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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!
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@caretakermom 😊
You are an amazing caretaker to take on at home hemo dialysis! Does that involve you putting in needles or is there an alternative, easier way to access the fistula?
Regarding the appointment in two weeks, I assume the doctor feels that the CMV will be undetected at that point and your hubby can start Sirolimus. I am wondering why you need an appointment for that? Is he going to discuss the dosage amounts or something like that at the two week visit? Not sure what the appointment in 2 weeks would be about. (I thought you were going to say the follow up was in two months, not two weeks).
@hello1234, Dr. Mour says and notes he wants hubby to be seen again in 2 weeks. I had to call our nurse coordinator to tell her that because the video conferencing was not yet ordered. But like you had mentioned earlier, perhaps it's Mayo's protocol to meet with with patient directly when they're going to be introducing a new med cocktail.
One thing that may make a difference is we do not know who the provider will be, may not be Dr. Mour again which means a different provider may have a different opinion. The nurse coordinator says the Mayo providers rotate in and out, one week doing out patient clinic, and other in-patient. Hoping whoever we get that they will stay consistent in their decision making regarding med changes.
Regarding home hemo, hubby opted not to get a fistula because we had a hunch that hubby may get a call from Mayo soon. And sure enough about 8 months after Mayo eval they called to say they had a kidney for him. He had a Central Venous Catheter and we had to keep it pristinely clean to avoid infections. Used a special dressing for the CVC, special precautions had to be taken when showering, then dressing the CVC after. After done showering it was 20 minutes of cleaning/dressing the CVC, cleaning the wings and the lumens with alcohol, cleaning the skin around the CVC with Except, wrapping the lumens with gauze and dress it with flexible netting, etc. It was a lot of work and must follow protocols to keep it sanitary! My hubby was on home hemo for about 2 years and never ever got an infection from using CVC. However, the Mayo staff does encourage CVCs because they are prone to infections( if not properly taken care of), but it did make giving home hemo dialysis easier because it was plug and go. Also, the dialysis center was more lenient in letting us use the CVC because we were doing home hemo, thus less germs than in-center. My hubby said when he got dialysis at Mayo, that the dialysis staff liked the way I dressed his CVC!! And when he was scheduled to had his CVC removed after transplant, the two nurses who removed it said I met the gold standard in caring for the CVC!! I think they had expected to see something gross come out but the all the parts of the CVC was as good as new. And, it was the only CVC he ever had, he didn't have to replace it because it was still working well even after 2 years!! I was prepared to learn about different cannulation methods had our dialysis center insisted upon it but I guess they didn't push us because we never had any issues with infections and my husband was showing good clearance in his labs!
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4 Reactions@caretakermom 😊
Wow, you have the knowledge and expertise of a Registered Nurse! Incredible. You mentioned your hubby had a routine to cover the catheter before showering. That has always been a challenge for my mother. Did you discover a way to waterproof that area so hubby could wash his hair in the shower without getting the catheter wet?What product and tape did you use to cover the area?
I am hoping you have a secret I can use with Mom! ❤
Hi @hello1234, I used water proof tegaderm to over the area around CVC. I got one of those that comes in rolls and cut to fit size. I usually double over where the catheter insertion is just to be safe. After the shower, I make sure to clean all parts of the catheter really well with alcohol(wear gloves and mask), placing the cleaned portion on gauze. You can also use Alcavis to clean. Then I clean the flesh all around the catheter with ExCept, let air dry then place a new tegadterm(cut for CVC) around the catheter, and keeping the wings anchored down. You'll have to buy these Tegaderms made to fit CVCs. Take both lumens and wrap them in gauze put flexible netting over the gauze to keep it from unravelling. The last time I did all this was over 8 months ago. I used to go on autopilot doing it. Now is like I'm having trouble remembering the steps!
Some people cut up ziplock bags to cover the CVC but I have never found them to be useful because none of the tapes I used stick to the flesh very well. Tegaderm works but costly. I'm sure you can ask the registered nurse at the dialysis center for more suggestions. Some wear a beautican cape to cover up the breast bone so they can wash hair in the shower. There is a bunch of suggestions on https://www.facebook.com/groups/HomeDialysisCentral/
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2 Reactions@hello1234,
Regarding the appointment in 2 weeks - like you, my initial thought was why would you need a video appointment to start Sirolimus? You make a good point so I'm going to ask the nurse to see if it's really necessary to have the video appointment when they're already reviewing weekly labs.
Question: when you have an appointment with your transplant team, are you sometimes assigned to a PA, not getting an MD depending on availability?
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2 Reactions@caretakermom 😊
Thank you so much for the tip about Tegaderm and the beautician cape! The cape is a terrific idea as added protection.
I also appreciate hearing the detailed procedure you followed. All I can say, is you are AMAZING!
Please post with an update regarding hubby's upcoming video appointment, final "undetectable" CMV lab result, and the start of Sirolimus. I am very hopeful that this new cocktail will prevent the return of CMV and keep away any signs of rejection!
Keep us updated on hubby's progress and thank you so much for sharing all your dialysis tips! ❤
@caretakermom 😊
Yes, it's difficult to get an appointment with a doctor through scheduling. I also was assigned a PA instead of MD for my check up due to availability.
My local nephrologist and my other local specialists use a PA too to cover the high volume of patients, but the good news is the medical doctor comes in at the very end of every appointment to make sure that something important is not being missed. I love that system!
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1 ReactionHi @caretakermom 😊
I hope you had a nice Thanksgiving. Were you able to get your follow up appointment with the doctor (or PA)?
Hi @hello1234, I hope you had a great Thanksgiving too! We had a great time with just immediate family this year. Relatives were ill so it was best to stay home this year and we all had a wonderful time!
Earlier this week I called our nurse coordinator to ask about whether it was necessary to have another appointment, since we just had our 8 month. She says a face to face appointment is usually standard protocol whenever there is a transition to a new medication, at least that's what she's been told. So I scheduled the appointment but was originally assigned a PA. At Mayo Az, you do not meet with an MD at the end of session when you have a PA appointment; it's with the PA the entire time! I called scheduling and had them change to an MD. Then late yesterday they called to change it back to PA! Wanted MD because it would have been good to seek second opinion re change of meds, per nurse coordinator. Very disappointed Mayo changed the time and the "provider", without confirming with us first! The scheduler says she would send a message to the provider(who??) noting our preference to see MD and would get back to us. But as of now, the appointment has been changed to suit Mayo and it will be with a PA.
I'm making a big fuss about this because with meds changes we like consulting with MD, especially when they will be transitioning meds that day!
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1 ReactionHi @caretakermom 😊
Sounds like a lovely Thanksgiving!
We stayed home to be safe too.
Regarding scheduling, it sounds like there is a very high volume of patients needing follow up appointments and the doctors are being super stretched between the hospital rounds and clinic outpatient appointments.
I am thrilled that you met with a MD to discuss the change to Sirolimus to avoid resistant CMV. (My fear was that a nurse or PA may not have made that important change in medication). Are you saying you want a second opinion on that plan? Are you concerned about Sirolimus?