Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 OH , to put it blunt - that news sucks... I hope everything works out - You so much deserve to get good news. Prayers continuing your way, all day - all the time!!!! , OH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 , good letter... Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 You go girl. If there is anything we can do ask. I am sure all of this is exhausting and I am sorry about that. It is the last thing you need right now. God Bless (and he will), Give Life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Mel: Good letter, good luck. Whatever it takes.dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Mel The age cut off must be your center. I was 50 when I donated to my son. The limit at Lahey is 55. How old is Denver? MartiCrazrNever04@... wrote: OK, I have been reluctant to write about this until I was satisfied with the answers from the tx team, but I'm going crazy. My potential donor, called me early yesterday morning to tell me that his coordinator had called him the evening before and told him they were eliminating him as my donor. When asked why, these were the reasons he was given: 1) that they are still concerned with his heart; he has "a problem," 2) the age cut off for donor's is age 50. I said, "WHAT?!" Neither of these two reasons make a bit of sense to us so I took it upon myself to write the following letter to the chief of liver transplant surgery -- the one I met with the last time we ran into a glitch. Also, lucky for me, the doctor that my donor met with first, the first day of his evaluation. I am still waiting to hear back from him. As you will read in the email, I mentioned that my donor purchased his own private health insurance. The reason he did that is because Dr. Chapman was concerned that after surgery there may arise issues that the team could not definitively say were a result of the donor surgery, and may leave him with outrageous medical expense. Once it was finally explained in detail, he purchased his own. Now, the thing is...there is not a policy in place, at -Jewish, that states that liver donors must have insurance coverage. (The kidney tx team does have such a policy, but the liver team has not yet adopted it.) However, it clearly makes them uncomfortable, and it has been my belief for sometime now that that has been the reason behind the team dragging their feet with his evaluation. Now that he has insurance I am curious to see what happens. As you will read neither of the "reasons" are valid in any way, shape, or form. And, if the age cut off truly is 50, why did they begin the evaluation in the first place? Lastly, for those of you I owe an email or a phone call, I must admit that between 's passing, overwhelming fatigue (trying to ward off another attack I'm afraid), and this news from my donor I have been short on words. Please pray, those of you that will, that the issue with my donor gets resolved. I have barely had the heart to mention to anyone in my family this new problem, because 's situation has been a very sad reality check for them. I have had PSC for a known 22 years and they are VERY nervous about CC. I don't blame them, and it breaks my heart to think that I may, once again, be the bearer of bad news and more heartache. Thanks for "listening"! Original email: Dear Dr. Chapman, I am writing to inquire about the accuracy of the information given to me by my potential donor. I spoke with him a few minutes ago and he told me that Suzanne, his coordinator, called him yesterday and told him that he has been eliminated as my potential donor. The reasons she stated make absolutely no sense to either one of us. She said there are still concerns about his heart, and stated that he has "a problem". He has been seen by Dr. Schwartz twice and his primary care doctor once. His first visit with Dr. Schwartz was due to an "irregular heartbeat" noted on his initial EKG. However, a repeat EKG and an exam with Dr. Schwartz revealed that there was "absolutely no reason not to move forward with the evaluation" as my donor. The transplant physicians apparently were not satisfied and ordered a stress test with 2D echo, again with Dr. Schwartz. Dr. Schwartz's office left a message on his answering machine within two days time of his testing telling him that all was well. Between visits with Dr. Schwartz my potential donor consulted a primary care physician, Dr. Misir, for a check up to enable him to get health insurance. Dr. Misir assured us that his heart rate and blood pressure "is that of an 18 year old." Earlier this week he was notified that his health insurance policy has been issued. Today, he was going to call Sandy Gray with the name of his insurance company and policy number. A policy was purchased after we became aware of the potential complications that may not be covered by my policy, post transplant. Now, for the second reason given. Suzanne said that the age cutoff is 50. If this is true why was he considered in the first place? If his age alone is enough to eliminate him he should have never had to endure all of the evaluation testing that he has. Everyone was aware of his age from the onset, so we are terribly confused by this new issue. Please advise me as to what has happened with his evaluation. We'd like to know what heart problem has eliminated him, and what doctor discovered this ailment, since no one that he has seen has stated such. We would also like an explanation as to why an evaluation would have even been considered on him when his age at the time the evaluation began was 57 -- 7 years past consideration, according to Suzanne. I eagerly await your response to these questions. I look forward to getting information that will help us make sense of this new information.Thank you for your time and assistance.Sincerely, R. Jett Scherder Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Marti, Denver is 58, was 57 when he started. The problem that I have is that they knew exactly how old he was when they began the process, in Aug.! If he was above the age of consideration, why did they put him through so many tests already? These are my questions to them, because currently I am very confused. If they knew he wasn't eligible and made him go through all of those tests anyway, then I think they should reimburse him for loss of wages, mileage, etc. That wasn't fair to him, or to me for that matter. They should have been honest from the onset. I'm hoping to get some answers tomorrow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Can you check with another OPO (Organ Procurement Organization) in another region and see what their age cut-off is???? Then your transplant center can just fax them all the information...that is what I'd do...I don't take "NO"....we had to drive 2 hours more for Bobby's transplant, but it was WELL worth it!!! Bobby & Anne Bobby dx PSC 5-00, transplanted 2-4-04, rediagnosed 10-04. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Mel, keep us posted!!! Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Anne, I will do whatever it takes, but before I do anything I'd really like an answer from Dr. Chapman and the tx team, because non of this makes sense. Not to mention, I have always believed that my donor's lack of insurance was a factor, and now that the chief of surgery is aware that he has his own policy, and the financial coordinator has the policy name and number I'm curious to see what happens. I am eager to hear from Dr. Chapman and will post his reply as soon as I do. Thanks for the idea, though. I will consider all options. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 PLEASE do, 1!!!!! Quote Link to comment Share on other sites More sharing options...
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