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!
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.
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, 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
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.
Post Edited (donajean) : 1/26/2008 9:57:24 PM (GMT-7)
Hi Pink GrandMa!!
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..........
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.