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hello1234 (@hello1234)

Transplant: BK Virus

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

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@hello1234

Hi @caretakermom 😊
Don't be too concerned regarding the HLA Class I & II antibodies blood test result. I have been on reduced immune suppression for over 6 months because of the BK.
I was super concerned about possible development of antibodies too. My ALLOSURE test showed an increase which made me very concerned.
My HLA antibodies test just came back NONE. I am sure your hubby will be the same!
Did you mention that hubby started with PD at home for the first year and then switched to at home hemodialysis? I usually hear that patients start with hemo and move to PD. Was there a reason hubby moved off of PD? My mother is currently on hemodialysis at a Center so I am curious about the possibility of PD at home for her.
I am thrilled to hear that hubby is CMV free and doing well! 😊

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Replies to "Hi @caretakermom 😊 Don't be too concerned regarding the HLA Class I & II antibodies blood..."

@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.