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Posted 5/3/2011 9:34 PM (GMT 0)
There's a very good reason that doctors are loathe to deal with drinkers who come to them with liver problems. One doc said it's like throwing good money after bad. In most cases taking care of serious drinkers takes valuable time from those who really need help and aren't going to trash their recovering or transplanted liver once things seem better. Many transplant docs refer to it as the "Mickey Mantle Syndrome." He was a great baseball player, that drank 2 livers to death. Not having been much of a drinker to begin with and having not had a drink for years prior to getting into a transplant program there was never a question raised about my imbibing. It made an immense difference.
Posted 5/3/2011 11:28 PM (GMT 0)
I have to agree with David.  I understand that a life is a life no matter but with vital organs being in short supply, why push someone who opted to and continues to opt to drink through for transplantation when they aren't showing any signs of wanting to improve their health?  It would seem that the person who refuses to acknowledge or take part in sobering up will revert back to what got them there in the first place.  As it's been already said that when he does have a good day, he drinks more thinking things might be fine. 

I know that addiction is a disease (I spent 8 years working in substance abuse research), however, it's a self-made disease.  Addiction can be "cured" as evidenced by some of our members who have fought (and continue to fight) the tough road it takes to get there.  I don't intend to offend anyone but I know that I would not be happy if someone who refuses to give up drinking got a liver before I did, if the need ever arose.  I didn't ask for my disease and as soon as I was diagnosed (actually before when I realized it was my liver that was having problems), I stopped social drinking and haven't had one drop.

Natasha, I do wish your hubby stopped.  I also believe the NHS should at minimum follow up and stress to him what is going on and treat his symptoms and advise what can be done to help him be more comfortable.  The sad thing is that if he is more comfortable, he'll just drink more from what you've said.  I can only imagine how hard it is for you and the kids.  I think it's great that you recognise the need to get them out of the house and enjoying life.  It can only help all of you.

You also said that you don't know why 10 weeks ago they said he had early stages and now he seems to be end stage...every liver patient is different.  Liver disease can progress slowly or extremely fast.  The constant drinking will only speed it up.

My heart goes out to you,

Posted 5/4/2011 10:54 AM (GMT 0)
Natasha, has ur husband seen anyone other than the GP? You can request that ur GP writes an urgent direct referral to the consultant. They can do this and bypass the choose and book system which to quote my sister's consultant's secretary, may never be seen again. If ur GP is not being helpful, try another in the practice. You will have to put pressure on them to do this, but dont be put off because we have done this for my sister. Whether or not the GP feels that alcoholics have no right to the same medical care as those who dont drink, goes against the hypocratic oath. They are not there to judge although some of them behave like God, they are there to provide the best care for one and all. Do not let them dismiss u and once you have got them to send the referral you can then start nagging the consultant's secretary for a cancellation. Mandy (UK)
Posted 5/4/2011 4:19 PM (GMT 0)
n.c.b.b; i am so sorry to hear about your mum. and she gave up drinking too. its a horrid disease. must be so hard for you. thanks for the words of comfort, though i feel you probably need them more!xx
dany, david and rick; i completely agree with you as far as the treatment and liver transplant goes. i see how the cost, moral obligation and effort is much better placed with someone who stands a better chance of not wasting it, (to put it simply). obviously i am upset with my hubby that he is willing to do this to himself and has no intention of giving up drinking, i do realise that he has to want to give up and he has to want to live. what i would like from the doctors though is just an update of what exactly is happening to my hubby at this time. one doctor says one thing and another says something different. he has had no scans since august last year and not due for one untill november of this year. i would just like to see someone that can give me an exact diagnosis on hubby so we know what we are dealing with. i do not expect them to offer him treatment as he is still drinking but just a little information on his personal state of health. it is this lack of care that has me riled, not the refusal of treatment, im rambling again!!. sorry. thank you all for your ssupport, it really helps!x
sister 3; thank you for the advice, have seen around five different g.p. now and each one says something different! honestly! it has ranged from sending him home with rennies when his ascites first flared up, right to the promise of clinical detox. i rang the specialists secretary and she said if there were any cancellations she would write to our g.p. for them to refer on an urgent. i wont hold my breath!!. thank you for your advice.
every one, yet again has been so supportive to me in my moans and groans and i thank you all so much. xxnatasha.xx
Posted 5/4/2011 5:20 PM (GMT 0)
Well, I have a new view on this...

