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Posted 1/22/2008 3:48 AM (GMT 0)
Hello everyone.  Well, we returned from Vanderbilt on Thurs evening.  I had to take my husband in to be drained on Fri because he felt so uncomfortable.  They only got 6 and1/2 liters which isn't alot for him.  He said he felt they didn't get it all.  I don't think they did either because his stomach usually gets flat after they drain him and it wasn't this time.  He got someone new in the ultrasound dept and he said he could feel them poke something inside.  Isn't that scarey!!!  Also this is Mon evening and he has gained 5 lbs since they drained him on Friday!  God when will this ever end.  One person at Vanderbilt won't let him on the list until he takes a 6 to 8 week course.  I wish now we would have done more research and gone to a Mayo clinic by the way you are all talking.  His MELD score is in the mid 20's.  I am just so thankful he is eating good.  That is this week!!!  Does anyone know if we changed hospitals mid stream if it would hurt his chances?  Appreciate any info you all can give me.

JoAnn

Posted 1/22/2008 4:07 AM (GMT 0)

JoAnn, I'm so sorry your husband is having to go through so much.  You know, Vanderbilt is supposed to be an excellent hospital--I believe in the Top 10, if not the Top 5.  No matter how excellent a hospital may be, you will occasionally get a technician or other staffer who is new.  I feel I've just been extremely lucky at Mayo...but there was one time when a nurse tried to get a deep vein in me for IV using computer assistance, and she had me in tears from her jabbing and poking around--and she didn't get it.  Now I ask for the radiologist who did the chemoembolization and TheraSphere, when I'm in that area.  That man does it painlessly.  He's a genius--truly. 

Anyway, I don't know whether Mayo requires a course that long or not.  I do know they have a transplant information course, as I've been in the waiting room when someone comes out and calls names for the transplant course (I'm seen in the Transplant Center, even though I didn't have one.)  I don't know how long it is, how many sessions or anything.

Also, when I went to Mayo I took all my test results from Shands--all the scans, blood work, everything.  However, they repeated it all plus some.  In fact, they did it several times, and before and after surgery.  When I go in next month for scans and bloodwork, etc., I know it will be spread over several days.  And this is follow-up.

So I don't know that you'd be better off at this point changing care.  Ultimately, the decision is up to you and your husband.  Is there a social worker or patient advocate there that you could talk with?  Most hospitals have them.

BTW, are "water pills" a no-no for transplant candidates?  It took them a long while, but they finally did prescribe Lasix and Aldactone for me, which I still take on a daily basis.  Without it, I get ascites and edema in my legs and feet.

Good luck and let us know what you decide to do!

Hugs,

Connie

Posted 1/22/2008 4:10 AM (GMT 0)
Hello JoAnn, I am not sure if would hurt your changes or not. But if his meld score is in the mid 20's I would at least look into it. Maybe Shelly will have the answer for sure.
By this stage of the game your husband probably knows better than some of the doctors about what is going on with him and you may know better than them too. You and your husband are dealing with it everyday so trust your gut and your husbands feelings.
When my husband finally got listed they sent us some paper work about him being able to get listed with another hospital also (Duel listing). But I really don't remember everything about it. But I think that if your husband's meld score is already in the mid twenties that by the time he takes that 6-8 weeks course he may be too sick to be listed.
It really can not hurt to check into another hospital. Go on their website and I am pretty sure that they have someone for you to email with your questions. Different hospitals may have different rules for transplantation. Maybe at Mayo they won't require that 6-8 week class.
Be sure to get all his latest test results from the lab and all copies of the tests he did for his evaluation at his current hospital.
JoAnn time is your enemy now. I would get started ASAP in checking out another hospital.

Good luck.........My thoughts and prayers will be with you both.
Posted 1/23/2008 4:07 AM (GMT 0)
JoAnn, Just wanted you to know that you and your husband are still in my thoughts and prayers.
Posted 1/23/2008 4:57 AM (GMT 0)

