Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 , University of Cincinnati gives exception points for cholangitis attacks also. You would DEFINITELY get transplanted with a MELD of 23...email me privately if you need further information. Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 ((())), You poor sweetie!! You have to go elsewhere. I know you have thought about this for a long time…but it is definitely time. They are not doing you any favors or even just the simple stuff. It is time to move on. I know Pittsburgh is good too, and any and all of you are welcome in my home although it is 3 hours. God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Oh , please, please go someplace else.You want to know that the people taking care of you generally care for you and will do anything to help you.I know that everything is for a reason. Maybe you are just meant to be at a different center.Lee Well, I'd like to tell you I've got good news to share, since my meeting on Tuesday, but that's just not the case. The meeting lasted for nearly 90 min. and didn't produce a thing. My hep. was clearly irritated that I was questioning his decision not to submit my MELD score to UNOS and promptly took the "I'm gonna win" stance. Unfortunately, he did. I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 , I just don’t understand their reasoning for not updating your MELD when it is 23. What is their reasoning? It just doesn’t make sense. I would think you could very easily take this to an attorney and get some quick results…but I agree get a new doctor and go to a new center. Pardon my language, but that is CRAP! Ooooo, I am so angry. Cleveland Clinic has a great team. Todd’s transplant surgeon (whom I adored since he saved my son’s life…twice) is now there after he followed Dr. Fung (who was Dr. Starzl’s right hand man for so long) who is now Chief of Surgery. You should be in great hands there. You will only be a couple of hours away, so I can come visit. J Sending you hugs and lots of prayers. Joanne (mom of Todd, 19, psc 12/01, Crohns 1/02, tx twice 12/03, recurrent psc 12/05 and living life to the fullest in 06) My hep. was clearly irritated that I was questioning his decision not to submit my MELD score to UNOS and promptly took the " I'm gonna win " stance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Dear , Just reading your post made me so angry. I'm sorry that you had to go through that awful meeting today, but maybe it will be for the best, since you're now looking for a new center. That is probably the best move you can make right now. Please keep us all posted on your progress. We're all rooting for you. Keep up your proactive stance and your wonderful sense of humor... Ricky liver meeting > Well, I'd like to tell you I've got good news to share, since my > meeting on Tuesday, but that's just not the case. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Mel, sounds like you were very clear and very direct and that panel needs to see humanity staring them in the eyes! We never got anywhere with exceptions either. I am so sorry for you. I would encourage you to write to the CEO of the hospital...what do you have to lose now? If nothing else, the voices force them to consider clarifying their policies and actions. Keep your spirits up. We are behind you all the way. Kate in Seattle Looking forward to hanging up the caregiver hat sometime soon! Deb LTX 1/19/06 and doing better every day She is so happy! One of these days she will sign on to this group and you will experience her spirit and kindness.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Mel You rock. Run do not walk away from those jerks. Marti CrazrNever04@... wrote: Well, I'd like to tell you I've got good news to share, since my meeting on Tuesday, but that's just not the case. The meeting lasted for nearly 90 min. and didn't produce a thing. My hep. was clearly irritated that I was questioning his decision not to submit my MELD score to UNOS and promptly took the "I'm gonna win" stance. Unfortunately, he did. I got the impression, as did my supporters, that the chief of surgery would accept it and submit it, but the hep wouldn't budge. The hep told me that we would just have to agree to disagree. There were a few times I got snippy and this would be one of them. I informed him that to agree to disagree means I get screwed! (Sorry, but I wasn't feeling particularly concerned with my language at that point.) When I asked him what he had to lose if they submitted my MELD score he had no answer. I made it clear that I have everything to gain, and they have nothing to lose! He tried playing that I've been a good doctor card, stating, "I've taken care of you for a long time..." I quickly pointed out to him that I have been a "good little patient, too". I have been compliant, understanding and accepting even at times when I'm not sure I should have been. The only stink I've made was when the financial coordinator was insisting that my insurance wouldn't pay for a test for my donor, despite the fact that my insurance company was saying they would. Dr. Chapman, all but admitted, that Denver's lack of private insurance was a large reason behind denying him as my donor. The problem there is, there is no policy that states a donor must have their own medical coverage. There is for kidney donors, but not for liver. So, they couldn't admit it (come right out and say that) because it goes against their policy. However, when Jay pointed out that Denver got insurance he said, "But how long did it take him?" The truth is he had the insurance coverage BEFORE they eliminated him, but they didn't know it - we hadn't gotten the policy number to them yet. Once they said he was eliminated, they couldn't take it back simply because he had insurance. That would be admitting that they were using lack of insurance against him, without policy to back them up. It's was a vicious cycle, then and now. Dr. Chapman said he gets the impression that I don't believe that we are working on the same side. I told him I had my doubts. said she had her doubts, and Jay said, point blank, I don't believe it! When he asked what we could do to come to an agreement, I shut my 3 ring binder and said, "Nothing. I don't think there's anything we can