Connect
Anyone experience multiple CMV resurgences post kidney transplant?
Hi everyone,
Anyone here who has experienced with multiple CMV resurgence? My husband got CMV about 3 months post transplant, donor was positive and he negative so it was a mismatched kidney. The first occurrence was due to the team increasing Valcyte to a maintenance dose, from 450mg to 900mg, 3 months post. Was told maintenance dose is commiserate with kidney function.
Soon after increase in Valcyte, labs showed WBC dropping and kept dropping until it was below 1, went from 5.1 to 0.7. So they held Myfortic, added prednisone but to no avail because WBC remained below 1. He got the Neupogen shots(3) which took a couple weeks to help recover WBC, went up to 6.1 at which time CMV became "undetected" again. So then the team slowly reintroduced back Myfortic, reduced Valcyte from 900mg to 450mg, prednisone,etc, basically putting in back in pre CMV medicine regiment. Well, his WBC started to go down again and when it got below a certain point, his CMV returned again, now at about 1800, first occurence was barely noticeable at 240. Myfortic likely lowered WBC I think.
So now second time around with higher CMV copies, the team seems like they are treating it like prior, reduce Myfortic, increase Valcyte, etc. I just don't see how this can resolve CMV because his WBCs will lower again(due to increase Valcyte) and pretty soon he'll be right back to below 1 and once again become neutropenic. It seems the culprit is WBC and if they can get it in the "sweet spot" his body will be able to keep CMV at "undetectable" level. But Valcyte unfortunately depletes hubby's WBC the higher the dose. According to nurse coordinator there is a fairly new med(Levtincity very $$$$) to treat CMV w/o WBCs depletion, but provider reviewed latest labs and said to continue to take meds as is and want to see labs next week. Other than CMV, all other labs component looks OK. Just frustrating to have to be taking a med which you know is causing CMV to emerge but at the same time it's supposed to help combat the virus. Anyone experience this and what did your team resolve? With the current treatment the team is applying, we are not confident that CMV will be controlled because of the never ending cycle of fluctuating WBCs. My husband is willing to try to new drug, esp when it has been effective in treating patients with similar issues re CMV and low WBCs. Just FYI, my husband bone marrow functions normal so the WBCs issues are all related to the meds he's currently taking. Would love to hear what your experience has been thank you for listening to my vent!
Like
Helpful
HugInterested in more discussions like this? Go to the Transplants Support Group.
Connect
Hi @hello1234, yes we are concerned about Sirolimus due to its possible side effects. I'm hoping that the PA will read Dr. Mour's clinical notes regarding the plan to switch to Sirolimus. After all, the purpose of this upcoming appointment is to (probably) transition to a new medication. Also, another MD may provide different insights into Sirolimus as it relates to hubby, and if both MDs agree on the switch would give reassurance that this is the right way to go.
Hubby was scheduled to see an MD and Mayo changed they called late Friday afternoon. I have yet to know the reason for the change. Perhaps it's because my hubby already saw an MD(8 month) about this and they're just waiting for 3 consecutive undetected CMV before switching, and they don't see a need for a MD for this occasion? I don't know for sure, just speculating.
I think time is of utmost important because I really don't want to wait around any longer if the best thing to do is to switch meds. If the next appmt is with a PA then so be it! What else can we do at this point?? Hope the PA is helpful and able to address questions/issues.
-
Like -
Helpful -
Hug
2 Reactions@caretakermom 😊
I forget what your local nephrologist situation is...
do you have a knowledgeable local nephrologist that you like? I love my local nephrologist because he has so much experience with kidney transplant patients and the meds. Maybe you can ask your local nephrologist what his patients' experience has been with Sirolimus...would that help you to feel more confident?
-
Like -
Helpful -
Hug
2 Reactions@hello1234, Mayo changed appointment back to an MD today. I was told who you get depends on availability so I hope there aren't anymore changes!
Our local neph is very difficult is get a hold of because he is in his office 1 or 2 days a week. He doesn't use email/patient portal to communicate to his many patients, uses telephone only! He is very experienced with transplant patients, among others, but defers CMV management/treatment to the transplant team.
