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Posted 6/16/2011 11:54 PM (GMT 0)

I, too, appreciate direct info and assessment.   However, I think that doctor under discussion was very rude.  He made it clear that he does not want to be bothered with Natasha's husband until he has 6 mos. of sobriety.  Considering that he's been alcohol free for 2 weeks, it wouldn't hurt him to order some tests. But he is obviously staunchly against treating alcoholics.  He has drawn a line in the sand.  If he were under private care or in the U.S., he would be able to change docs, but I don't think that's the case with NHS.

If it were me, I'd want to stay sober just to prove the SOB wrong.  But that's me.

Hugs,

Connie

Posted 6/17/2011 3:15 AM (GMT 0)
Bump..
Posted 6/17/2011 11:35 AM (GMT 0)
connie, i think that is hubbys attitude now, he had initially made the decision to be sober for himself and now he wants get on that list and show that man that good can come from bad! the doc was rude and very unprofessional and i am trying to get a change of hospital so we wont have to see him again. hard to do here though even though they spout about patient choices! pah!!!!.
emma, thank you for you kind words.
there is a big difference from tough love to down right arrogance.
carol, i am so praying that my story will turn out like yours and mikes,,,, pray pray pray!!!!!!!
xxnatasha.xx
Posted 6/18/2011 2:28 AM (GMT 0)
bump
Posted 6/18/2011 5:39 AM (GMT 0)

When I was newly off IV drugs and in outpatient rehab, I had a counselor tell me that he didn't think I would stay clean.  That was all I needed to want to prove him wrong...although in my heart, I knew I'd never touch the stuff again.  Strangely enough, my urine kept coming up dirty.  I now know that that particular counselor, who had access to my urine, was replacing my clean urine with his dirty urine.  I kept coming up positive for opiates and I wasn't even eating poppy seed rolls.  I don't think he was ever found out.

Hugs,

Connie

Posted 6/18/2011 5:49 AM (GMT 0)
Connie-what an awful man.  I am sure karma will get him.

Emma

Posted 6/18/2011 8:30 AM (GMT 0)
connie that is disgusting!!! what on earth drives a person to do that?????.

i have just received an email from a friend of my dads who works in the kings college hospital in london. i asked him to let me know in detail what the requirements would be to get a refferal to them for liver transplant eval. it would seem they dont just need sobriety. (which is between three and six months, not six.)!.
the patient must have refractory ascites, NO heart problems, (which hubby has), stable mental health (hubby does not have), no smoking (that could be beat) severe H.E, no liver cancer, no bleeding varices, and pretty much everything that connie has mentioned going through her eval.
my question is, we already know that hubby has some requirements and also has some issues that will not even get him as far as an eval.
he basically said, off the record, hubby would not be excepted as a refferal for eval. sober or not. im obviously not going to share this info with him as sober is better than not but again, this specialist has not been straight with him and i am really angry!!. just had to get that out. i know what the comments will be and that he has put himself here but its cruel to have told him he can have a chance of transplant when that man knew he didnt have a chance in h***.
that is not tough love, that is,,,, get out of my office and go die your death. i am so mad right now. xxnatasha.xx
Posted 6/18/2011 2:32 PM (GMT 0)
(((Natasha))), It's devastating to hear NO when you are fighting for you husband's life......it's hard to go from .....fighting with every thing you got to ......acceptance of there will be nothing to turn things around.

Once I accepted it.......I put everything thing into making my husband's last days on earth as good as possible for him........even though I was falling apart inside.
You do what you gotta do in each situation that comes up......one foot in front of the other.....one step at a time. When life hands you lemons.......make lemonade.....maybe bitter.......but a whole lot better than straight lemons.

Connie, that was despicable......but what goes round.......comes round......if he hasn't already got his.......he will.........How did you what he was doing?