Thank you all so much.  What I have found out so far is distance can be a problem.  Someone that works for my husband his wife is a head hunter for hospitals that need Drs.  It seems that part of the problem would be getting to the hospital if its across the US.  If we got a call from Calif.  that they had a liver.  We would have to get there soon and we don't have access to a private Jet if you know what I mean.  I'm just so tired.  No sleep last night.  He's better today but has had some vomiting!  I called Vanderbilt and they told me to take him off of solid foods for a while and make sure he can keep his meds down and water.  That did work.  I went to the store and we made him some home made soup low sodium!!!  He loved it and is feeling much better today.  He didn't gain any wait at all today so maybe the fluid thing is under control.  I actually got an e-mail from the Physicologist today saying that we are in her prayers.  Can you believe that!!!   I thanked her but I just don't know how to take that.  I didn't even tell Jerry because I know he's getting scared!!! OH my God how do you all keep your sanity through all of this.  To top things off my daughter sold her house finally and will be moving to Seattle with three of the grand babies.  I am so sad she is my rock.  I will miss her so much and the kids.  They fill our home with so much joy I can't believe they are leaving.  I guess we are lucky that we have 8 more!!!  Some of you only have one or two we just got our 11th the day after Christmas!!!  It is so fun.  They just love their Pap.  All I need is a good nights sleep and I will be better tomorrow.  As Pink Grama says charge your batteries.   Thank you all.

JoAnn

Posted 1/24/2008 1:19 AM (GMT 0)
JoAnn, I am no expert on any issue believe me but I wanted to put my 2 cents worth in here. First we can address his being drained. Some techs are reluctant to drain off too much fluid. I was told once (at work) that draining too much can put the patient into shock. I never checked that out but I remember it well. Next let's address the issue of changing hospitals. My understanding is that you have to have a Dr at the new hospital accept your husbands case before you caould do anything, then you have to arrange an appointment. Of course they would need ALL his records and labs, etc. Then they would repeat all the labs and testing, then his case would have to be reviewed by the team. Now, don't be discouraged by all that. Call first and find out what you would have to do and in the order that it would have to be done. Always write down the name and department of the person you speak to and keep it in a folder with the time and date that you made the call. There may be a more expedient way to do everything and they will tell you if there is. If they don't tell you then ask. NEVER be afraid to ask anything..........make a list of questions and leave a space on the paper to write their answers. It is what I have always suggested to my own patients. There is no room for error or forgetfulness. When you ask the question write the answer and repeat the answer to them. Then you'll know you didn't misunderstand. Also, if it is a yes or no answer you are looking for then write Y / N on your papre. It saves time. You can just circle the answer.
When my mom was sick I made a list of questions for each week. I made a folder for my dad so he could just fill in the blanks. It saved time and also they could review it later and also compare data from visit to visit. If there were new symptoms she was displaying I just added them to the list as they occured so they remembered to tell the DR. I will help you anyway that I can if you find that you are interested in doing something like that. In fact I would encorage anyone with a chronic illness to do so. Hope this helped a little.

Shelly
Posted 1/24/2008 3:53 AM (GMT 0)

Shelly  Thank you so much.  We did talk to the Dr today and he took labs.   This is his local GI Dr. who has been wonderful.  He told us there seems to be a fine line with Jerry.  The amount of meds he was taking that kept the fluid off worked good but he eventually got dehydrated.  So Vanderbilt lowered the dose and now the fluids are coming back but now as  bad as they were so we are going to stay with that for now.  Jerry's appetite is good now.  I will find out tomorrow how his labs were.  We also have an evaluation for this four week class they want him to take.  Hopefully we can get it shortened some.  The Dr. told us today exactly what you just said about the draining.  The usual ultra sound tech that he has and is used to was gone last week so he had a new one.  I think thats why he had a problem with that.  Jerry did vomit yesterday and I called Vanderbilt immediately.  They are great about calling me back.  That is a live Dr. there.  The nurse told me to hold solids for a few hours and see how he does.  It work fine.  We were just getting ready to go to bed and it happened again tonight.  We think its the tangerines he's eating like crazy lately.  He seems to crave them.  Jerry thinks they have too much acid for his stomach.  So we will see.  Hopefully he will fell good enough for the evaluation tomorrow.  Please pray for him.  He's so sick now its just breaking my heart.  To top it off there are problems with our business because he's not been there to take care of things so his secretary and I are trying to straighten things out there.  Its our livelyhood so I have to try and help and keep some of the pressure off of him.  Thank you for your advise and I will keep you posted. 

JoAnn

Posted 1/24/2008 4:48 AM (GMT 0)
JoAnn, My heart breaks for you and Jerry. I will continue to pray for you both. I know that things seem so hard right now, but don't give up.

