Looking to return to the East Coast from CA

Given the cost of living and surviving in CA my transplant doctors here have suggested moving back to the east coast.  I am looking for other Heart-lung and lung transplant patients who are with Duke in NC.  My Social Worker at UCSD has reached out to the

SW and Post transplant nurses at Duke, they never return an e-mail or a phone call...this is concerning?  I am 12 years out post transplant.  Many patients in CA face homelessness and living in serious poverty.  I need to know what to expect before making

this change.  It took more than 30 years on the list to get my transplant and I have learned the hard way to investigate a move first.  Any assistance and information about your own experiences would be helpful 

Thanks, Bill

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  • The transplant center I am looking into is DUKE in North Carolina.  There are limited centers for Heart-Lung/Lung transplants.  Given my nurses and SW here in San Diego haven't had their e-mails and phone calls returned, I am hoping some patients will contact me here.  Patient experiences with Heart-Lung or Lung would be helpful.

    Thank you, Bill

  • Hi Bill,

    It might be more effective if you would state what area you plan to relocate to,  there are so many Tx centers along the east coast and most would accept a recipient for aftercare. The members could then advise you about Tx centers there and their quality and support there. I do hope you are doing well and that you find the answers to your questions.  Good luck!

    • Hi  Bill,

      The link below may help you to narrow down the correct entity @ Duke, to inquire about after-care for your Tx. I hope it helps.

      Duke Heart Tx Program 

      Heart Transplant | Heart Transplant | Duke Health
      Duke's heart transplant program is one of the nation’s largest, and our survival rates consistently rank among the nation’s best.
      • Hello,

        Thanks for the link.  Their Heart-Lung program is separate from their Heart program.  I read their website, I need patient experiences there to help me make a decision.  Stanford's Heart-Lung program does the most Heart-Lungs in the United States.  That is where I had my transplant 12 years ago.  It took 3 years to finally get my surgery after 2 failed attempts prior to that...medical errors.  Between treatment, the transplant, out of pocket expenses and aftercare more than $3 million dollars was paid out with my 2 insurances and my Mom having to sell our house to even get me on the donor list after more than 20 years wait.  There are lots of things Stanford didn't include in website.  Patients had very little support before and after.  While my 2 surgeons were fantatic, I came very close to not living to get another set of donor organs due to carelessness of the team.  I don't want to make that mistake again.

        My doctor here knew the previous H/L team.  He is ready to make the call for transfer when I am sure I have all my ducks lined up.  

        I hope you are doing well with your transplant? 

        Bill

         

        • Tx(s) plural! I have been blessed with two Txs, thirteen years apart and still going, though I have reached "elder" status now, something I never thought I would see. I hope you find your way as well. Living, in any condition, beats all else, and I do enjoy it vigourously. 

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