Lot's of thoughts and prayers.........
Posted 6/18/2011 6:07 PM (GMT 0)
thank you for your words p.g;
will be a long time before hubby comes home,,, the deal was he had to get sober!!. he has started though so that is good steps in the right direction!
it may prolong his life a little by getting sober so it will still have great benefits.
guess it pays to listen your doctor the first time he tells you to quit or face the consequence eh!!
now he left it too late but hopefully he will buy a little more time by abstaining??
what was that song??? kay sara sara whatever will be will be.
xxnatasha.xx
Posted 6/18/2011 9:36 PM (GMT 0)
Natasha, it's Que Sera Sera.

I just figured it out later on that that was what had to have happened.  He ended up impregnating a patient, so if nothing else he had to pay child support for 18 yrs.  Totally unethical man. 

Natasha, hubby's cardiac problems would keep him from transplant, even if he had the sobriety. 

Thankfully, my lungs and heart are fine.  Hopefully, the kidney problem will not keep me from being listed.  My BUN and creatinine levels are normal...so I'm not sure of what clearance they are concerned about.  More than anything, I want to get the HCC treated SOON, so the tumor will shrink and I will feel less like a ticking time bomb.

I think PGs words about acceptance are very wise...and also from experience.

Hugs,

Connie

Posted 6/19/2011 6:17 AM (GMT 0)
I'm reposting this from the general forum... Just feeling lost and sad I guess:

Hi all,

Sorry to have gone AWOL so soon after starting, but Hep C/ESLD - Cirrhosis hubby hit the skids in a big way. He was released yesterday after more than a month in the hospital, one week of it spent intubated in MICU with a septic infection that nearly killed him; and now he's home with Hepatic Encephalopathy - and he's angry and mean.

I feel like I'm losing him in bits and pieces, it's awful. He's stubborn in the best of times but this has been an awful 30 or so hours.... He won't cooperate, keeps jacking up the bathroom heaters but won't drink enough fluid, won't give me his blood sugar numbers, won't do anything I ask him basically - and is treating me really, really badly. He's on 4 Lactulose a day, and 2 Xixifan along with probiotics and a host of other meds - could this be DIABETIC Encephalopathy?

He has an atrocious ulcer on his heel that requires home health care, but he tells me he's going to "fire" them. He's very paranoid on top of everything else. I feel hopeless, I have no real-time emotional support, and I'm running the gamut between panic, anger and grief. In addition to everything else, while he was in the MICU our beloved dog became unexpectedly ill and had to be put down. I thought I would lose them both on the same day - I'm still reeling.

I'm sorry if I'm whining, I KNOW his problems are what I should be focused on - but I'm so worn out. The hospital coordinator took his HE personally, and shoved him out prematurely, IMO. Also with only two hours notice, I wasn't ready... I don't know if I can do this.

His MELD is 18, and his first followup post diagnosis is on Thursday of this week - I'm terrified. I know he has to be too... The HE is the worst thing I could have ever imagined, and I wonder if he'll ever be normal again.

I guess I'm just venting - I'm exhausted and keep tearing up at weird moments. Sorry.
Posted 6/19/2011 11:24 AM (GMT 0)
thank you connie, i was hoping you would give me the correct spelling!!!!x

hi shellshocked,, so sorry you are having to go through this with your hubby. its extremely hard to have that anger directed at you. i started here as a caregiver to my hubby who has liver problems due to alcoholism. he is not living with me at the moment as it all became too much. he almost three weeks sober.
is there not any home help available to you other than the nurses? maybe someone that could sit in while you take yopurself off for a couple of hours??
lots of people here will offer you some great advice and also insight into this illness from those that have lived through it. their experiences are so insightfull and the caregivers are also amazing with what they do and the advice they can give.
i still come here just to moan mainly and get advice on hubbys condition!!.

connie,,, a bit of advice if you may?,,, in your personal opinion, do you think i am doing the right thing in not telling hubby that he will not get on the transplant list, even if he stays sober?? its playing on my conscience a bit, i dont like to lie. with the exception of father christmas and the tooth fairy of course!!!!!!xxnatasha.xx
Posted 6/19/2011 11:38 AM (GMT 0)
It takes a team and a proper evaluation before someone is turned down for transplant.

