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Posted 11/19/2009 9:27 AM (GMT 0)
I don't know his MELd score... his statistics.... but... he has end stage liver disease... Cirrhosis... Hep C... Ascities... TIPS procedure... jaundice... nausea... limited apetite.. some confusion.... and now.... a mass in the liver....

and yet he reaches for that can of beer... oh, he can't drink but one any more... but yet... he still reaches... for it... and how can I agree to be a part of transplantation when I know he will grab for that beer and destroy another liver... and I can not take the time off work and risk my life for nothing....

I love him with every breathe in my body... but I can not commit suicide to help him binge again and destroy another liver.... and he admits that is what he would do... and I feel like I hold his life in my hands...

well, God does...

we're not married... yet I feel married... I do have his power of attorney.and advanced medical directive all filled out...

Monday... got to find out about the mass.... he's living in a fantasy world... and oh, I do love him so...

 

Posted 11/19/2009 11:28 AM (GMT 0)
if he wont stop drinking there is nothing u can do but prepare yourself. i am sorry i cant say more as i am not myself right now as my mom is dying right now, but i hope and pray for the best for you and good luck
Posted 11/19/2009 4:20 PM (GMT 0)
Hello arneeb and welcome to HealingWell. So sorry that you are dealing with liver disease. It's a tough place to be in even when every one's cooperating. But to have to stand by and watch a loved one slip away because they couldn't stop drinking is especially hard.

As much as you love him, the decision was his to drink or not. I'm sure he knew what it was causing, just didn't want to face it. I went through the same thing with my husband. He ended up being able to quit drinking about 2 years before he died.......but it had already taken it's toll.

Transplant hospitals will not do a transplant on anyone who who was a drinker and has not stopped for so long and been through some kind of alcohol counseling program. So even if you wanted to give him part of your liver, they wouldn't do it.

I can tell you not to feel guilty but it probably going to happen anyways. It's one of the feelings that surface especially for care givers once the patient passes on. I know that caregivers do the best that they can do and when it doesn't turn out well, quilt will rear it's ugly head for no good reason. It took me over a year to stop feeling guilty over my husband's death. The " what if's and the if onlys" are endless.

Anyways we are here for you........take care.....thoughts and prayers........
Posted 11/24/2009 3:28 AM (GMT 0)
Arneeb,
Just Checking to see how the tests went today, hope you are well...

DK
Posted 11/24/2009 5:08 AM (GMT 0)
Confused..... Mike is going for a Biopsy... which is not set up yet... but his Meld score which was 15 in June of this year is still 15.... however he has a 5 mm or cm whatever "spot" on his liver that they are going to biopsy... I tried to get more out of this Doctor... we had gone to a urologist because Mike had severe Kidney stones.... and one was blocking the bladder... so we went through cat scan, MRI... etc... and put him on Flomax... the biggest one passed.... and in the process of doing the MRI for the bladder.... they saw what had been described to us as : "a fatty area in the liver", "an area of concern", and the MRI technician told the urologist the "mass had gotten bigger"... I questioned the Dr. about his use of the word "spot" and I'm thinking that spot means mass.... how in the world will I know... I just know they're gonna stick a needle into whatever they are calling this and check for cancer.... so I have my prayer warriors on this... and for now... we're gonna have an excellent Thanksgiving.... we're gonna put up the Christmas tree on Friday... my birthday.. I'm gonna make the world go away for this day and time... and next week we'll face the "biopsy"... so I think it was a mixed bag of news with some darkness looming overhead... we will smile in the moment and pray God gives us the strength each day to walk this path... and we are so blessed to have found each other in this jungle of a world
thank you for your thoughts and words... Sandi AB
Posted 11/24/2009 5:18 AM (GMT 0)
Well, I hope you have a wonderful Thanksgiving and Birthday-- Happy Birthday early!