Our appointment with Mayo is next week and will know for certain if transition to the new drug will occur. It's a good time to change meds because our Myfortic is due to be refilled literally in days!
-
Like -
Helpful -
Hug
1 ReactionHi @caretakermom 😊
I am so happy to hear that your hubby's appointment is now back with a doctor so you both can feel more comfortable with the upcoming medication change! Please post after the appointment. I am scheduled for another blood test next week and praying for my BK virus to be negative. My BK viral load results have been slowly moving lower, but it sure would be comforting to see the word "negative"! I am hopeful that your hubby and I will both get good news next week! By the way, did you ever get a resolution to your billing problem? Were they able to correct the claim to in-network?
@hello1234, I'm glad you're improving with BK and hoping your next lab shows BK clear. I do wish you'll able to go back to your pre BK meds. The provider looked at hubby's lab today and says 1 more undetected CMV then he can "either go back to Myfortic or start Sirolimus". Hopefully this week's labs will be available before our appointment next week. Where do you get your labs done? Hubby goes to Quest Diagnostics and lately it's been taking about 2 weeks to get lab results! Used to be able to get results in 1 week. The one disadvantage of getting a transplant out-of-state is that you're not able to use your transplant center to do weekly labs once you're back home.
No resolution from billing issue yet. I'm waiting to see how Billing is going to process upcoming claims. Our insurance says Billing needs to submit the claim properly(claims need to go to the local Blue Shield Blue cross office to the provider which is Arizona not Calif). Meantime, Billing says they're not doing anything wrong and the issue is between we and our insurance! I'm going to have to call our insurance and let them work it out with Billing if any issues with upcoming claims. Ugh!!!
-
Like -
Helpful -
Hug
1 ReactionHi @caretakermom 😊
I use Labcorp for my blood and urine tests. Normally, I have my test results back in a week. I am surprised to hear that Quest Lab results are now taking two weeks. That's a long time to wait for results. (I wonder if they are short staffed or what is happening).
Regarding billing, I was also told that the claim should always be sent to the local Blue Cross office for payment. Hopefully, your new claims will be processed with no problem.
Please keep post with how everything goes with hubby's doctor appointment about Sirolimus. I will keep you posted next week on the status of my BK viral load. I am hopeful that we will both have good news to share!
-
Like -
Helpful -
Hug
2 Reactions@hello1234, @caretakermom, I don 't have a Quest lab within 50 miles of my home, so I use the local hospital outpatient lab/testing facility that is nearby, and after my 7 AM labs, I return to the facility midmorning, to get a paper copy of my labs.
I am not familiar with how any other lab facilities operate, but I wonder of that is an option for you? This does not replace the lab sending the results by fax to my Mayo transplant dept. The Prograf kit goes thru the US mail, and that result can take anywhere from 7-10 days to post on my patient portal.
I hope that you both will be at a normal level with meds and labs soon. 🤍
-
Like -
Helpful -
Hug
2 Reactions@rosemarya, in California hospitals cannot except lab orders from out of state unfortunately and our local neph prefers Quest because he can easily access. Not crazy about Quest because they have poor customer service and the labs can be delayed up to 2 or more weeks, due to customer load. Also the gluecose lab/A1C labs they run are not accurate they tend to run low. One of the transplant neph said it would be impossible for a non diabetic to acheive, let alone a diabetic! Personally I prefer to go to hospital/UCLA but these places will not accept out of state lab orders!
You are very fortunate to be able do the monthly Prograf kit checks by mail. Mayo Az does not do any post txplant mail order due to patient load I was told.
@caretakermom, As for out of state lab orders, In Kentucky, My PCP has to rewrite/authorize/validate/transfer them - don't know the proper terminology, in order for them to be used here. I guess I assumed that was the situation everywhere.
We patients and caregivers are constantly learning new things, aren't we!
-
Like -
Helpful -
Hug
1 ReactionHi @caretakermom 😊
I hope all is good well! Did hubby meet with his doctor this week regarding transitioning to Sirolimus? Were you both able to get your concerns and questions answered?