Let hubby get sober and go through the process. Don't shut the gate before the horse has bolted! Who knows what wil happen.....don't ever give up hope just because you have been told it is hopeless!
Posted 6/19/2011 5:38 PM (GMT 0)
Shellshocked. I will post 2 OLD posts of mine, from last fall/winter, when things were bleak at my house. Since then, Mike got on Xifaxan, completed his transplant evaluation and got a liver transplant on May 1st. Funny, we were talking this morning about the evil bathrobe and it's plot to take over Mike's world. There is light at the end of the tunnel...I just couldn't see it Oct - January...then he started to be treated for the HE with Xifaxan and returned to a sick but not derranged man. And now he has a second chance. How blessed is he?  Posted 11/25/2010 12:25 AM (GMT -6)     This is the part I don't really get.   There is a chance this is our...last Thanksgiving together, last Christmas, last New Years, last everything...   Or hubby might rally.  We just arent sure of the hand we've been dealt.  I've looked at the stats for his MELD score and it is not encouraging.   And I get that he has to work through how he feels about all this, and face his Maker, etc.   But why oh why is he spoiling every single second we have left?   I know about HE and about the Hep C fog.  But does he have NO filter left at all?  A filter that might tell him to quit sniping all day long...at me, at others, at the TV.  It is amost too much to take.   Right now we have a lull...he is in no pain, his symptoms and blood counts seem to be in order. He is going to his AA meetings, staying sober, not driving, resting, eating mostly nutritious stuff (when he eats).  And hoping to get on a transplant list.   And if he has no filter, what can I do?   I kidded him today before his afternoon rest.  He was sniping at me about something (maybe his favorite theme--what a terrible driver I am) and I told him I was going to put on my caregivers hat...and took his elbow..."Ok, Mr. Hubby, it is time for your nap", guided him to the bedroom, then closed the door.  I was so proud of me not to snipe back.  Though I would have liked to slam the door after delivering a snotty retort (or twelve).   This must be so hard for him.  But it is hard for those who love him as well.   Thanks for listening. Mama Lama Posted 12/7/2010 10:26 PM (GMT -6)     Mama Lama Here   I don't intend to whine...but maybe just to vent a little.   Today was hard.  Two doctors appointments and an AA meeting for hubby.  A lot for him with very little time to rest in between.  He was tired, sure. But the HE is bad this week.  He doesn't see Hep Dr until Monday and wish it was tomorrow.   The dermo this morning gave us two kinds of lotion for the dry dry skin he has on his legs, back and behind his ears. The ENT told him that the fish bowl feeling he gets in his head is likely from the HE as his ears and sinuses and down his throat all look normal.  (Anyone know anything about a full feeling in ears and head with this ESLD thing?)   He keeps getting furious with his envornment:  his bathrobe knocked his juice to the floor, his phone is a piece of junk and can't make calls, the stupid William Sonoma catalog was too slippery and made him drop all the mail in the parking lot outside the post office, and I TOOK the applesauce out of his lunch bag. (it was in there hiding behind the napkin and chocolate ensure, of course!)   I asked him if he could tell the difference between a good day and a bad day?  He had no idea. I asked later him if he could tell that his speech was slurred and his gait crooked today?  No, he could not.  Today seemed like a normal day, he said, except I "started on him" as soon as I got up and that gave him a bad day.  What happened? I asked.  He couldn't remember.    Nothing happened. He was fine while I was in the shower.  Then got off track when he spilled a glass of apple juice laced with lactulose in the kitchen.  The poor man.  61.  An athlete, a taker care of things person. A computer specialist who couldn't figure out how to get his jacket on today.  A skiier, a golfer, a lover of music, a man who still reads 3 books a week and knows every Jeopardy Question...reduced to how many poops he had and how many pills he took!   I miss my Mike.  I miss my life.  This is so terribly sad...    ML  
Posted 6/19/2011 6:07 PM (GMT 0)
Carol-what a long way you and Mike have come. I remember reading those posts when you original wrote them.  I am so happy for you both that he had his transplant. Happy Father's Day to him today.