11 Grandchildren!!! That is wonderful! I have one seven month old grandson, and he fills my life with so much joy. I will be getting a second grandchild in September. I am so excited. I look forward to many more.
Posted 1/24/2008 11:20 PM (GMT 0)

JoAnn, I have thought a great deal about you and Jerry this week. I pray that all is well right now. He is right, the acid in the tangerines may be making him nauseated. He may need Vit C so he is craving it in the fruit. Ask your Dr about OTC Vit C. It may help with his cravings. Also, sometimes peppermint can help with mild nausea. If he likes tea he could drink the peppermint tea when he first starts to feel a little queezy. It is an old remedy that works fairly well with pregnant women too. There are peppermint candies he could suck on too unless he's diabetic. Just a thought. You are much stronger than you think you are honey. It's Ok to cry, feel down, or whatever but you have to let it out then pick yourself up and keep going. Make a list of priorities and tackle one thing at a time. You'd be surprised how good you will feel when you start checking things off the list. I know that the list will continue to grow but as you complete tasks the list grows shorter. If you are able to and have some kind of support at home (kids, friends, family, etc) try delegating some of your tasks. It will help you to not feel overwhelmed. You don't have to do it all so don't.....Kisses and hugs

 Shelly

Posted 1/25/2008 4:04 AM (GMT 0)
Thank you all for your input.  I feel like you are all my new wonderful friends and I appreciate every bit information I can get.  Now, for an update!  We had a very eventful day.  We had an evaluation with a mental heath facility here in Knoxville.   This is the facility recommended by the Physiciatrist at Vanderbilt.   As it turned out its an outpatient program for addicts (alochol and drugs).  Its 5 days a week 4 to 5 hrs a day.  She said Jerry would never be accepted into this program because  he doesn't fit their criteria.  He hasn't had a drink in almost a year!!!  Also there is a posibility alochol isn't his entire problem.  Due to a bad back he has taken a lot of  ibeprofin and tylenol for a long time.  To make a long story short they turned him down.  We got back home I e-mail the Phy. Karen at Vanderbilt to tell her.  In the mean time I got a call from Matt the NP for the liver Dr.  Telling me the committee met yesterday afternoon (we knew they were) and determined that Jerry is a good canidate for a transplant.  All his test went really well and he's very healthy other then his liver.  BUT because of Karen recommentation they will not list Jerry until he finishes the program.  The one he was turned down for.  I explained to him what happened and he is going to check with Karen. He also told me Jerry's MELD score is a 16 even though the surgeon thought it was at least a 25.  Back to that problem that Jerry is much worse then his scores.  There is nothing they can do about that.  So now we wait to see if Karen can come up with somthing else.  Tomorrow Jerry has an appointment with his other counselor.  Man oh Man.  I told Matt if we have to come to Vanderbilt for the couseling we will do it.  I also told my husband if we have to go to China for coundeling we will do it!!!  Now all we have to do is try and keep him healthy.  We have very good friends that think he looks so bad.  have any of you come across that.  Jerry can barely walk.  I was scared to death he was going to vomit in the counselors office today.  He's had two nasia pills today.  That messes with his appititate and he needs to eat.  I've gotten really good at making fresh fruit smoothies and he loves them.  I put a scoop of protein in them also.  As long as his amonia level is not high.  I got the results from his blood work yesterday and it was all good.  So all keep your fingers crossed and a prayer would also help.  Thank you all for listening.    JoAnn

Posted 1/25/2008 7:51 AM (GMT 0)
JoAnn, there's only time for a quick reply, but I will certainly pray that your husband will continue to do well and make it to his transplant date.  AFTER I'd had the removal of the rt. lobe of my liver and started to get better, a friend told me I looked SO much better--that I had looked really bad previously!  Other than that, nobody has mentioned anything like that.  I certainly didn't know I looked THAT bad.  eyes

Hugs,

Connie

Posted 1/25/2008 11:25 PM (GMT 0)
JoAnn, I will continue to pray that Jerry stays well enough for a transplant and receives it soon.
Posted 1/26/2008 12:18 AM (GMT 0)

Thank you all for your prayers.  I just know they must be helping.  Jerry didn't have any vomiting at all today.  He had an appt with the couselor he's been seeing today.  He told us ethically he really shouldn't be seeing Jerry any more because he doesn't feel that Jerry needs it.  But the head physic at Vanderbilt is saying he does need it.  But not with this counselor.  Scott (the counselor we saw today)  is trying to work with Vanderbilt to find Jerry the program she thinks he needs.  Scott feels that this Physic at Vanderbilt doesn't really know Jerry.  He's not at all like other drinkers.  He had no withdrawal, or any other symptoms that Alcoholics have.  Anyway they will not put him on the list until he finishes this course.  Scott got on his computer to find a program for Jerry that would make her happy and there is none in the state of Tennessee!!!  So here we go again.  Thanks again for your prayers and if there is anyone out there that might understand what Jerry needs and where we can find it please let me know.   Thank you all.

JoAnn

Posted 1/27/2008 4:35 AM (GMT 0)
 

Hi JoAnn,

I use to come in this forum a year or so ago. My husband has Hep C and cirrhosis.

