A couple of weeks after I was discharged from kidney transplant in May, I had a severe infection and was confined in the hospital for 4 days. I was taking 2 capsules of Cellcept, and my doctor completely took me off this med. After a while, I was back on 1 capsule. The infection was on and off. Recently, I was tested positive for both CMV and BK virus. The rejection rate also elevated above normal range. I’m up for kidney biopsy to identify what’s causing it.
The surgery and recovery went well. It’s the meds that are giving me issues. I’m praying that there is nothing serious and early treatment will fix it 🙏🏼
Hi Leah, yes CMV seems to be very common in transplant patients. Prayers also for a great out come. They did a similar thing with me with CMV and mine was a human version of Parvo B19. Luckily taking me off cellcept helped alot and now I'm only on Tacrolimus but monitored monthly. So far no issues with rejection and it's been 4 years this January.
Blessing
Hello @leahdrose
Thank you for jumping into the conversation! Do you currently have CMV and BK or have they been resolved? Do you know your current CMV Quant PCR blood test number and BK? After 6 weeks of 900mg Valcyte twice a day, my CMV number went from 140,000 to below <200 which is considered normal after infection. I was VERY frightened during my 6 week bout of CMV so I am sure you are feeling the same. My donor was CMV positive and I was negative. I got CMV approximately 7 months after my kidney transplant. Are you a Mayo Clinic patient? If so, and you are still battling CMV and BK, ask your Transplant Case Manager for a consultation referral to the Infectious Disease Transplant Clinic. You can have a video call, they have access to all of your records, and they are very helpful. They coordinate with transplant and help resolve these scary viruses. Is ID currently involved with your situation along with your Transplant Team? As you know, with our transplants it's a fine line between infection and rejection. It's important to know if your current rejection numbers are caused by infection or not enough immune suppression. To resolve the rejection they will be diagnosing if the active CMV and BK is causing the problem which may mean less Cellcept again so your body can fight off the virus, or if the viruses are resolved and you need an increase in dosage to fight off the rejection, or if it's something else. When is your kidney biopsy and how are you latest CMV and BK blood numbers this week? I assume you are having blood tests weekly?
The great news is that Mayo has an extraordinary team that work together to diagnose and resolve these issues. They see this every day!! Very common problems. It's just another walk in the park for Mayo Transplant and Infectious Disease! You can have confidence that they will diagnose and resolve these issues for you. ❤
Hi Hello and I agree with your assessment. Mayo has done well managing my CMV like you I was negative and my donor positive. But with the similar treatment you had I too am at the <200 and been there over 2 years now. But got to watch the immusupprests very closely.
Hi @danab Thank you for the great info. Is Tacronlimis the only immune suppression drug that you take now? Nothing else? How long have you been on Tac only? (I am jealous. LOL) 😊
Hi @danab Thank you for the great info. Is Tacronlimis the only immune suppression drug that you take now? Nothing else? How long have you been on Tac only? (I am jealous. LOL) 😊
This all came to about when I was in the Hospital in Jun of 2019 so 2 plus years now. At first they wanted to try Sirolimus and we did for a few days in the hospital but it gave me mouth sores pretty bad so things seemed to go alright I was in the Hospital for 5 weeks solving the issues. I had another virus plus cdiff all at the same time but during that period on just Tacro I did fine so I guess they figured if I could go that long let's just leave it at 1. At first they were definitely not crazy about it.and I get tested almost every month sometimes more.
This all came to about when I was in the Hospital in Jun of 2019 so 2 plus years now. At first they wanted to try Sirolimus and we did for a few days in the hospital but it gave me mouth sores pretty bad so things seemed to go alright I was in the Hospital for 5 weeks solving the issues. I had another virus plus cdiff all at the same time but during that period on just Tacro I did fine so I guess they figured if I could go that long let's just leave it at 1. At first they were definitely not crazy about it.and I get tested almost every month sometimes more.
@danab It sounds like Tac only is getting the job done.
When something works well, it definitely makes sense to "Hold"! 😊
I am so happy to hear that things are going well now after the bumpy start.
Thank you so much for sharing your story with me!