Mike was a drinker all his adult life and a drug abuser early in his life...and so both Hep C and alcoholic liver disease were his road to ESLD.

When he was desperate last summer/fall, the docs were pretty clear...you will die within 3 months OR you can give sobriety a shot.

The man sobered up the first day it was put like THAT. And I believe he is done with it.

He quit drugs cold turkey and he was using heroin.

He quit smoking and was a 2 packs of Marlboros smoker.

And he quit drinking in September 2010 and that is done for every.

He got his new liver May 2, 2011 and he better NOT ever think about drinking again!

They were very nice to him at the transplant program when he proved he was really done with the booze.  But the head of surgery was very clear...if you drink, we drop you like a hot potato.  If you stay sober we will take care of your meds and treatment for the rest of your life!  And he pretty  much is tethered to his post transplant care OR ELSE.

At first when transplantation was introduced, he felt unworthy...that he had gotten himself in this position and the livers should only go to folks who had liver failure for reasons outside of lifestyle choices. But with some therapy and from a side email from **David** he changed his tune. Some poor guy was likely to make a mistake and die anyway...so what better way to celebrate a life too short than to donate organs to others with a chance to live.

I've done a lot of reading on Alcohol treatment programs. There is a 90% recidivism rate for alcoholism. Bad statistic.  But there is a good side. If you keep quitting enough times, you get to be in the 10%!!!!! There is always hope.

I have also read that the rate of recidivism post transplant is VERY LOW.  Woo Woo. That is a statistic that makes me smile.

Good luck.

Carol

Posted 5/4/2011 5:28 PM (GMT 0)
thank you carol!! you are great! truly! i feel like im getting to know you all so well, and i find that strange as really we are all just words on a computer?!. i love getting my ten minutes each day to come on here and catch up with everyone and see how you all are. the advice, support, ups, downs, emotions and life stories are amazing. i love you all and love this forum!!xxnatasha.xx
Posted 5/4/2011 6:30 PM (GMT 0)

Carol, Mike sounds soooo much like me...except that I stopped drinking long before hep C diagnosis...just because I didn't like who I had become and knew I had hit my own bottom.  I also had kicked heroin cold turkey, back in '69, and quit smoking cigs 8+ yrs. ago (I still want one.)  So I hope I can go through transplant as well as Mike has.

Natasha, you are a beautiful addition to this forum.  :-)

Hugs,

Connie

Posted 5/4/2011 6:50 PM (GMT 0)
thank you so much connie! i think what you have been through is so brave and you are a true fighter, you will win connie, im sure of it! mike and carol too have been through so much and are still fighting on,, remarkable. i will wait and pray that my hubby sees sense before it is too late.xxnatasha.xx
Posted 5/4/2011 8:59 PM (GMT 0)
One major reason for the recidivism rate being low, is precisely due to more screening for transplant recipients. Booze, hard drugs, morbid obesity and psychological problems are reasons you won't receive a transplant. They will give smokers a chance if all else checks out, though they push hard for patients to quit.
Posted 5/4/2011 10:12 PM (GMT 0)

Don't worry, David.  I may have a fleeting desire for a cigarette, but won't take even a puff of one...because it's the same as alcohol--I'd be off and running!

