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Kirt S HCM since childhood Transplant 2009
Kirt S
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  • Transplant Location

    I have recently been directed to be evaluated for a heart transplant. I have two choices for the transplant - University of Wisconsin Madison or Aurora St. Luke's in Milwaukee.

    Has anyone had any experience with either of these facilities?
    Kirt S
    Age - 44
    HCM since childhood
    Long family history of HCM
    Myectomy & ICD in 1992
    Bi-ventricular device in 2006
    Heart transplant 12/29/09

  • #2
    Re: Transplant Location

    Kirt, is it your insurance that is mandating you go to those 2 facilities? You are not that far from Mayo or Cleavland. I would defnitely look into those as they are HCM and do more transplants than the other 2. You can get on the UNOS web site and get statistics for all centers. I had mine done at Mayo and it went well. Just get all the info you can.

    Midge Rollins

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    • #3
      Re: Transplant Location

      Umm, Mom....how are you using my user name, did you forget to log out and log in as yourself from my computer? LOL....

      Comment


      • #4
        Re: Transplant Location

        Kirt - I see you are new to the message board - Welcome.

        Wishing you the best, Linda

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        • #5
          Re: Transplant Location

          Midge,

          Thanks for the comments. Insurance is driving the two locations - I am ok with both of them, just concerned about the distance of one of them. Not sure if I want to drive 1.5 hours (one way) each time I need to see a doctor.

          Kirt
          Kirt S
          Age - 44
          HCM since childhood
          Long family history of HCM
          Myectomy & ICD in 1992
          Bi-ventricular device in 2006
          Heart transplant 12/29/09

          Comment


          • #6
            Re: Transplant Location

            Studies have shown that the outcomes tend to be better at Centers that do a lot of transplants (>10/year). I looked at UNOS (http://optn.transplant.hrsa.gov/latestData/rptData.asp). Both these Centers did numbers in the upper teens in 2007 and 9-10 in 2008. Besides checking with UNOS, you can try to find people who have been transplanted and try to meet with the transplant teams. You want to be with a group with whom you will feel comfortable, because the relationship will be lifetime.

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            • #7
              Re: Transplant Location

              Hi,

              I was wondering if anyone else has experienced my problem. I was informed last week that I need a heart transplant. I have been a patient at Johns Hopkins for over two years and feel very comfortable with them. However, my insurance company has decided that they are not a center of excellence for their company and told me I would have to go to a facility that is part of their group. I also live in Virginia but have not minded driving there for 3 hours because of the care I have received from them. They put a defiberator pacemaker in me last year. Has anyone else been through this? Thanks for any hep!
              Steve

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              • #8
                Re: Transplant Location

                If Johns Hopkins has been doing your care I would appeal your insurance company's choice. Write letters have JH write letters get on the web UNOS and get the statistics for each facility. We need to advocate for the best possible care for ourselves. You may want to call Lisa next week as I know she has some good canned lettes for this type of insult.
                Midge

                Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                ICD&Pacemaker 1996
                Heart transplant March 19, 2004 @ Mayo Rochester
                Mom of Kaye.

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                • #9
                  Re: Transplant Location

                  Originally posted by Midge Rollins View Post
                  If Johns Hopkins has been doing your care I would appeal your insurance company's choice. Write letters have JH write letters get on the web UNOS and get the statistics for each facility. We need to advocate for the best possible care for ourselves. You may want to call Lisa next week as I know she has some good canned lettes for this type of insult.
                  Thanks Midge! I left a message for Lisa. I just cannot believe the hassle my insurance company is putting me through. Since I have had so much already done at Hopkins and feel very comfortable with them it is such a shame that my insurance does not recognize them when it comes to the transplant part. It was good hearing from you and I pray you are well. Happy Thanksgiving! Steve

                  Comment


                  • #10
                    Re: Transplant Location

                    Steve,

                    I agree with Midge that you should appeal the insurance carrier's decision. It may help in the appeal to outline the previous care that you have received with them (citing continuity of care) and, if possible, include any documents you can find that shows John Hopkins is better than the centers they want you to go to.

                    Tammy S (Kirt's wife)
                    Kirt S
                    Age - 44
                    HCM since childhood
                    Long family history of HCM
                    Myectomy & ICD in 1992
                    Bi-ventricular device in 2006
                    Heart transplant 12/29/09

                    Comment


                    • #11
                      Re: Transplant Location

                      Here is an article from the Hopkins website showing the statistics of a study done by Hopkins showing the importance of having a transplant at a high volume center.


                      http://www.hopkinsmedicine.org/Press.../01_29_08.html
                      Daughter of Father with HCM
                      Diagnosed with HCM 1999.
                      Full term pregnancy - Son born 11/01
                      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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