Emma
Posted 6/19/2011 6:14 PM (GMT 0)

I agree with ML--don't shut the door on his sobriety.  Only good things can come from him staying sober, so don't give him an excuse to drink.

As Hepmom said, his placement on the transplant list will be decided by a committee.  But I've seen people rejected for cardiac reasons and based my statement on that--perhaps it was premature if he hasn't been thoroughly evaluated.

How long has he been taking the Xifaxan?  Perhaps it needs some time to work.

Present him with a tall glass of iced water with a twist of lemon to encourage hydration.

Hoping for better days for both of you.

Hugs,

Connie


Posted 6/19/2011 7:26 PM (GMT 0)
Hello Shellshocked,

When I read your post I saw myself about 9 months ago. My husband was going through an HE bout and I didn't understand him or it or what to do. He said things that were hurtful and uncalled for and really didn't make any sense at all. He told me he didn't care for me at all and he said the same thing for 4 days and finally I said I don't know what is going on with you but there is something wrong, or I am moving out....we've been happily married for 30 years till this time. He is on the transplant list and has been since 2000, he is also diabetic with Hep C, he drank when he was in his early 20's but was told his liver levels were elevated and to stop drinking so he did. At the time they didn't have a Hep C diagnosis, just non a and non B. He's 54. When he had this episode of HE he had his kristalose increased to 2 packets a day and his Xifaxan increased to 550mg twice a day. I wake him up in the morning to give him medication to keep his brain balanced as much as possible and if I see him acting a little strange I give him another packet of kristalose. We also make sure he is having enough bowel movements. We try and have a very calm enviroment around the house and try to keep the stress level down as much as possible. He is also on Xanax to calm his nerves which has helped. As his caregiver, I think at that time I was the one who needed the Xanax. It is extremely hard to watch your loved one go through this and not be able to do anything about it. Just breathe and take it one day at a time. Know that you are not alone and we do the best we can. If he is to hard to handle call an ambulance and they will give him more medication to clear his brain at the hospital. I haven't had to do that yet but will if I have to. I've seen the nasty side of my husband when the HE is acting up it's scary....I think I might have to invest in boxing gloves....I didn't realize how mad I got, I just wanted to punch him....I understand he can't help it but that doesn't matter to much at the time when your dealing with it....I try to have a sense of humor about things or I think I would go nuts myself. I also have learned that getting all worked up yourself doesn't help....try to remain calm and believe me I am working on that one. Try and keep his medications on time and his diabetes controlled and the HE I think is better to handle. Get some time away from it all. Even if it's for a few hours, I know for me I feel so much better....Stories like MamaLama helps!!:)

Hang in there,
DDMom (Kathy)
Posted 6/19/2011 10:07 PM (GMT 0)
Oh thank you, thank you all so much. Reading through these posts today really gave me a much better sense of this, and maybe even a little perspective...

I'm not sure how long he's been on the Xifaxin, but I think it's only been the last week or so. I have him on a STRICT low animal protein and low sodium diet.

He hasn't been evaluated for a transplant yet, that starts this Thursday I believe. I was very surprised when I went to the ICU after he crashed and his doctor met me and told me that - it's so counterintuitive in a way, the sicker you are the faster you move up the list, the healthier you puts you further down - he's 57 and I think in NYS the cutoff is 60, so I'm really nervous. I think he will qualify - the diabetes has been under control, BP is in range, he doesn't drink and never really did beyond a glass or two of wine, and his vitals are all good - there was some concern about his kidneys, and the liver function is very poor I believe. I have a feeling the HE will be the biggest problem in that regard.

I can't tell you how much I relate to the posts about the personality shifts, and these men who have been so robust, in control, high-functioning becoming frail, confused and scared. It breaks my heart to see it with my husband, and it breaks again when I see that you have all had to deal with it too. Thank you again for sharing those posts with me, you give me hope - and I'm hanging onto every thread, but knowing there can be light at the end of this also gives me strength.