I am having dinner at my house again this year, I am really excited.. accually Thanksgiving is my favorite holiday... all the good food cooking, the house warm from the oven... and the smell of turkey and all the other yummy foods cooking!!! I always go way over board, but thats ok... love the left overs!

 

so far my hubby is still sober and taking his meds, he is starting to feel better again, so that scares me.. whenever he starts to feel a little better he thinks he can drink--- I am praying for a sober Thanksgiving for him, we wont have alcohol in the house ( we never do or did) he just always had his-- The eleven years we have been togeather he has always drank on the holidays and was passed out before dinner was even served-- so a sober Thanksgiving will be a welcome change... I have Wednesday, Thursday and Friday off work, so we will also put our Christmas tree and decorations up this weekend.... I do have some good news I found out that my first grandchild will be a boy-- he is due in March and I am getting really excited about that.... again happy holidays to everyone! take care!

 

DK

Posted 11/26/2009 7:01 AM (GMT 0)
what wonderful news.... having some people over... I do volunteer work in prison re-entry... and two of my recent releases have no where to go... so I scrambled to get all the fixings.. and we're gonna had them over...

and Mike is doing so well... we are so blessed right now... he's been helping me with some little carpentry projects... although... come to find out... me is better carpenter...
thank you so much... everyone... and please have a Happy Thanksgiving... we are so blessed to live in this country... and any veterans... thank you ... thank you... thank you
Posted 11/27/2009 10:35 PM (GMT 0)

Sandi, I hope Thanksgiving went well.  And Happy Birthday!  I just wanted to comment on the "spot" on Mike's liver.  My last CT scan showed the same (1.5 cm..a mm is much smaller.)  I had a huge liver tumor in '05 (12 x 11.5 cm) that necessitated removal of the rt. lobe of my liver.  So I only have the left lobe now and get scanned about every 6 mos.  I just wanted to mention that Mayo never biopsies me.  They do an MRI with IV Gadolinium.  That particular contrast makes any cancer "light up like a Christmas tree," I was told.  I am having this done Dec. 11th (have had several previously.)  You might ask if this could be done instead of biopsy.  A biopsy is an invasive procedure and better off not done if there is an alternative available.

Hugs,

Connie

Posted 11/28/2009 2:30 AM (GMT 0)
Hi Sandy, I want to wish you a happy birthday also. And sure hope your holiday went good. I over did it and messed up my sciatic nerve again. Can't sit,stand or even lay down too long.

They would not biopsy my husband's liver either........they said that it was too risky. Like Connie, they did the MRI with contrast and his cancer did light up like a Christmas tree.

Thoughts and prayers..........
Posted 11/29/2009 4:52 AM (GMT 0)
well, they had done an MRI but probably not that type... and when I spoke with the xray department on Friday... they said some weird stuff about they didn't know if they could xray that part of his liver... and it was just a strange conversation... and they were going to get back to us...
been trying to tell Mike that some of this stuff he isn't gonna want to do anyways... I had read about seeding the cancer with the biopsy...
I'll talk to the Dr. again about alternatives... had a very nice Thanksgiving and birthday... however; Mike very emotional and talking about dying and stuff.... and I'm gonna talk to the church or something... I just can't do death counseling...even though I am a counselor.. that's not my area... and it truly is all I can do to stay on my feet working a zillion hours and coordinating his care both in-home and medically.... I can't let my wall down cuz... I'd never stop crying... so I need to stay strong...
hey we got a kickass Christmas tree up... takes up half of our small living room and he's just like a little kid looking at that...
Posted 11/29/2009 5:02 AM (GMT 0)

Sandi, so glad you had a good Thanksgiving and birthday!  And that Mike is enjoying the tree.  I love having a big tree, but stopped doing it 2 yrs. ago...just physically impossible for me now.

Someone in that x-ray dept. is full of it, as an MRI with the proper contrast medium can take pictures of any body part/organ/etc.

