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| | |-+  Denied a transplant without dialysis. Any suggestions??
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Author Topic: Denied a transplant without dialysis. Any suggestions??  (Read 5954 times)
lawphi
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« Reply #25 on: February 03, 2012, 05:26:45 PM »

Johns Hopkins is the place for you.   JH works seamlessly with my husband's PCP and Urologist. 

I love his nephrologust at JH and we do not plan to transition from him despite being seven hours away.  We have his home phone number, but have not had to use it!

In regards to a fistula, it isn't so bad.  My 30 year old husband's is perfectly flat and smooth with two small scars from button holes.   
« Last Edit: February 03, 2012, 05:32:01 PM by lawphi » Logged

Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
dstevens
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« Reply #26 on: February 03, 2012, 09:31:20 PM »

Good to hear about JH! Do you think you could pass along his name for me? I'd love to see if I could go there (my insurance being a potential problem). Did they really get a transplant done for your husband 2 months after an evaluation? That's incredible. I'm being told to expect to wait a year before anything potentially gets done (despite a huge list of people wanting to get tested). How did he do his follow up with being 7 hrs away? I wasn't sure how that worked either. Thanks for all the info!!
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lawphi
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« Reply #27 on: February 05, 2012, 08:27:29 AM »

He remained in Baltimore a month after his transplant and returned at 3, 6 and 12 months.  If all goes well, we will only need a face to face visit once a year.  If not, he would likely receive plasmapheresis and we would have to go to Baltimore anyway.

We live near a major airport with inexpensive flights to Baltimore 7 times a day.  We found a great hotel in Fells Point with a shuttle to and from the hospital. 

We sent prior X-rays, ct scans, lab work to JH and waited a month for appointments with the transplant team.  A kidney was found two months later.

Dr. Kraus is his post transplant nephrologist.  He only handles immunosuppression. And we would need a local nephrologust for blood pressure medication if needed.  Just call the number listed on the website for transplant information.  They will handle everything from that point.   
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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