We are also brand new to the Medicaid process, although so far I haven't run into any horror stories - I am already scared about next month while things are still being determined, his meds this month were well over $2500. The Xifaxin alone is running $1100 - we recently started a new business, that started to take off just as he got sick three months ago. To think I thought financial worries were as bad as it got.... Yikes.

I appreciate the kindness and the excellent info here - Connie, you are amazing and very inspiring to me.

I wanted to quickly check in, and will be back later - we had a decent day today, saw his son and our grandkids. He's exhausted, but content so I am thankful! My doctor gave me Xanax, but I don't like to take it unless I really need it - he actually has an awful reaction to Xanax, Lexapro, Haldol... They gave him 1MG of Versed (sp? Sorry!) from the Valium family while he was in MICU and it knocked him out for hours.

Thank you again, I am so grateful for this site. I really don't know how I would have gotten through the last month without reading through the wealth of postings and info here... As things settle down, I hope I will be less of a mess and more organized and engaged with the forum, and all of you!
Posted 6/19/2011 11:24 PM (GMT 0)
Shellshocked, since transplant is under UNOS (United Network of Organ Sharing), I don't see how they could have different cut-offs in different states in terms of years.  I was told 70 is the cutoff and I know of people older than 60 who have had transplants.  This is something you can ask about when he starts going through evaluation.  What transplant center is he using?

BTW, you spelled Versed correctly.  Sounds like he's very sensitive to certain meds.  Glad you have Xanax in case you need it.

Regarding Medicaid, it is much easier to get it in NY than in FL.  It does differ by states, but they are going to consider your combined income.  They will also take savings, etc., into consideration.  Just hope you are not over their income limit.  I believe they will decide financial eligibility based on the last year, but perhaps it's by the month.  Someone (ML!) can post about this.

You should get the paperwork for Social Security Disability and fill it out for him, if necessary.  They will consider him for SSD/Medicare and SSI/Medicaid at the same time.  Either of these take time to get approved, though the Medicaid can be approved rather quickly.  Make copies of all his medical reports regarding this illness and make sure you get the reports (or he does) from all the evaluation testing to give to SS.  On the final page of the application state "TERMINAL ILLNESS."  That will push it through a lot quicker.  If he is denied, appeal it and get a lawyer if he is turned down a second time.  The lawyer only gets paid if he wins the case for your husband and his fee (25%) will be taken out of back payments.

Post-transplant meds are in the thousands per month, so he will need insurance for that.  I have both Medicare and Medicaid Medically Needy, so I will have very little out-of-pocket expense.

I'm glad to hear that you've had a calm day.  Enjoy it while it lasts!  Perhaps when he is on the Xifaxan longer or it is increased, his HE will become manageable.

Hugs,

Connie

Posted 6/20/2011 12:11 AM (GMT 0)
I have to agree with Connie about the outside age for transplants. Seventy is the limit. In other countries age limits vary. Some of them (such as Japan) don't even do transplants. You're in NY, so it should be 70. I checked with a hospital in NYC about a transplant, but didn't follow up as they have less organs available than in Massachusetts. Florida is probably the easiest state for liver transplants (no helmet law for motorcycles). Ask again at your hospital.
Posted 6/20/2011 12:20 AM (GMT 0)
Thanks Connie, I think we may qualify for Medicaid (I hope!) because our business hadn't started to really make money yet, and he has been sick for months which impacted our earnings - which ironically will help us now. I think the look-back is six months, at any rate I am closing the business so we will probably qualify, if not sooner than later.

In reading through here a few weeks ago, I saw a post (yours I think) about SSD benefits and filing with the medical records, I have made sure to use terms like "End Stage" and "Terminal" every time I talk to anyone regarding benefits - I really meant it when I said I've been using this site religiously over the last month!

