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Posted 10/31/2006 8:25 PM (GMT 0)
Happy Halloween skull

Hope everyone is doing well under your circumstances.  Don't get scared with all the ghosts and goblins out there tonight!!  Be safe!

Just wanted to give you all an update on my husband Robert and ask for prayers.  As you may or may not remember, Robert was diagnosed with end stage liver disease with cirrhosis due to alcoholism in December of 2005.  After being on several medications and continuing to have medical procedures done for bleeding varices, Robert is finally having his liver transplant evaluation at Mayo Clinic in Arizona next week (11/06/06-11/10/06).  We both are a bit nervous about the whole thing but hopefully any doubts in our mind that we have had about his medical condition will be cleared up and we can find out if he is a candidate for transplant.  His condition now is doing really well.  He looks really good, eats well, has been sober for almost 11 months now, still has good and bad days but other than that, he is doing great. His last hospital stay was back in March of 06' and has had no stays since, woohoo on that!

On this note, anyone that has gone through a transplant evaluation have any comments or thoughts on how he should prepare for this evaluation? What happens, what do the doc's do?

Thank you!

Posted 11/1/2006 7:12 AM (GMT 0)
Hi Shel,

Hope you had a Happy Halloween too! Mark's evaluation took about a month to complete, we made trips back and forth and in between hospitalizations. The first part will be meeting the Transplant Team, this includes the surgeon, hepatologist, transplant coordinator, social worker, financial coordinator. This part took most of the day. The testing they did on Mark included a MRI, Echocardiogram, Stress Test, Endoscopy, colonoscopy, several blood test, chest x-ray. Mark was required to have Hep A & B vaccines, Flu shot, and Pneumonia vacine. We both met with the Transplant pyschologist, he evaluated us to see if we were mentally stable for the transplant. We also met with the anesthesiologist, he evaluated Mark also. They will require your husband to be cleared by a dentist. They will not list for transplant until you have 6 months of documentation of A.A. Once you meet the criteria and have done all the testing, the transplant coordinator present your case to the Transplant Committee, once they approve it it goes before Medicaid/Medicare/Insurance for approval. The approval process will take around a month to 6 weeks. I know I am probaly forgetting something...

Mark and I were nervous too, I guess it is the fear of the unknown. They will ask very personal questions, about alcohol and drug abuse, Mark was very uncomfortable with this but he opened up to them. The important thing is to be very honest with them. If you have not started the A.A. meetings or had rehab or counseling, just know it is required and honesty is the best policy. Be willing and ready to do what is necessary to meet the qualifications. I can't think of any thing else right now. It is a very time consuming, but will be worth it! Good Luck!!! I will keep you in my Prayers!

Teresa

Posted 11/1/2006 7:49 AM (GMT 0)
Shel,
I will be thinking of you and you husband,hope all the testing goes as smooth as possible for both of you. Good job answering her questions Teresa:) take care
Posted 11/1/2006 10:19 AM (GMT 0)
Hi Shel,
Hope it all goes well with the evaluation. Teresa must have put your mind at rest just a little with her information about Mark's evaluation.

Good luck. I'll be thinking of you both.
Marg
Posted 11/1/2006 7:04 PM (GMT 0)
Hi Teresa :-)
We had a great Halloween! We took our 7 year old daughter out and boy did she gets lots of candy! We probably have more than Wal-Mart does! Ha! Ha! Anyway...
Thanks for your response, that is a great help just having some sort of an idea of what will be taking place next week. Mayo Clinic did send some information on what the schedule will be like next week. There was pamphlets and stuff which I did read through but still I had to ask!! Robert is aware of the the 6 month documented attendance of A.A. Meetings. Unfortunatley, he has shown no interest to attend at this point. Maybe once he actually goes through the evaluation and depending on what they tell him, he'll change his mind. To be quite honest, I don't really know why he doesn't want to attend these meetings. I realize that if he really wants this, he can be the only one that makes the effort! I have done most of everything I can and he has to show interest of his own. I do encourage him to attend though!! I'll keep the forum informed on the evaluation. Thanks for the good luck and keeping us in prayer through this.

Hi Trish: Thank you for your comments.

Hi Marg: Thank you for your comments.

Shel
Posted 11/2/2006 10:31 AM (GMT 0)
Shel, Mayo is extremely thorough.  It can be exhausting with all the testing and meetings, but you and Robert will know you are in good hands.  I didn't qualify for a transplant, as my liver cancer had metastasized to the inferior vena cava, and I had good liver function.  However, I went through 2 different treatments which have nearly completely killed the cancer, including the part that had metastasized.  The next step will probably be surgery to remove the entire right lobe of the liver.  However, in the meanwhile, it was felt that I was stable enough to have a much-needed reconstruction of my left hip joint.  This was done by a Mayo ortho surgeon on 09/26.  I knew immediately that it was a good surgery.  I have far less pain than I had before surgery, and it just feels as though everything is where it is supposed to be.  I'm still on crutches, with no weight bearing on the left--will have follow-up x-rays and visit with the surgeon next week.  Mayo is absolutely tops, and I hope Robert will agree to everything they ask of him.  They definitely know what they are doing.  I have been a sober member of AA for 20 years.  If he has any questions or wants to discuss his reticence about going to meetings, I would be glad to talk with him in e-mail, or through you.  Usually, it's a pride thing of feeling one can do it on his/her own, or it's denial that there is a problem.