do. Now that I know that you all can do this anytime you like, when you don't like my lab results, I see that my life is in your hands and there's nothing I can do about it. I'm stuck." They knew beyond the shadow of a doubt that we were all angry and disgusted by the whole chain of events, and that our confidence in them is diminished, to say the least! I am going to call UNOS to find out if they have the right to look at my labs and refuse to update my MELD just because they don't like the values. If they do not have the right to do that, I will take this topic up again, and make a big stink! I reminded Chapman of the day he told me I shouldn't apologize for fighting to save my life, and I wasn't going to apologize now. If anyone apologizes over this it will be one or all of them. One other thing we addressed was Pam's, my coordinator, question, "How much coumadin did you have to take to get your INR a 4.5?" When this was brought up she did some back paddling and said she just asked what dose of coumadin I was on. I stuck to my guns on this one, like a pit bull. I called her on it and repeated EXACTLY what she said to me. backed me up on this explaining that I called her as soon as I got off the phone with Pam, crying and told her what Pam had said. I did not appreciate the insinuation and and I both made that clear. She said she didn't mean to sound as if she was acusing me, and admitted a poor choice of words but reminded us that she is only human. My guess is she won't be that human again. After the meeting my clan and I put our heads together and the overall bottom line is, we all feel like I need to seek listing and treatment elsewhere. I have about decided to go to Cleveland Clinic Foundation to be multi-listed. I spoke with them and they were very helpful and assured me that my MELD of 23 would have been submitted as it stood - they want their patients to be tx'd as soon as possible. She also believes they can get me exception points due to the continued cholangitis attacks (especially since I have had two hospital stays as a result). Attentively, we are looking at evaluation March 6-9. I will know more after they review my eval records from . They'll be faxed to them in just a few minutes. So for now, I sit tight and pray that I don't have to deal with very much. I am in no mood to tango with them! I'm tired and disappointed, not to mention not very trusting of them. Let's pray the docs and staff in Cleveland restore my faith in tx teams. (MO) What are the most popular cars? Find out at Yahoo! Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Mel, Often times, good people defer to their doctors judgments. In certain cases this is appropriate. But in yours, run like the wind. Without the confidence you need to have in your Hep, you'd be second guessing this man all the way to the recovery room-if he ever let you get that far. Good luck with Cleveland Clinic. Please let us know how it goes with them. I'm so glad you had your daughter and brother with you today. They should give you that extra bit of confidence to help you move on. All our love, Omaha Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Dear Kate, This is so great that Deb is doing so well. It would be so great if she was well enough to come to the conference so that we could meet her in person. I know this might be too soon to travel but I just think it would be neat. Lee > Mel, sounds like you were very clear and very direct and that panel > needs to see humanity staring them in the eyes! We never got anywhere > with exceptions either. I am so sorry for you. I would encourage you > to write to the CEO of the hospital...what do you have to lose now? > If nothing else, the voices force them to consider clarifying their > policies and actions. Keep your spirits up. We are behind you all the > way. > Kate in Seattle > Looking forward to hanging up the caregiver hat sometime soon! > Deb LTX 1/19/06 and doing better every day > She is so happy! One of these days she will sign on to this group and > you will experience her spirit and kindness.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Anne, Unfortunately, U of Cincinnati is not a provider for my insurance company and they won't pay for it. I'm hoping in the not-too-distant future my insurance changes and I'll have more options. I appreciate your help though. (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 , I have the option to go to Philly, but not Pitts. due to insurance restraints. But, make no bones about it, I will be going elsewhere. I faxed my evaluation results to Cleveland and Philly yesterday, so I hope to know something soon. Currently, I am leaning toward OH since the travel time is less and seems more feasible for me to arrive in the allotted time once I get the call. Thanks for being such a sweetheart, and so eager to help me. You have come through for me many times and I appreciate ALL you've done. (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Lee, I am certainly going elsewhere! Cleveland is my first choice at this point. I faxed my records yesterday and am waiting to hear back from them. If all goes well I'll be there in March for evaluation. (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Joanne, There reason being that my INR was 4.5 and he thought it was an inaccurate value. The problem is my INR has been going up steadily for months now. It was 1.1, 2.5, 3.3 and now 4.5. Granted, I am on coumadin, but my dosage has remained the same for the past 6 years. Since he didn't like the 4.5 he said it wasn't acurate because I'm on coumadin. The problem with that is that ALL of my MELD scores have been calculated while on coumadin and UNOS doesn't have a policy against it! I told them they need to set a standard and stick to it. Either make them all with, or all without coumadin, but don't change the rules in the middle of the game. He was a pompous ass and wouldn't budge. More than likely I will be listed at Cleveland, I'm just waiting for the call from them once they review my records. (Keep the prayers going in the meantime.) Thank you for the info regarding the tx team there. It helps to know who I'm dealing with, as you well know. BTW, I would love a visit from you. The only downfall I can see to that is you make me