Even if grief counseling were your specialty, you are too close to the situation.  Mike needs someone who can be caring and compassionate and listen to him, but not break down.  That would be expecting too much of you.

I hope all this works out for you both.

Hugs,

Connie

Posted 11/29/2009 8:11 PM (GMT 0)

They are certainly not going to bend over backwards for him if they know he is still drinking.  They consider it a waste of their time.  He DOES know that he cannot drink even one can a month once he starts AA or counseling, doesn't he?  He is going to have to give it up, if he expects to receive a transplant...although the idea is "one day at a time" because it's too difficult for an alcoholic, especially a practicing one, to accept the idea of never drinking again--and because none of us can guarantee we will NEVER drink again.  I went to AA with the notion that everyone who goes remains sober ever after.  Boy, did I learn differently.  And I also learned that some of my "heroes" with 10, 20, and more years of sobriety were not immune to a "slip."  But those who are sincere know they must commit to sobriety "one day at a time," and there can't be any underlying thoughts of "just one" or "nobody will know," etc.  AA or counseling will never work if an alcoholic is still drinking...or smoking weed, or whatever.  No mind-altering substances at all.

Hugs,

Connie

Posted Yesterday 4:44 AM (GMT 0)
I don't agree .... I believe those who choose the AA way... that's great... but there are other programs... mostly not advertised or as well-attended as AA and there are other ways.... and some people quit cold turkey...
Mike knows his death sentence.... I was not aware of the AA requirement for transplant... don't think he would attend.... I guess all of this is in his lap... and I really am not in charge of his decision to drink ... nor am I going to spend the rest of his time here ... harping on his total abstinence.... I insisted the binging quit... and that has... I have strongly suggested no drinking, I give gentle reminders that one drink can throw his liver into shut down.... but I won't harp on him... and I have told him everything you have said... I am fully aware... of the AA position... but AA does not help those who won't quit... and I don't believe those people should be thrown away
... and it doesn't mean that there are not treatments that he could have... althoug the reality of them being life sustaining compared to a transplant are slim to none... but I won't give up on him... he has the information.. it is now in his lap... I personally, as a counselor have doubted the effectiveness of any treatment that was court ordered... and here it's like putting a gun to his head and saying go to AA or u die.... if Mike indeed was sober on his own for 6 months... I would... myself challenge the requirement of going to AA... as the sole means of determining ones sobriety.. however that is not the case and I am not a liar... Mike is in charge of his decisionmaking... not me...
Posted Yesterday 4:51 AM (GMT 0)
I am not anti AA I am pro alternative abstinence programs.. Pro Choice... it's like it's taboo to say "he's drinking"... well, he is... and I deal with it that way... we are well aware of AA and transplant and his death sentence... a person just needs to be able to say.. that .... AA is not the route he has chosen... and never will be...
Posted Yesterday 5:07 AM (GMT 0)
Hey, I'm sorry... I just wanted to talk about his biopsy... and the rest is already known.... don't mean to be down on AA... he just isn't going... and he's not binging... he's sober 99 per cent of the time... he had one can of beer on Thanksgiving... and no I do not buy it for him... I'm sorry didin't mean to be offensive... but my focus is on this biopsy right now... transplant is not in the picture for us...
Posted Yesterday 5:10 AM (GMT 0)
Amee I dont think the Medical people are throwing someone away when they make AA a requirement to be listed. They are using a standard guidline for everyone. My husband had been sober for over 10 years but he still had to meet some guidlines to be listed. We understood that there are more people waiting for a life saving organ than whats available so these guidlines are to make all attempts possible that the recipient will take the care needed to live the second chance they have been given. My husband was not a strong believer in AA so he went to one on one councelling instead. You feel like your running a marathon just to stay in the race and the finish line is not the transplant its the halfway point, you still have to run the marathon of life...... to its fullest. The transplant community of doctors are your coaches and they want you to win, you cant win if you without rules. Sorry if you dont agree but we fought a good hard, clean and sober battle. I have lost a parent, my first husband and now Doug due to alcohol. Doug even as a recovering alcoholic understood why things are done they way they are.

