Transplant patients - anyone get anemia or Parvo Virus?

Hi @caretakermom 😊
CareDx Allosure is a special test that your local nephrologist can order for you. It is not through Quest or Labcorp.
They send a mobile phlebotomist to your home to take the blood and ship it to be processed. The only thing you need to be careful of is insurance.
Not all insurance companies will pay for this test and it's an expensive test. So make sure you call their customer service to ask about that and confirm that your insurance will pay for the test.
I think there is also a different company with a similar rejection test that people use too. Your local nephrologist may have a favorite test company that he likes to deal with for this purpose.
Regarding my lower dose, my Mayo nephrologist controlled that decision completely.
(The only thing I needed to advocate for was to speak with him).
I really like your plan to have your local nephrologist consult directly with Mayo AZ to get their thoughts on the best medications and dosages for this situation.
I also think it's reasonable to share your feelings with your local nephrologist regarding lower dose Everolimus to see what he thinks. I think a lot will depend on how fast the anemia resolves and how comfortable they are restarting that drug at any level.
As long as your nephrologist is speaking with a Mayo nephrologist you will be in great hands.
Regarding prednisone, I never had an immune suppression medication actually removed, so I did not take prednisone.
I did take prednisone for the first 30 days after transplant, then off.
When is hubby scheduled for his next CBC lab test?
Do you think you should notify your local nephrologist about the high sugar issue that prednisone is causing?

@hello1234

The next CBC test will be done on day of bone marrow biopsy which is this coming Wednesday. Then I think the hematologist will do it again on 08/24 when we see him to discuss bone marrow biopsy.
My hubby is trying to make the insulin adjustments to the high sugar but so far no luck. I remember him having the same issue the first time when they put him on it right after txplant. He was taken off right before discharge and put back on when dealing with the CMV recurrence. Then off when switched to Everolimus. Will speak with home neph or endocrinologist if still not able to control blood sugar.
So the test is called CareDx Allosure? Is it considered an Rx like a drug Rx? I will ask the benefits CSR to see if it’s covered under our insurance.

Hi @caretakermom 😊
CareDx Allosure is a special test that your local nephrologist can order for you. It is not through Quest or Labcorp.
They send a mobile phlebotomist to your home to take the blood and ship it to be processed. The only thing you need to be careful of is insurance.
Not all insurance companies will pay for this test and it's an expensive test. So make sure you call their customer service to ask about that and confirm that your insurance will pay for the test.
I think there is also a different company with a similar rejection test that people use too. Your local nephrologist may have a favorite test company that he likes to deal with for this purpose.
Regarding my lower dose, my Mayo nephrologist controlled that decision completely.
(The only thing I needed to advocate for was to speak with him).
I really like your plan to have your local nephrologist consult directly with Mayo AZ to get their thoughts on the best medications and dosages for this situation.
I also think it's reasonable to share your feelings with your local nephrologist regarding lower dose Everolimus to see what he thinks. I think a lot will depend on how fast the anemia resolves and how comfortable they are restarting that drug at any level.
As long as your nephrologist is speaking with a Mayo nephrologist you will be in great hands.
Regarding prednisone, I never had an immune suppression medication actually removed, so I did not take prednisone.
I did take prednisone for the first 30 days after transplant, then off.
When is hubby scheduled for his next CBC lab test?
Do you think you should notify your local nephrologist about the high sugar issue that prednisone is causing?

@hello1234 ,

Did your transplant nephrologist or your home neph submit the prior authorization? The first 3 years will be covered as “routine surveillance” . After that time, it’ll be covered as “for-cause”. Our insurance company covers the test only if there is “clinical evidence of active allograft injury or suspected acute rejection”. So the doctor has to submit recent lab trends showing kidney function decline, a signed letter of medical necessity and an explicit statement that impacts treatment plan.
Just curious, what would be hubby’s reason for doing this test? Suspicion of acute rejection because patient is not meeting the required trough level associated with his txplant drugs? Asking becuz I want insurance to cover test. Note: not sure if home neph would agree to this!

Hi @caretakermom ☺️
My home nephrologist requested the test due to my high risk profile.
At this point, hubby is not at high risk for rejection. Let's see what the doctors decide is the best customized med plan.
They may decide that they don't want to use Everolimus even at a low dose.
He may end up with a new medication that gives them (and you) confidence that there is low risk for rejection.
Let's wait and see in the next couple of weeks what is decided. Hopefully, Allosure testing will be unnecessary and all will be well.

Hi @caretakermom ☺️
My home nephrologist requested the test due to my high risk profile.
At this point, hubby is not at high risk for rejection. Let's see what the doctors decide is the best customized med plan.
They may decide that they don't want to use Everolimus even at a low dose.
He may end up with a new medication that gives them (and you) confidence that there is low risk for rejection.
Let's wait and see in the next couple of weeks what is decided. Hopefully, Allosure testing will be unnecessary and all will be well.

@hello1234

I will advocate for him to stay on Everolimus because it has worked well up until now - if we can manage the anemia with a trough level adjustment that the txplant center agrees to. At this point I don't want to dally with a brand new medication because that could also lead to other undesirable side effects. At the top of my priority list is also to get rid of prednisone. I'm concerned they could say he can be on a lower Everolimus dose but be on prednisone for life!

Hi @caretakermom
I have been thinking of you today. Did hubby have his bone marrow biopsy and updated CBC taken at the UCLA Hemotologis?
I hope, the anemia was slightly improved today without the Everolimus?
I hope all went well. Please update when you have a free moment. 😊

@hello1234

Hi @hello12345

Thank you for thinking about us. My hubby had his bone marrow biopsy at the UCLA Imaging & Interventional Center this afternoon. Got his CBC (hematologist also ordered CMV PCR) labs draw just prior to procedure - hematologist says CBC must be done same day but prior to procedure. Everything went well so hopefully will get the results soon. BTW, he had a bone marrow biopsy prior to kidney transplant because his platelets were/are always low so Mayo Az wanted a hematologist to clear him. The procedure was painless and quick, had to stay 2 hours for observance. The bone marrow biopsy can confirm whether hubby has a Parvovirus B19 infection while blood PCR is the usual first-line test.

Hubby's anemia seems to be improving without the Everolimus, does not look as pale mainly due to the blood infusion but he's also more active/talkative now.

I cannot wait until we meet with home neph again to learn more about Mayo Az's plan for hubby. Really want to re-try Everolimus but under more cautious monitoring this time and to discontinue prednisone. I'm having to modify his meals due to the prednisone because it's spiking his blood sugar.

I apologize for not responding sooner - I have not had any free time until now and it's 8:12 pm pacific coast time!