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hello1234 (@hello1234)

Transplant: BK Virus

Transplants | Last Active: Jan 14 5:21am | Replies (117)

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@hello1234, see my response to @somedaydialysisfree for hubby's dialysis treatment order. Yes most people start with hemo(in center) then PD then HOME hemo or HHD, then nocturnal hemo is available at your center. If you have someone who can give your mom the treatment doing HHD I would definitely consider that. It is a lot of work (5 sessions a week) and then you have to do the machine maintenance(very easy) but also deal with machine issues(not fun but can be resolved). All in all still much better than in-center because you can talk to your mom's dialysis neph and work out a dialysis script(how fast to run, how long, etc.) that work best for YOUR mom, not using cookie cutter script!! Every patient has different needs and have to find what works best for them IMHO.
I think the antibodies test is called DSA?? Not sure, it's still pending along with the 24 blood bp test. I'm concerned because hubby is off Myfortic and it's Myfortic that keeps the antibodies from forming??? I don't know the details. I mentioned this to the doctor at Mayo Az but he didn't seemed concerned. In fact, he says he prefers the Prograf/Everlolimus drug combination which is what hubby is on. It was great that we got to see the same doctor who initially recommended a change in drugs. Originally we were supposed to see a PA, but was changed due to schedule comflict!!
I do hope that you get your BK infection resolve. I'm happy to share what I learn so don't hesitate to ask questions.
BTW, I think I may have found out why the claims from Mayo are all showing out-of-network. It's another mess I'll have to resolve with our secondary I think it has to do with their internal processing of these claims!! Anyways, that's another story.

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Replies to "@hello1234, see my response to @somedaydialysisfree for hubby's dialysis treatment order. Yes most people start with..."

Hi @caretakermom 😊
Thank you so much for the scoop regarding the dialysis choices. You are definitely an excellent source of good first hand information!
Regarding the HLA CLASS I &II antibodies test, I think it's also called the DSA antibodies test looking for any early signs of rejection. Please keep me posted on hubby's results.
His current immune suppression meds are excellent for keeping rejection away. With the meds that you mentioned, Myfortic or Mycophenolate are definitely not required to be protected. (which is why the doctor was so comfortable). I am very happy that you got to see the same doctor!
(When you have a chance, please update me with your insurance discovery. I was just billed out of network for some reason. That's a new thing that never happened. )