it to transplant.  Have arrangements been made for "the end" and has she made her wishes known?  Do you have Power of Attorney?  It's important to have these things in place ahead of time, in case your fears become reality.

Big hugs,

Connie


Posted 10/6/2010 1:01 AM (GMT 0)
Hi Board, Good day in MamaLama land. Hubby is 7 days on the wagon. 5 days on the lactalose. And I assume his ammonia level is winding down (from 114 last week). He slept less today and was active for a good bit. We even went shopping and cleaned up a shelf in the pantry together! I am cooking way less meat and made a veggie dinner he liked and actually ATE! Mood swings were mild today, for the first day in WEEKS.

Here is the great news: We were desperate about getting him to a major med center last Friday. Then, like magic, UMiami moved his appointment up from December 23rd to October 25th and called him first thing Monday morning. His hematologist called down there with his blood work and they finally paid attention!!!!

Every day is a challenge, but I think he is going to stay sober now. He has had a good look at what his coming for him and, please God, let's hope he is scared straight this time.

Thanks everyone. ML
Posted 10/6/2010 1:44 AM (GMT 0)

MamaLama, that's great on all counts!  How often does he go to the support group?  The danger (and I've seen it many times) is that they start feeling good and think they can have "just one drink."  Or something stressful happens and they can't handle it.  Now that he's got the alcohol out of his system, he has to learn to LIVE sober.  And that's the hard part.  Appreciate the good days and truly take it one day at a time, ever mindful that tomorrow could be different.

I'm very glad that U Miami moved up his appt. 

Hugs,

Connie

Posted 10/6/2010 10:23 AM (GMT 0)
thx, connie. ml
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