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
@hello1234, he has some tremors but not something that is noticeable or serious. I notice it because I know what he was like before taking these drugs. You never know, slight tremor can get worse as time goes on but good to know there is a good alternative to Tacrolymis.
Totally different topic. Have you ever had any issues with how Mayo bills your insurance? We are having issues with that right now and trying to get that cleared up. We don't know who we can contact to get it cleared up. I posted this under "Visting Mayo Clinic" cuz didn't think it would be appropriate to post under "transplant". If you have time I'd like your feedback. Thank you in advance.
-
Like -
Helpful -
Hug
1 ReactionHi @caretakermom 😊
I have not had any issues with billing since my transplant, but I have had billing issues in the past from my local hospital.
At that time, when I called my insurance company the very helpful customer service representative explained it was a diagnostic code problem that was causing the rejection of the claim. She kindly told me the correct code, and then I called the hospital billing department and told them the code to use and re-send. All was well.
Did you speak with your insurance company to see what's up? Do you think it may be something like that?
@hello1234, it's not a coding issue. Our insurance company verified that we have in-network access at Mayo. Also, on Mayo's website there is a list of insurance that Mayo contracts with and it shows our insurance is in-network. Have already tried to speak with billing and they have not been very helpful. The billing supervisor said she would look into it and get back to be next week.
Hi @caretakermom 😊
Please keep me posted on what the Mayo billing supervisor tells you next week. I feel confident that she will solve this clerical error for you.
I think she is going to call the insurance company to find out what document she needs to send to correct this claim for you. This is what she does all day long. 😊
Please keep me posted!
-
Like -
Helpful -
Hug
1 Reaction@hello1234, I assume you have in-network access at Mayo Clinic? When you see a provider there do you need to choose only ones from in-network? We were formerly told, 2021, that once you have in-network access at Mayo, that means all the providers/services done at Mayo will be in-network. Has this been your insurance?
Hi @caretakermom 😊
Yes, my experience has been that all Mayo providers and services are in network. Are some of your Mayo doctors or Mayo testing being billed as out of network? Is it a certain speciality like anesthesiologist that was billed as out-of-network?
Hi @hello1234, all of the services they have billed so far are out of network. My hubby has Medicare as primary and employer insurance as secondary. Our secondary insurance is BCBS of California PPO(also known as Anthem Blue Cross of Calif) which is listed as in-network in Mayo Clinic in Az. The billing supervisor seems to imply that not all providers are in-network at Mayo which is contrary to what we were told when we first signed up to go to Mayo in 2021!! She said she would look into it but so will I. I have already spoken to Member services but I'm going to get it in writing.
-
Like -
Helpful -
Hug
1 ReactionMy experience is that straightening out billings at any institution can be complicated and take some time. To be sure that you get your anticipated return call be sure to check spam calls or blocked calls! I was viewing my records this morning and there is a Notice about just that - phone calls being blocked by phone filters. Check your patient portal to see if you got the list of number so that you have a correct phone number for your Mayo location in your contact list so that it will not be blocked by your iPhone.
-
Like -
Helpful -
Hug
3 ReactionsHi @rosemarya, thanks for chiming in. I've been trying to get this resolved since June 2022. My husband had his transplant in March 2022 but we didn't get to see the EOBs until June. The EOBs showed that Mayo had bill the claims as out-of-network. As you know, insurance verification is done from transplant workup, pre/post transplant. Whenever you're deactivated they have to reverify your insurance before they put you back on list. So they have verified our insurance all along and at no time did they mention that our insurance does NOT have in-network access. In fact, I just checked with Member Services and they confirmed our insurance is in-network with Mayo Clinic Az. I posted this issue under "Visiting Mayo Clinic" but didn't get much response. I've called Mayo Billing about this matter and they absolutely were not helpful; they are waiting for someone to tell them how to proceed. I'm just wondering who I can talk to about this matter and get it resolved!!
@hello1234, may I ask how long it took your WBC to restore after you got off Valcyte? Labs drawn on 10/17/22 came back and show WBC is even lower, after getting off Valcyte. Waiting to hear from provider whether they want my hubby to get neupogen shots which would help bring up WBC quickly. I did not expect WBC to trend down, had expected the same or higher. Had to postpone dental appointment once again. Worried this may become mouth infection!!
-
Like -
Helpful -
Hug
1 Reaction