Just let Robert know that if 6 mos. of AA is necessary for transplant, then he needs to comply.  It is not necessary for him to speak if he doesn't want to, even if called upon in a meeting.  He will just need to go and sit for an hour and then get a paper signed by a chairperson--documentation that he attended.  Of course, he will be expected to remain sober during that time.  He can learn a lot and get some good support, if he will keep an open mind.

I wish you both the very best of luck.  Mayo will do everything in their power to help Robert, but he must also do what is required of him.

Hugs,

Connie

Posted 11/2/2006 6:41 PM (GMT 0)
Thank you Connie for your support. I'm glad to hear that Robert is going to a great place for his evaluation. I have heard nothing but good things about Mayo and want nothing but the best for my husband. I'll do whatever it takes, I just hope he has the same thought if it comes down to needing a transplant. I am so glad to hear that you are doing well with your surgery. I do remember reading/responding to you having surgery on your hip when you posted it on the forum. Robert tells me he had no desire to go back to drinking which is a good thing. I realize that it is a day by day situation. He knows what he has been through and what the family has been through and he says he doesn't want to go through that. He says it's hard sometimes but he deals with it in his own way I guess.

Thanks for luck and if we need to get in touch with you regarding AA, I'll let you know. I'll keep the forum informed on what the results are.
Posted 11/3/2006 11:50 AM (GMT 0)
shel,
I totally understand about AA,,my hubby has been sober for 15 mths now,,,,but Im not sure he would attend AA meetings,,,,I have even mentioned this ,,,told him he may need a transplant some day and it would be good to attend the meetings,and it would be helpful in helping him deal with soberiety,,he doesnt want to drink again either,but was um,taught by his father to drink(actually given alcohol)at the age of 7,,,and thats a hard habit to break,,,,he isnt himself anymore,,,,,taking the alcohol away,he now doesnt know how to socialize or deal with life ,,,but its easier for me to see then him,,,,,good luck at Mayo and will be watching for your post to update us,,,,,:hugs: take care of yourself during this testing too,,,,ya gotta keep your strength up for both of you.
Posted 11/3/2006 6:32 PM (GMT 0)
Thank you Trish for your comments. Yes, I would say starting to drink at the age of 7 would be a very difficult addiction to break. Robert starting drinking at around 14/15 years old and actually lost his first marriage over it. I knew he had a problem when I married him, but I guess I just chose to deal with it the best way that I could. I did consider divorce but I just couldn't. He is a wonderful person and never mistreated me or anything, he just had to have that beer in his hand at all times. I guess god had me stick around for a reason because I really was at my wits end with his drinking and didn't know what to do anymore! My husband is 9 years my senior and I guess god had a plan for us and that's why we're together. We're both really nervous about this whole evaluation so thanks for the "good luck and hugs"! We sure need it!
Posted 11/3/2006 7:52 PM (GMT 0)
My husband is also 9 yrs older then me,how strange is that? I was the same way with the drinking,,,,not sure which way to go with him. I,too,am glad i stuck around,though sometimes its still hard to deal with him,its not nearly as bad as the drinking days,,take care
Posted 11/3/2006 9:01 PM (GMT 0)

Just read your post, it is so strange you mentioned the age difference, Mark is 9 years older than me too! Shel, Mark actually told his doctors he didn't think he needed A.A., but he complied with it to qualify for the transplant. He doesn't mind going to them now, he thinks he is a good example as to why one should not drink!! His drinking just about drove me crazy too!! Just try to relax and be who you are, you will do just fine with the evaluation! I know it is easier said than done, I remember how nervous we were. I will be watching for your updates.

Teresa

Posted 11/3/2006 9:48 PM (GMT 0)
You ladies are sooo cool, thanks for all your wonderful support. I really do appeciate it! It's nice knowing that I have a place where I can come to for comfort and support and just talking about the whole situation in general. I feel better already! That's is so coincidental that we have husbands that are 9 years older than us! What a trip! I hope that one day I can get Robert to attend these meetings even if for some reason he is not a transplant candidate. I won't give up on trying! Anyway...thanks again for your support and I'll try to update in Arizona if I have computer access, if not, I'll update when I'm back at work the following week. Take care everyone and thanks for the hugs, thoughts, luck, and prayers!!
Posted 11/3/2006 10:16 PM (GMT 0)
..."he isnt himself anymore,,,,,taking the alcohol away,he now doesnt know how to socialize or deal with life..."

This is why AA is necessary. It's not enough to "put the plug in the jug." One must also learn to "live life on life's terms" without alcohol, and to get to the underlying causes of drinking alcoholically. It's also why there is resistence to AA: The alcoholic wonders who he/she will become without the booze. It's not a matter of "breaking the habit," but replacing it with other things...positive things.

However, it does no good to nag or push a person--it will only cause resentment and more resistence.

All the best of luck with the transplant evaluation, Shel! Come back and let us know how it went.