Thank you all for your input. I was also CMV and BK negative, and my donor was positive. Mine came out positive five months after transplant. My CMV DNA PCR was 1.83, CMV DNA Viral Load PCR was 67.20. BK Virus was <500. Having no knowledge on how to interpret these numbers, I did some research but still no clear understanding of it. I'm not a Mayo patient. However, both my UCLA transplant nephrologist and regular nephrologist are working closely together on my cases. My regular nephrologist put me immediately on Valcyte 900 mg. 2x a day. The Cellcept (500 mg) was also stopped. However, my UCLA transplant nephrologist advised that the level was low and the meds should have not been adjusted. The Cellcept was put back on, and the Valcyte was stopped immediately. I did lab works two weeks in a row later, and both came out negative. I have labs again tomorrow and hoping to get new results. I also have an appointment at UCLA next week. You would think after the successful transplant surgery, you win the battle. It's frustrating that these issues are coming up months later which I understand are normal. These viruses are scary. It's like a no win-win situation. One is fighting against the other. You decrease the meds dosage to get rid of the viruses. On the other hand, rejection rate becomes higher. I'm aware that these will be ongoing issues so need to be really cautious. Although faced with these challenges, I'm thankful to receive a new kidney after four years of wait only and without dialysis. I'm also thankful to be a part of this supportive group, hear great advices and learn others' experiences. Thank you for your prayers and well wishes. I hope we are all able to win this fight.
Thank you all for your input. I was also CMV and BK negative, and my donor was positive. Mine came out positive five months after transplant. My CMV DNA PCR was 1.83, CMV DNA Viral Load PCR was 67.20. BK Virus was <500. Having no knowledge on how to interpret these numbers, I did some research but still no clear understanding of it. I'm not a Mayo patient. However, both my UCLA transplant nephrologist and regular nephrologist are working closely together on my cases. My regular nephrologist put me immediately on Valcyte 900 mg. 2x a day. The Cellcept (500 mg) was also stopped. However, my UCLA transplant nephrologist advised that the level was low and the meds should have not been adjusted. The Cellcept was put back on, and the Valcyte was stopped immediately. I did lab works two weeks in a row later, and both came out negative. I have labs again tomorrow and hoping to get new results. I also have an appointment at UCLA next week. You would think after the successful transplant surgery, you win the battle. It's frustrating that these issues are coming up months later which I understand are normal. These viruses are scary. It's like a no win-win situation. One is fighting against the other. You decrease the meds dosage to get rid of the viruses. On the other hand, rejection rate becomes higher. I'm aware that these will be ongoing issues so need to be really cautious. Although faced with these challenges, I'm thankful to receive a new kidney after four years of wait only and without dialysis. I'm also thankful to be a part of this supportive group, hear great advices and learn others' experiences. Thank you for your prayers and well wishes. I hope we are all able to win this fight.
Hi @leahdrose 😊 It sounds like your CMV and BK virus levels are now low enough and under control, which is great news. Are you taking 500mg Cellcept once a day or twice a day? When you say your "rejection rate is running high". What criteria or test are your doctors using to monitor your rejection rate? Is your creatinine elevated or is there another test that is giving them concern?
Hi @leahdrose 😊 It sounds like your CMV and BK virus levels are now low enough and under control, which is great news. Are you taking 500mg Cellcept once a day or twice a day? When you say your "rejection rate is running high". What criteria or test are your doctors using to monitor your rejection rate? Is your creatinine elevated or is there another test that is giving them concern?
@hello1234. I’m on Cellcept 500 mg. once a day. I’m trying to figure out what determines rejection rate. My last lab works showed lower Creatinine than the previous one. They ran a lot of new tests after I became CMV and BK positive. It must be from one of those tests. I will discuss with my doctor on my appointment next week.
@hello1234. I’m on Cellcept 500 mg. once a day. I’m trying to figure out what determines rejection rate. My last lab works showed lower Creatinine than the previous one. They ran a lot of new tests after I became CMV and BK positive. It must be from one of those tests. I will discuss with my doctor on my appointment next week.
Thank you @leahd 😊 Yes, after your doctor appointment next week please let me know what they are looking at to determine your "rejection rate" and how you are doing with everything.
I am a one year post kidney transplant patient and I am not aware of a rejection test or tests, but it sounds like something that could be a very valuable tool to help determine our immune suppression dosages. I recently had my one year protocol kidney biopsy and I know the biopsy can show signs of rejection, but I am curious if there are other tests that can show signs of rejection (in addition to our kidney function tests). Thank you so much for sharing your story and allowing me to learn, share, and be side-by-side with you on your journey. We have a lot in common (CMV, dosage adjustments, new kidney transplant patients, etc)!! ❤
Thank you @leahd 😊 Yes, after your doctor appointment next week please let me know what they are looking at to determine your "rejection rate" and how you are doing with everything.