Sue

Posted Yesterday 5:30 AM (GMT 0)
I really don't care to discuss AA anymore... they need to expand their guidelines... AA is not the only way to be sober... and this really doesn't apply to my situation... thank you but I really don't want to discuss this... a person should be able to say he's drinking a can of beer on Thanksgiving ...
sobriety should be the criteria for a transplant ... absolutely... I agree... . absulutely... read what I said... there should be alternative paths... not solely AA... not everyone who is sober got there through AA... and that's all I want to say anymore on the subject...
and as I said this does not apply to Mike.. he has not made that choice... although he has been 99 per cent sober... and controlling his drinking in my mind is better than binges... and maybe he'll quit... he knows my position... but I will not harp on him...
the reality is that there are many people dealing with a spouse or loved one who will continute to drink...
I was not suggesting AA was throwing these people out...
it's the assumption that every person should rush to AA or die... so those left outside the AA bunker ...
they still have a need for other types of treatments and possibly other ways to get sober ... meanwhile the clock ticks down...
it seems selfish, moronic, and other things to me that he makes this choice... but again I will not harp on him... he is in charge of his choice to drink, I have taken my stand on the issue for abstinence... but I will not treat him with disrespect for that choice.... I will be here wherever this path takes us....
Posted Yesterday 5:39 PM (GMT 0)
You either drink or you don't drink. There is no such thing as 99% sober. If my insurance company or Hospital ask me to do something to qualify for a Liver transplant I did it with a smile on my yellow face. My will to live was stronger than my will to do things my way. The thought of asking them to change the process to suit me never entered my mind, they hold all the cards.
I was transplanted on July 16 2009. Good luck with the path you have chosen I truly hope it works for you and your partner.
Michael
Posted Yesterday 6:11 PM (GMT 0)

Hi, Logan!  Congratulations on your transplant!  And welcome to the forum.  I hope you will come back often, as we need members who have actually gone through transplant.

Sandi, I know that AA isn't the only way, but I do think it's the best way.  However, if someone isn't willing to go and at least try it, you cannot force them.  Nor do you have any power over whether Mike drinks or not.  I am fully aware of that and glad that you are, also.  Many transplant centers do offer counseling as an alternative to AA.  Since a transplant is not an option for Mike, then there's no point in discussing either one, except for others who may be reading this.  We have many "lurkers" who read posts and never do post, or maybe are encouraged to post by something they have read.  So answers many times are not directed just to you...or even directly to you...but are for general info.  However, people suffering with liver disease, who are doing everything required of them (including total abstinence), do get a little riled up by someone who apparently isn't as motivated to save his life.

You are handling the situation the best way you can, and that is all you can really do.

Hugs,

Connie

Posted Today 4:38 AM (GMT 0)
The point was completely lost.... we are dealing with a biopsy... not AA and everything else... there's a lot of rush to judgement.... Mike isn't a candidate for many reasons ... one including PTSD and Chronic Depression... dealing with these issues 99 % sober is extremely overwhelming to anyone.... if he were to have a transplant... I would donate it... so he wouldn't be wasting anyone else's place on the "list"... that's assuming we share more than the same blood type... everyone should be welcome to share their pain and grief as they pass through this journey... drinkers and nondrinkers...and there are lurkers like Mike out there too ... who won't say what I said.... for fear of the same result... enough said... I won't be back...
Posted Today 5:40 AM (GMT 0)

Sandi, I'm so sorry you feel that way.  I hope you change your mind.  I know you are dealing with his upcoming biopsy, to which I posted that you should ask about an MRI with Gadolinium, which will show if the mass is cancerous.  An AFT (alpha fetoprotein) level can also be an indicator of cancer.

I will still pray that the biopsy is negative for cancer.

Hugs,

Connie


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