Hugs,
Connie
Posted 11/4/2006 4:25 AM (GMT 0)
your exactly right connie,,,most of the time i feel like im ricks counselor,,i have to push him to live life,and its NOT easy,but hes been slowly coming around,,,i just hope he continues..i want him to have a good quality of life,,,,along with longevity. (i want quality of life for myself too,and my children),,
shel,will be watching for your post:)
Posted 11/28/2006 7:46 PM (GMT 0)
I just want to say that this is a very helpful web site.

My mother was recently diagnosed with ESLD and also Hairy Cell Leukemia. She went into the hospital on Oct 23 with ascities and a cough. She did 5 days of chemo and came home on Nov. 3. She just went back into the hospital on Nov 26 with high ammonia levels. Now they turned power of attorney over to me and my sister. They also gave her infor on hospice. I have no idea what to think. The next day they said they wanted to transfer to a hospital on Oahu (she lives on the big island) that would evaluate her for a liver transplant. The resident doc at the hospital she is in said she is a good candidate, but suggested she would have a better chance if she were on the mainland. She was just approved for Medicaid and I understands that is different for every state. I am confused how we can transfer her and whether she really is a candidate for a liver transplant and will the hospital here in Colorado do that. Has anyone had to tranfer anyone for a transplant evaluation? Any info on this would be great. She is still hospitlized but downgraded out of ICU She is bedridden right now and on a catheter. They did a lactolose enma last night. She still seems a little confused. She is 62 years old and has hep C (from a blood transfusion she received in 1982 when she was first diagnosed with hairy cell leukemia. She does not drink or smoke and has lived a very healthy life style (vegetarian active) All this came about so suddenly and now she is critically ill. We are all very worried and concerned and I am trying to make the right decisions for her.

Any info would really help

Thank you
Posted 11/28/2006 8:05 PM (GMT 0)
Hi 82364, From what I'm gathering, looks like your wanting to transfer her from the big island to Colorado? is that correct? I know there is a hospital in Denver that performs transplant evaluations and the actual transplant. We're from New Mexico but decided to go with Mayo Clinic in Arizona. I know for a transfer, you will need to pay the cost of air ambulance yourself and it could be very costly as I understand it. Some insurances will cover air ambulance and some won't. Before you do any transfers, make sure she is stable enough for the transfer, especially since it's quite a distance. You will need to get in touch with folks at Denver and pre-arrange the evaluation at Denver. A lot of times, nurse coordinators from other hospitals can help you do this or insurances. Please take everything into consideration before transferring and make sure that's the place you feel comfortable for her to be at. My husband and I just came back from his transplant evaluation and it really takes a lot out of you. May be different for her since she is currently hospitalized.
As for Medicaid, you need to check with the facility that you're taking her to--to make sure it's accepted. Always double check everything especially when Medicaid is involved! I know it's little info but hope it helps in some way. Good luck and keep us posted.
Posted 11/28/2006 8:30 PM (GMT 0)
Well they said she could fly just a commercial airline if someone went with her on a direct flight. They would sigh a fit to fly form. As far as the hospital in Denver it is our only choice in Colorado. I am just not sure how to do all this. I can contact Medicaid and can figure out all that it is just getting new doctors to take her and taking over all of her care. It sounds like some people seem more mobile but since she was diagnosed she has been down alot. Sleeping all day.
Six weeks ago she was shopping and taking care of my sisters kids and now she can't get out of bed! I still can not believe how quickly this all happened. She never even knew she had hep c. Also what are her chances of getting a liver if she has hairy call leukemia? She did the chem and the effective rate of long term remission is excellent. But they can not do a bone marrow bioposy right now to prove she is in remission. I just do not want to give her any false hope as she is loosing her spirits. I am so glad to have found this site there is so much helpful information on it. It is so difficult being far away from her. My sister is doing all she can to care for her and her 7 children! Thanks for the info I really do appreciate it.
Posted 11/28/2006 11:26 PM (GMT 0)
welcome 823,
Id say the first thing to do is ask her present drs where to turn to next. Ask for a referral,then make the call to denver,,,someone will help you from there im sure. I hope they can help your mother and that you get a hold of the right people to guide you through this process. make sure to update us when you have time
Posted Yesterday 3:28 PM (GMT 0)
Thanks for your thoughts. Yesterday the decision was made to send her over to Oahu. They will evaluate her there. I feel that may be the best thing right now. If we get an okay from one transplant hospital, does that mean the hospital here would give her the same consideration? I am just wondering. I know her chances here are better because more livers are probably available. My concern bringing her right over here was having nothing in place for her no insurance no doctors really no plan. Her doc there never contacted me about this or gave any info how to handle it, only my sister said we had to do this and I kinda freaked-out and wanted some answers . So we will find out today if the hospital in Oahu will even take her.
Posted 3/25/2007 2:10 AM (GMT 0)
The facility in Denver is the University of Colorado Hospital. I have ESLD I got my evaluation done there in November of 2005 & I am currently on the transplant list there. My most recent MELD score was a 12 so there are lots of folks ahead of me on the waiting list.
Doug
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