laugh, and laughing may not be my favorite pastime at that point! :0) I probably should pass this bit of news on to , as well! (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 , I'm sure you have said, but I have forgotten. Why are you on coumadin? Did you also have blood clots? For the past year Bill has been on coumadin to keep his INR between 2-3 because of the pulmonary embolus. We are looking at taking him off it this month but are a little nervous since no one is exactly sure what caused the clot in the first place although they think it was a complication of the UC. Now that he doesn't have his colon, we hope that this will not be a problem, but we are concerned that the liver could still cause clotting problems. Always something, Lee > Joanne, > There reason being that my INR was 4.5 and he thought it was an > inaccurate value. The problem is my INR has been going up steadily for > months now. It was 1.1, 2.5, 3.3 and now 4.5. Granted, I am on > coumadin, but my dosage has remained the same for the past 6 years. > Since he didn't like the 4.5 he said it wasn't acurate because I'm on > coumadin. The problem with that is that ALL of my MELD scores have > been > calculated while on coumadin and UNOS doesn't have a policy against > it! > I told them they need to set a standard and stick to it. Either make > them all with, or all without coumadin, but don't change the rules in > the middle of the game. He was a pompous ass and wouldn't budge. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 , Philly is closer yet. You are welcome here as is all your family. We don’t have much but we love to share what we do have. Something will go right soon. It has to. I am so glad you are ditching the current team. I really do not understand what is up there. What a bunch of self-righteous ignoramuses. I forgot the insurance list. Sorry. I just always think of Pittsburg because I actually know someone who was transplanted there (adult)…I knew him before Noah was diagnosed. He is doing wonderful! I think he had cirrhosis (nondrinker). Let me know what I can do. If you need anything and you are over my way let me know. Also, if there is anything remote that I can do…tell me…I will get on it. God Bless You, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Lee Did the dr ever talk about putting in a Greenfield filter? It is a device like an open umbrella that is placed in the superior vena cava to filter clots that may travel up from the abd and legs. I don't know if there would be contraindications with Bill's hx. Just a thought. MartiLee Bria wrote: ,I'm sure you have said, but I have forgotten. Why are you on coumadin?Did you also have blood clots?For the past year Bill has been on coumadin to keep his INR between 2-3 because of the pulmonary embolus. We are looking at taking him off it this month but are a little nervous since no one is exactly sure what caused the clot in the first place although they think it was a complication of the UC.Now that he doesn't have his colon, we hope that this will not be a problem, but we are concerned that the liver could still cause clotting problems.Always something,Lee> Joanne,> There reason being that my INR was 4.5 and he thought it was an> inaccurate value. The problem is my INR has been going up steadily for> months now. It was 1.1, 2.5, 3.3 and now 4.5. Granted, I am on> coumadin, but my dosage has remained the same for the past 6 years.> Since he didn't like the 4.5 he said it wasn't acurate because I'm on> coumadin. The problem with that is that ALL of my MELD scores have > been> calculated while on coumadin and UNOS doesn't have a policy against > it!> I told them they need to set a standard and stick to it. Either make> them all with, or all without coumadin, but don't change the rules in> the middle of the game. He was a pompous ass and wouldn't budge. Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Yes Marti, He has something called a tulip filter in.While this is good protection, I gather it depends too on where the clots form and unfortunately they couldn't get his below the veins that go to the liver and kidneys so that these could still get a clot.Lee Lee Did the dr ever talk about putting in a Greenfield filter? It is a device like an open umbrella that is placed in the superior vena cava to filter clots that may travel up from the abd and legs. I don't know if there would be contraindications with Bill's hx. Just a thought. MartiLee Bria wrote: ,I'm sure you have said, but I have forgotten. Why are you on coumadin?Did you also have blood clots?For the past year Bill has been on coumadin to keep his INR between 2-3 because of the pulmonary embolus. We are looking at taking him off it this month but are a little nervous since no one is exactly sure what caused the clot in the first place although they think it was a complication of the UC.Now that he doesn't have his colon, we hope that this will not be a problem, but we are concerned that the liver could still cause clotting problems.Always something,Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Marti, I'm with you, I can't move fast enough. However, I will have to deal with them to get my films and some of my other records that I don't have copies of. I'd also like to get copies of the letters requesting exception points - I'm curious to see what she put in them. (MO) Re: liver meeting Mel You rock. Run do not walk away from those jerks. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Kate, I plan to write a lot of people once I get listed somewhere else, just in case they get real ugly! Can you tell how little I trust them? How is Deb? I sure pray things are going well for you all. I know it's been a long, hard road and you all deserve some healthy, relaxing times! (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Tim, I appreciate you so much. You always have a kind word and it's always given in such a sweet way. " you'd be second guessing this man all the way to the recovery room-if he ever let you get that far " That's my exact thoughts on the matter! So, I'm going to run like the wind. In fact, I may change my name to " Gale " . :-) (MO) - Quote Link to comment Share on other sites More sharing options...
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