Transplant: BK Virus

@hello123 Thanks for your response & adding others💞

My current serum BK is less than 22

Hi @somedaydialysisfree 😊
With a BK of less than 22, it sounds like you will be negative very soon! Maybe your next test. What is the plan after you turn negative? You will turn active on the transplant list after three negative tests?

@hello1234, thank you for checking in on us. I am so sorry about your BK recurrence but I have faith that your team will resolve it! @somdaydialysisfree has a very positive attitude and I admire that!
@somedaydialysisfree, are you doing dialysis at home or in-center? My hubby was on dialysis for 3 years before transplant and he did PD(1year) and home hemodialysis(2years). You have a great attitude and I hope you can recover from BK soon and get off dialysis/get second transplant.
My hubby had his 1 year check up this past week, we got most of the labs back except for the antibodies(test for antibodies against transplanted kidney I don't know technical name!) and the 24 hour blood pressure results. I'm nervous about the antibodies test because he is off Myfortic and I don't know if that's going to affect the antibodies result. Fortunately, hubby has stayed free of CMV since they changed his immuno suppressant drugs. The transplant neph says he has been CMV free since the latter part of Nov 2022 so they're gonna stop testing for CMV on the standing order. I ask if possible it will recur he says there's 1% chance. Our local neph does test for CMV and BK and a bunch of other labs periodically, we see him every 2-3 months. My hubby has not had BK so no experience there. My friend did have BK 4 months after transplant but her numbers were in the thousandths, not millionths. The transplant team treated her BK the same way as CVM - lowered the meds and then start Valcyte and prednisone. Her BK did resolve eventually but she had a tough time getting her local neph to drop the prednisone. Her meds were restored to her normal dose once BK resolved. She did eventually get permission from the Mayo neph to drop the prednisone though. To my knowledge, her BK has not returned and she has since had her 3 year checkup.
I'm sorry your BK recurred and I don't have any knowledge about BK to give any constructive advice. Per our nurse coordinator, CMV does not damage the transplanted kidney but can be deadly(CMV+pneumonia), which is why Mayo took over following my hubby when he first had it!! BK virus however can cause damage to the transplanted kidney and lead to kidney failure. The protocol to test for BK virus is every 6 months at Mayo Az.
Wishing you all the best. Please keep me posted on how your team plans to treat your BK recurrence.

Yes, will be able to active once clear for 3 months 🙂

@caretakermom & @hello1234 I am presently doing PD, I was doing hemo prior.

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

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! 😊

@somedaydialysisfree, loved home hemo he did well on that. I gave him his HHD treatment it was a lot of work but got better clearance than PD. Had to quit PD because he had a leaky diapghram and the PD fluid was getting into his lungs! Took 1 year to find out about leakeage. 6 months into PD he got pneumonia and had to be hospitalized and it wasn't another 6 months that we found out there was what turned out to be old blood and lots of PD fluid in his lungs. I had previously complanied to the dialysis neph(he was not very good) and the doctor just brushed it off, listened to his lungs with stethoscope and said he was "dry"!! It was later that the pulmunologist who recommended thoracentesis that we found out he had at least 1 gallon of PD fluid in his pleural sac. Each time he had thoracentesis, he would temporary feel better but that day he would have issues with PD fluid draining. UCLA examined the fluid and it had gluecose so the pulmonologist concluded it was PD fluid. Had to have a thoracotomy to get clearance from UCLA to get listed because they wanted to make sure the black stuff (dried blood) in his lung was not cancerous!! It was a mess because although the thoracotomy was a success, the UCLA team gave him blood thinner post surgery and he almost bled to death and had to have emergency surgery on President's holiday. They had to call in the surgeons at midnight on holiday weekend to open him up and reverse Warfin!! They ended up giving up I don't know how many liters of blood product, because he lost so much!! Came out of OR with a intubated but thank goodness he was able to wean off of it. It was so scary I never want to go thru that again!! Anyways, he recovered thru the ordeal but it was all related to the PD fluid leakeage into his lung. I very much caution you to check for any leakage and if it happens, consider switching to a different treatment mode or ask your dialysis neph what you can do to "fix" it. In my hubby's case, the thoracic surgeon said he was NOT ALLOWED TO DO PD ever again!! Sorry for the rant but I was very scared when he had to go in for a second surgery at UCLA, in the same week that he had his thoracic surgery!!! It took him a while to recover but thank goodness his body was/is resilient and he recovered and eventually got approved for transplant!!
I don't want to scare you but a small population of people have this leakage issue. Most do well on PD. If you are getting good clearance and have no complication I would stay of PD. But home hemo worked better for my hubby. He felt terrible after treatment at in-center so he only did in-center for a few sessions.

@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.