He is End Stage with a Meld Score of 15. He use to go to Vandy in Nashville. We live in

Nashville. We had a bad experience and now my Dh goes to Methodist in Memphis.

We are so Happy to be there. Our Dr. is Dr. Flenkenstien. She is a Heptologist and very well educated!! She has done more for my husband than anyone at Vandy!!

I am so outraged at how Vandy is doing your husband! If you went to Methodist they would put him on the list asap! My husband hasn't had a drink in 23 years and they turned him down for almost the same reason!! That is rubbish I tell you.

Please get a hold of me..

JoAnn, there shouldn't be a problem putting your husband on the list! But that is Vandy for ya...it might be time to move on...We had a same like experience!!

If You would like please contact me I think I can be of some help to ya. My email should be under my nick.

Hi Pink GrandMa and Connie..I don't come on much. Was bored and was looking around and saw JoAnn's post and just had to post to her. Espeically since we had such a bad experience at Vanderbuilt!

Hugs and Blessings to All!

Donajean :-)

ps..Has anyone heard from Barbara P...? 

Edited to correct some spelling...

Post Edited (donajean) : 1/26/2008 9:57:24 PM (GMT-7)

Posted 1/27/2008 12:49 PM (GMT 0)
First of all I want to tell JoAnn read Donajean's post below mine!

Donajean so glad to hear from you. yeah You couldn't have gotten bored at a better time. I hope you can help JoAnn.

How are you and your husband? Hope you both are doing well.

Barbara P has not been logged on since last July. But her email is in her profile. I miss her too.

Don't be a stranger. We need you here. Thoughts and prayers.
Posted 1/28/2008 4:47 AM (GMT 0)
Hey Donnajean.  I just read your post.  I will get in touch with you.  The Dr. my husband sees at Vanderbilt is Dr. Porakayo and the therapist that is giving him such a bad time is Karen Starr.  I'm curious if you saw the same Dr's .  I actually like Dr. Porakayo and so doesn Jerry but this is not a personality contest.  This is Jerry's life!!!  As far as Karen Starr I think she has an agenda.  She told us her X husband was an Alcoholic!!!  Ding Ding.  I ready think something is up with her.  All the counselors we have talked to here do agree!!!  Anyway just send me your number and I will call you.  Your not that far for us!!!.  Thank you so much.    JoAnn

Posted 1/28/2008 6:08 PM (GMT 0)

Hi Pink GrandMa!!

Hi JoAnn,

I have been having pc problems, Big Buddie Time!!!I did get your email late last night but when I replyed my pc shut down..hmm having alot of trouble for some reason. But the Lord only knows at this point. Would still love to speak to ya so I will keep trying...

I have unlimited long distance phone calling...

Ok back to your problem. I really hate what this woman is doing to you guys! NOT GOOD!

No we didn't see your Dr. We saw another one and boy he was something else. My husband has been drug and alcohol free for 23 years! He takes a few darvocets...our prim care Dr. said to take a couple of years ago and they said you can't come here until  you get off the drugs. We are like he is not a drug addict...DUH!!!Then they said loose 70 pounds or so then stop smoking. Well my husband got sick and they still refused to see him!! NOT GOOD! Any way he got ok..But the good thing is he has stopped smoking! He lost 50 pounds and still doesn't take drugs..DUH...He took the darvacest cause he was in bad pain with joints and muscle and we had no idea that he couldn't take those. So the Dr. PRICK! from Vandy just assumed that my husband was a drug addict. I guess the long hair and he is a Harley Guy! don't know..Any way it was NOT GOOD to say the least! Our primary care Dr. loves my husband and she said he would be a great candiate for a new liver and she has it documented that he is not a drug addict nor an alcoholic..Our new Dr. in memphis is great, she said my husband would be a GReat canidate for a new liver!! We are not the only ppl who do not agree with Vandy there have been others! This came from the Inc. Companies so we don't have to feel like the lone ranger.

I would not reccomend anyone to see the Dr. @ Vandy!! That is our opinion! After what we went through! I don't get. This is our husband's lives here!! Another thing I don't think they are Heptologist I think they are just GI"S I could be wrong. In any event I hope you can get help like ASAP. I don't usually post any where but when I saw your post I got OUTRAGED!!

Please email me again as I have lost your email. I had to do the recovery disk like 4 times.

wow pc's can be a pain in the behind me! But then again I will look on the bright side and remember all the times it has helped me :)!

Pink GrandMa I will get back to ya soon. Hugs to you Connie and all the rest . I will email (ma)

Barb. Teresa and I were thinking about her..We are on another group on the net. Nothing against you guys..we love ya all!