I am a one year post kidney transplant patient and I am not aware of a rejection test or tests, but it sounds like something that could be a very valuable tool to help determine our immune suppression dosages. I recently had my one year protocol kidney biopsy and I know the biopsy can show signs of rejection, but I am curious if there are other tests that can show signs of rejection (in addition to our kidney function tests). Thank you so much for sharing your story and allowing me to learn, share, and be side-by-side with you on your journey. We have a lot in common (CMV, dosage adjustments, new kidney transplant patients, etc)!! ❤
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Hi Leah, yes CMV seems to be very common in transplant patients. Prayers also for a great out come. They did a similar thing with me with CMV and mine was a human version of Parvo B19. Luckily taking me off cellcept helped alot and now I'm only on Tacrolimus but monitored monthly. So far no issues with rejection and it's been 4 years this January.
Blessing
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2 ReactionsHi Hello and I agree with your assessment. Mayo has done well managing my CMV like you I was negative and my donor positive. But with the similar treatment you had I too am at the <200 and been there over 2 years now. But got to watch the immusupprests very closely.
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1 ReactionHi @danab Thank you for the great info. Is Tacronlimis the only immune suppression drug that you take now? Nothing else? How long have you been on Tac only? (I am jealous. LOL) 😊
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1 ReactionThis all came to about when I was in the Hospital in Jun of 2019 so 2 plus years now. At first they wanted to try Sirolimus and we did for a few days in the hospital but it gave me mouth sores pretty bad so things seemed to go alright I was in the Hospital for 5 weeks solving the issues. I had another virus plus cdiff all at the same time but during that period on just Tacro I did fine so I guess they figured if I could go that long let's just leave it at 1. At first they were definitely not crazy about it.and I get tested almost every month sometimes more.
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1 Reaction@danab It sounds like Tac only is getting the job done.
When something works well, it definitely makes sense to "Hold"! 😊
I am so happy to hear that things are going well now after the bumpy start.
Thank you so much for sharing your story with me!
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Like -
Helpful -
Hug
1 ReactionThank you all for your input. I was also CMV and BK negative, and my donor was positive. Mine came out positive five months after transplant. My CMV DNA PCR was 1.83, CMV DNA Viral Load PCR was 67.20. BK Virus was <500. Having no knowledge on how to interpret these numbers, I did some research but still no clear understanding of it. I'm not a Mayo patient. However, both my UCLA transplant nephrologist and regular nephrologist are working closely together on my cases. My regular nephrologist put me immediately on Valcyte 900 mg. 2x a day. The Cellcept (500 mg) was also stopped. However, my UCLA transplant nephrologist advised that the level was low and the meds should have not been adjusted. The Cellcept was put back on, and the Valcyte was stopped immediately. I did lab works two weeks in a row later, and both came out negative. I have labs again tomorrow and hoping to get new results. I also have an appointment at UCLA next week. You would think after the successful transplant surgery, you win the battle. It's frustrating that these issues are coming up months later which I understand are normal. These viruses are scary. It's like a no win-win situation. One is fighting against the other. You decrease the meds dosage to get rid of the viruses. On the other hand, rejection rate becomes higher. I'm aware that these will be ongoing issues so need to be really cautious. Although faced with these challenges, I'm thankful to receive a new kidney after four years of wait only and without dialysis. I'm also thankful to be a part of this supportive group, hear great advices and learn others' experiences. Thank you for your prayers and well wishes. I hope we are all able to win this fight.
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Helpful -
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3 ReactionsHi @leahdrose 😊 It sounds like your CMV and BK virus levels are now low enough and under control, which is great news. Are you taking 500mg Cellcept once a day or twice a day? When you say your "rejection rate is running high". What criteria or test are your doctors using to monitor your rejection rate? Is your creatinine elevated or is there another test that is giving them concern?
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1 Reaction@hello1234. I’m on Cellcept 500 mg. once a day. I’m trying to figure out what determines rejection rate. My last lab works showed lower Creatinine than the previous one. They ran a lot of new tests after I became CMV and BK positive. It must be from one of those tests. I will discuss with my doctor on my appointment next week.
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Helpful -
Hug
1 ReactionThank you @leahd 😊 Yes, after your doctor appointment next week please let me know what they are looking at to determine your "rejection rate" and how you are doing with everything.
I am a one year post kidney transplant patient and I am not aware of a rejection test or tests, but it sounds like something that could be a very valuable tool to help determine our immune suppression dosages. I recently had my one year protocol kidney biopsy and I know the biopsy can show signs of rejection, but I am curious if there are other tests that can show signs of rejection (in addition to our kidney function tests). Thank you so much for sharing your story and allowing me to learn, share, and be side-by-side with you on your journey. We have a lot in common (CMV, dosage adjustments, new kidney transplant patients, etc)!! ❤
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2 Reactions@leahd I forgot to ask you what your current creatinine and BUN numbers are? It sounds like you are seeing improvement, which is a good sign.