I ran into some issues with the case coordinator when he was released and I felt she was very vindictive, the Medicaid rep I spoke with gave me a SSD form for the doctor to fill out, and the case coordinator told me they wouldn't do it, his GP had to. We are changing GP's and he has had no interaction since the diagnosis was made. I am irritated but trying to stay focused on the big picture - and not let petty jerks get in the way. I will call his Hospitalist Team tomorrow and ask about the status, if they haven't filled it out then I will get it back and bring it to the Hepatoligist/GI docs on Thursday. The CC told our nurse I needed to be taught a lesson because I asked that my hubby get a shower and fresh wound dressing before his weekend release - lesson in what?!? LOL, I think I'm learning plenty as it is! I also bumped the Medicaid process from the hospital business office directly to the state by asking for an advocate because they started becoming adversarial after his HE kicked in and he refused to sign anything. It was stupid, I'm his PoA and HCP they shouldn't have been dealing with him.

The attorney suggestion is good to know, I hadn't realized you could do that - thank you.

He really does seem better today, we had a rough start but our visiting RN was wonderful and really spent time on the HE issue with both of us - he was very respectful and genuinely listened to Dick (hubby) which meant a lot to both of us. I think the Xifaxin is working - fingers crossed!!!!

I am very, very glad you have good medical benefit coverage and will keep you in my thoughts and prayers that your transplant comes quickly, and with a speedy recovery.

Thanks again for taking so much time to talk me through this - I know after this week I will have a LOT more questions, and I am encouraging Dick to join as soon as he is able to. He's my best friend, and a really wonderful person when HE isn't rearing it's ugly head!
Posted 6/20/2011 12:23 AM (GMT 0)
Thank you, David! I will ask, that would be so encouraging right now! And thank you for the chuckle re the lack of a helmet law in FL. My parents live there 8 months of the year, maybe we should relocate, LOL. ;)
Posted 6/20/2011 1:01 AM (GMT 0)

Shellshocked, where is he being seen?  I am being seen at Mayo Jacksonville (FL), which has one of the shortest wait times in the nation.  People come from all over the world to go there.

I know in NY a transplant candidate MUST have a primary care doc and a lot of things go through that doc.  My best friend's significant other has gone through eval at Beth Israel, but had to get a PCP via a Managed Care Plan (HMO.)  I've also heard that after transplant, anything the PCP prescribes must go through the transplant team--or at least the coordinator.

On another note:  You said you are keeping Dick's animal protein to a minimum.  He needs protein, but it's mainly beef he needs to avoid, as it's too hard for a damaged liver to metabolize.  Fish and skinless chicken are okay.  If you want to keep it minimal, be sure to increase plant protein, such as legumes and soy products.

I'm so pleased that you have found this forum beneficial.

I'm out of here now, since I'm not a caregiver.

Hugs,

C.


Posted 6/20/2011 2:22 AM (GMT 0)
Re aging out.

I met a woman who resided in Florida who was told she had aged out of the transplant program in Miami.

She took herself to NY, lived with relatives and got a new liver at 70!!!

Now maybe she didn't tell me everything...or I got the ages wrong, but she was no spring chicken!

I got the sense that she was NOT a Medicaid gal.

Re Medicaid and SSD. The information on the Internet is pretty helpful.  I used the applications you do online and it was great.  Hubby got Medicaid, but not SSD (he qualified medically...there is a long list of criteria, rather he had been ill TOO LONG and didn't have enough current quarters!).

Good Luck.

Carol aka MamaLama

Posted 6/20/2011 6:28 AM (GMT 0)
Hello to all ,
It's Karen ,wife and mother and caregiver to Michael. He's not really insane . David and Rick bring out the comedy in him.
Natasha , Are there BBC shops over in England ? There are ABC shops here.,but they don't stock any Minder gear .Michael's too scared to come on this thread. funny though , he'll usually talk to any woman . We used to love Minder ,every Monday night on ABC. I will join in when I have the time .So take care all.
Karen

Post Edited (Pink Ribbon) : 6/20/2011 12:33:27 AM (GMT-6)

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