By the way Mark, Teresa's husband is still doing wonderful. JoAnn she has been my rock and I know she can help you too. We will all try to help ya!

ps. keep emailing so that I can get your email addy..........

Donna

Posted 1/29/2008 2:04 PM (GMT 0)
eyes  Hello everyone it's ggirl. It has been days since I have been on, but it sounds like everyone is hanging in there.  It was a rough weekend my husband decided to have one of his honesty breakdowns (that's what I call them) and tell me all his fears and some of what is really going on with him.  He told me that his shaking in the middle of the night is actually seizures, that he is vomitting almost every morining and shake like crazy when he goes into work in the morning.  He said he doesn't even know if he can quit drinking that he is really afraid of the DT's because they are so bad even after 2 days of sobriety.  He doesn't realize that I already knew he was getting pretty bad, but to have him tell me kind of hit hard.  He also told me that I had no idea what I was getting myself into with him coming home. I broke down and cried for 2 days, I guess mainly because I do know what I am in for when he comes home and that there is nothing I can do for him but love him; he isn't ready to get help and is still refusing to go to the doctors, pride can be such a horrible thing. Anyway, the kids are hanging in there my youngest got his blood work back and his liver enzymes remain elevated and his cholesterol is still high, now we are just waiting for a scheduled CT scan.  The doctors think I'm crazy but this is my son and after what I know my husbands going through I will not take any short cuts with my child or treat his NASH like it's no big deal.  Take care everyone and God Bless gina
Posted 1/29/2008 5:45 PM (GMT 0)

First of all, HI, DONNA!  So good to see you back here!  You've been missed. 

I have to say I am very surprised about the problems with Vanderbilt.  I know it is listed as one of the top hospitals in the country, but their transplant agenda seems to be all kinds of wrong!  It is that lack of respect and understanding that is entirely missing at Mayo, and why I love them so much.

Ggirl, your husband does not need to suffer like that.  If he would only go to a doctor, he could get something for the withdrawal and, if needed, Antabuse or a similar medication which is a deterrent to drinking.  You can suggest these to him, but of course it is up to him to actually seek the help.

Hugs,

Connie

Posted 1/29/2008 8:56 PM (GMT 0)
Hello Connie,

I know so well he doesn't have to suffer like this, he seems to think because he is 1300 miles away that it doesn't effect me or the boys but we know especially me since I talk to him at least 5 times a day.   He is so stubborn and wants me to think that he will be okay.  I told him we could go to the doctors that they have medicine he can take but he just keeps fighting me.  I know he will go when it gets bad enough it just scares me that it might be too late for all the help he needs.  I read all the replies and comments here on the forum and I can relate to most all of them that has to do with liver disease without my husband even being treated.  Well he will be home in about five weeks so I guess we will see how it plays out at least when he is home I can be there when he needs me and help him get the medical help he needs.  Thanks for your reply God Bless Gina

Posted 1/30/2008 2:10 AM (GMT 0)
Hello Gina, I am so sorry about your husband and son. You may not be able to do much for your husband as he seems pretty stubborn. My husband started getting siezures about 11 months before he died. They called them focal siezures as they only affected one of his hands. Eventually he had a small stroke. Now my husband had many doctors during that time and hadn't drank for 2 years when they started. With your husband still drinking and not under any doctor's care he's playing Russian roulette with his life.

I agree so heartedly with you about your son's care. Do what ever it takes to make the doctors take it seriously. Don't be afraid to step on toes or change doctors if need be.

Good luck and take care. Thoughts and prayers.
Posted 1/30/2008 1:58 PM (GMT 0)
Hello Pink Grandma,

I agree that he is playing Russian Roulette and it is so sad.  At first I just thought his nerves were messed up at night when he was sleeping, he would jerk so hard and shake it would wake me up. Even though we have only been able to see him every 2 months I can tell each time he is here it is just getting worse.  I am just dumbfounded at how much he can sleep and how tired he is all the time.  To give an example of how stubborn he is.... He has had this cold/sinus infection since Thanksgiving, it has gotten worse and gone down into his chest he was off work the last 2 days because of it and still will not go to the doctors knowing that 4 co-workers and part of their families are in the hospital because of this flu.  He just simply can not stand doctors.  It will either take a miracle or him just simply getting so bad he has no choice before I will get him there.  What can you do though, as for my son believe me his health and life will not be messed with by doctors I'm a pretty stubborn woman myself when it comes to my 3 boys so "Doctors Be Ware" Ha-Ha!!! Have a great day and God Bless gina

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