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Everolimus and proteinuria

Transplants | Last Active: Jan 20, 2023 | Replies (10)

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@hello1234

Hi @caretakermom
I know exactly how you feel regarding the process of getting the medications and dosages adjusted just right.... Stressful!
I am happy you have an appointment in 2 weeks to discuss the results and plan moving forward with the doctor.
Your local nephrologist is correct that many patients are on 360mg bid Myfortic along with Tac so it's an option on the table if your transplant doc agrees that it's a good solution to avoid the recurring CMV infection and the adverse reaction of Everolimus (proteinuria). You are also correct that Sirolimus lists proteinuria as a possible side effect too.
I assume you went this morning for the new lab work and protein test. Hopefully, the results will come back soon.
I feel good about the fact the doctor did not think it was urgent to stop Everolimus ASAP, but instead wanted to test the protein level. It sounds like he didn't feel there was immediate danger to the kidney in proceeding with the Everolimus for a couple more weeks.
Please keep me posted on how things are going and the results of hubby's tests. I am hopeful that one more tweak of the meds will achieve a good level of protection without recurring infection or side effects. This certainly is an ongoing journey and your hubby is very blessed to have such a wonderful wife and advocate! I am happy he is feeling better now that the Valcyte has stopped.
I am also looking forward to hearing if anyone on Connect has any experience with Everolimus or Sirolimus and proteinuria. Hopefully, they will jump into this discussion too!

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Replies to "Hi @caretakermom I know exactly how you feel regarding the process of getting the medications and..."

Hi @hello1234, I'm glad to hear that your BK is improving. I hope that with a bit more time your BK situation will resolve itself!!
We had a tele-health appointment with one of the Mayo Clinic Az PAs. He is someone who we saw during hubby's transplant period at Mayo earlier last year. Since we last corresponded hubby has had a couple more labs done, both of which show negative protein in urine. Brought it up to the PA today he says he is not concerned because the past 2 labs show negative protein in urine. Mayo did ordered the protein creatinine lab when protein was first detected and the lab result showed that it was just a trace amount, so miniscule that the lab was not able to measure the amount of protein for the protein creatinine lab. The nurse says the providers are not concerned if it's only a trace, and with subsequent labs showing negative protein in urine.
The providers are still monitoring his CMV and thus far it hasn't returned. The change of meds seems to be doing its job, however, the providers are continuing to monitor his CMV because it may possibly return. He says to do two more weekly labs and then if CMV is still undetected to do monthly labs. Then they will monitor him for another few months and then they will stop, if everything goes well. So all in all, changing the meds seems to be. helping thus far.

Not sure if the rest of my post should be here but here goes.
We are returning to Mayo Az at end of of Feb and beginning March for hubby's 1 year follow up. They will repeat all the tests they did on his 4 month checkup. At the 4 month checkup, the 24 hour Blood Pressure Monitoring Test was coded incorrectly and as a result we got an out-of-network bill that I had to resolve(Billing didn't do anything I had to talk to the documentation group).
As far as our insurance goes, Mayo is still submitting claims as out of network. As a reminder, hubby has Medicare (due to ESRD) as primary and EMPLOYER Anthem BCBS(not supplemental) as secondary. As long as Medicare covers a service our insurance will pick up the rest regardless if in/out of network. The problem/issue occurs when Medicare does NOT cover a service and Mayo submits the claim as out-of-network is what we have an issue with. Because our employer insurance has in-network access, therefore anything Medicare doesn't cover Mayo billing should file an in-network claim to Anthem BCBS. Apparently that is not what is happening and I've already asked Anthem BCBS to look into it but haven't heard back from them. Am worried because we'll be visiting Mayo for 1 year checkup services and I'm anticipating a lot of billing issues because Mayo billing hasn't changed the way they file our claims. The biggest issue with the Mayo Billing dept is I have no idea who is in charge, it's a big black hole that no one - not even the Mayo nurses and social workers, know who is in charge!! I have called billing numerous times and written to them explaining our insurance situation but apparently no one there is taking action to fix the issue. Their response to me is always: if Medicare doesn't cover a service then your supplemental won't either. And I keep having to explain to them that hubby's SECONDARY Anthem BCBS(not supplemental) is employer insurance and has in-network access to Mayo Clinic AZ( documented as one of insurance carriers they have in-network contract with!!) Therefore, Anthem BCBS will cover the services according to employer's health plan; it doesn't depend on whether Medicare covers it or not. Incidentally, my hubby will be ineligible for Medicare in April 1, 2025 which would be 3 years post transplant. Sorry for ranting. I get all riled up every time I talk about the Mayo billing department and how incompetent they are. We pay for both the Medicare and employer insurance premiums, plus our employer insurance has in-network access to Mayo Az, but the Mayo billing dept is filing out of network claims denying our in-network benefits, billing us at out-of-network rate on services not covered by Medicare !!
If anyone has any ideas of what else I can do to get Mayo Clinic billing to fix this, please chime in!!!