Transplant: BK Virus

@caretakermom Pd at home & hemo was in center. How did you like home hemo? Did he have a button hole to cannulate?

@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.

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. )

@hello1234, is it OK for me to PM you? I am just about to go out to do some grocery shopping i'll get back to you sometime this evening.

@somedaydialysisfree, I delayed for as long as possible to have hubby get a fistula. He was using a CVC and it worked for us because so much easier and not as much germs at home. The center always pushed for fistula(because they will get marked down if using CVC by CMS) but I was able to postpone due to COVID. I was able to convince the dialysis neph to allow him to keep the CVC(have to religiously keep in clean, dry and intact) until tranpslant. I've got lots of accessories that I purchased to clean and cover the CVC when not in use(special CVC tegaderms not provided by the center)!!
But even if you had to cannulate though, a lot of the dialysis patients( on facebook support page) used buttonhole and worked well. Some ppl preferred the the ladder method. We were prepared to do the button hole method because his fistula would have been on his bicep, which doesn't leave much room for laddering!! In our center, we had to get permission to do button hole because they consider to be have more infectious risk!

@caretakermom Pd at home & hemo was in center. How did you like home hemo? Did he have a button hole to cannulate?

I have had BK for 8 months. The titer was very high at first, but has gradually gone down. There is not any medication for it, only cutting out some of the immunotherapy to allow your natural body defenses to come back and fight off the virus. You will also have to be on more prednisone. Prednisone has some uncomfortable side effects. BK virus can also come back after it has disappeared due to changes in your immune status.

Hi @roxanne12345 😊
I am a 3 year post kidney transplant patient. I am now negative for BK in the blood and 7 million viral load in my urine. What are your current BK numbers and what are your reduced med dosages?

I am 9 months post transplant, I still have a BK titer of 141 , and my doctor won’t change my meds. The virus is known to keep reoccurring. Because of this, I do not take any Cell Cept, only small amount of Tacrolimus( 1 mg. Per day) and 10 mg per day of Prednisone. When the virus disappears, I will take Cell Cept again and cut the Prednisone dosage back to 5 mg.