Hugs,

Connie

Posted 5/4/2011 11:16 PM (GMT 0)
My mother smokes and this weekend when she pulled one out, I almost took one to see...I'm glad I didn't. Tobacco is the only substance that I had trouble kicking and why start again.
Posted 5/4/2011 11:52 PM (GMT 0)
Good choice! Smoking is a nasty expensive habit and it is like putting nails in your coffin. Especially when you are 40 or over. It interferes with breathing, blood circulation and some use it as a way to keep weight down. It's much easier to excerscise and eat the right foods. Cheaper too! BostonMike.
Posted 5/5/2011 12:08 AM (GMT 0)

Connie,

I've known many a smoker...grew up in the smokiest house (step dad smoked 3-4 packs a day - the ultimate chain smoker - and mom had about 1 pack).  It's probably why I never liked it.  Mom has lung cancer now (it's non-small cell which is usually the non-smoker 2nd hand smoke variety and who knows what causes the horrid cough my step dad has as he is one of those who won't go to the doc).  I think it's wonderful that you have quit and even in the scariest of times, have been able to consciously avoid it knowing what that addiction will do.  I'm very proud of you....and you too David....and everyone out there who has kicked whatever habit they had. 

Rick, you are an inspiration to many having come back from the edge.  I do hope the caregivers can make their loved ones see that there is hope in letting go of the fears they have in needing to let go of their addictions.  We do have some excellent examples and info from people who have been there...I hope they begin to listen.

Mary, glad to hear Mike is doing well.

Posted 5/5/2011 2:44 AM (GMT 0)
Garsh, Dany,
I thank you for your nice words. But there was no choice. I knew, one puff and that'd be it. Now that I know your name, you're definitely a member of the tribe. Are there any caribou where you grew up? Or perhaps escargots running rampant. I love it when the crepes are in bloom.
Posted 5/5/2011 4:22 AM (GMT 0)

Nicotine was the most difficult thing to kick.  It took 3 tries before I finally did it.

Hugs,

Connie

Posted 5/5/2011 8:29 AM (GMT 0)
i am still in the early stages of giving up smoking! its been 3 weeks for me!, hubby still smoking though but then i would expect nothing different! seeing first hand that these nasty habits can jump up and bite you back at any time has given me the incentive i need, its bad enough my babies will probably lose one parent to their own addiction, i couldnt take the chance it may happen to me with smoking! im only 32 so smoking nurse reckons i can regain health of a non smoker by stopping now!. lets hope so.xxnatasha.xx
Posted 5/5/2011 10:50 PM (GMT 0)

Natasha, big thumbs up for you!  I stopped late in life, so there is some damage in the base of my rt. lung.  I did stop before developing COPD or lung cancer.  I'm sure if you stay stopped, in 10 yrs. or so you will have the lungs of a nonsmoker!  Keep going...one day at a time.

Hugs,

Connie

Posted 5/6/2011 9:02 AM (GMT 0)
thanks connie, every time i feel like i need a smoke i picture my babies faces if i were to get ill and that is enough for me to not do it again. i chose to bring my boys into the world and iwill not leave them willingly to go it alone, they need their mummy and i need them!!!xxnatasha.xx
Posted 5/6/2011 6:30 PM (GMT 0)
Natasha, wish more moms were like you.  It really galls me to see a mom with a baby on her hip, smoking away.

Happy Mother's Day in advance to you and all the other moms.  My "baby" is middle-aged now and still smoking.

Hugs,

Connie

Posted 5/6/2011 7:14 PM (GMT 0)
thank you connie, thats real nice!xx
your baby has their own choices to make though and that is the hardest bit of being a mum dont you think? im dreading them growing up!! did you call mayo connie? did they get you an appointment yet?xxnatasha.xx
Posted 5/6/2011 8:06 PM (GMT 0)

No appt. yet, but they are working on it.

Hugs,

Connie

Posted 5/6/2011 9:37 PM (GMT 0)

David, definitely more escargots running around...since I'm from Quebec!  I did used to love 'em so I'm happy they were the slow moving variety and got themselves caught and cooked up!  And...darned email!  Well, at least you know I was telling the truth!

Natasha, Kudos to you for quitting smoking.  Here's to you future non-smoker like lungs!

Posted 5/7/2011 8:05 AM (GMT 0)
thanks dany!!! xnatasha.xx
Posted 5/7/2011 8:50 PM (GMT 0)
I never doubted you, Dany. I've got a ton of slugs in my backyard, if you'd like some...
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