As some of you likely recall, I’ve been grappling with recurring CMV for many months now. That was preceded by many months with dangerously low white blood cell count. I was CMV- with a CMV+ deceased donor kidney. The kidney continues to work well.
Low WBC count: I initially received Neupogen injections for this. I did experience some pretty intense side effects, e.g., lots and lots of bone and joint pain along with other side effects. I haven’t had a Neupogen injection since July 29, 2023. My WBC count is now typically in the normal range.
CMV: I’m in my fourth recurrence with CMV right now. The first round was the worst. It took 5 weeks to pull my CMV to target (<35). It only remained at target for 2 weeks once the anti-viral medication, Valcyte, was discontinued. As with Neupogen, I’ve had a lot of difficulty with Valcyte. The 2nd & 3rd recurrences followed the same basic pattern with the exception that I was only on Valcyte 3 weeks each time. They were monitoring this weekly by this point so caught the CMV with a much lower viral load.
So, the pattern has been 2 weeks off Valcyte with CMV at target. Third week off Valcyte CMV increases but doesn’t meet the threshold to restart Valcyte. CMV viral load doubles every 1.5 days like clockwork. Fourth week off Valcyte CMV exceeds threshold to start Valcyte. The cycle then repeats again following exactly the same pattern. Of course my problems with Valcyte have increased with each new round.
My nephrologist had referred me to an infectious disease specialist during the third recurrence. This specialist pulled me off Valcyte and Myfortic immediately and talked about using maribavir instead of Valcyte. (My nephrologist isn’t supportive of maribavir primarily because it’s a newer medication it seems.) While off Valcyte and Myfortic two things happened: within 3 days my CMV data went back to “not detected” and my WBC count elevated into the high range. Particularly the lymphocytes which I’ve been told specifically attack viruses like CMV.
My nephrologist was very upset by what the infectious disease specialist did and immediately restarted myfortic telling me that what was done was very dangerous for the kidney. She also, again, told me why she wasn’t in favor of maribavir. In short, she doesn’t agree with the specialist she referred me to. It was clear to me as I left that appointment that these two doctors aren’t working together. I don’t think they had conferred about my case.
So now I’m in my fourth recurrence of CMV. When I got the CMV data last Friday I called the transplant center and asked to talk with the nephrologist. I then asked her if we could try something different for treatment as what we’ve been doing isn’t resolving the CMV; it’s only pulling it down but then it doesn’t stay down more than 2 weeks. I also said that I’d noted that the viral load doubles every 1.5 days like clockwork, it’s very predictable. I asked her to meet with the infectious disease specialist with whom I had a followup appoint the next Monday before that appointment (this past Monday). I told her that I’d prefer to have the two of them at the appointment together but knew this was short notice. The end of the conversation led her to increase my Prograf by .5mg daily and discontinue Myfortic (I was only taking 180mg daily) for the time being.
I’ll be a week into the modified treatment plan tomorrow evening. The infectious disease doctor made it clear that if or when I need an anti-viral medication again we will be using maribavir. She also guesstimated that it will be a minimum of 6 months before they have this in check. It’s already been close to 6 months… It was clear that she and the nephrologist had conferred before the appointment. That’s a start. However, as I heard another 6 months I told her that I need to see some definitive improvement in this data in 3-4 months. (That’s 12-16 lab draws.) I said that my next step will be to request seeking outside consults for both transplant nephrologist and infectious disease specialist. I told her I had some people in mind but would be open to their preferences on this as well. I said the purpose would simply be getting a fresh set of eyes looking at the data so they can work together to brainstorm additional treatment options. I told her I didn’t want to blindside her or my nephrologist with this. I also told her that it was my hope that if she and my nephrologist will work together on my case that it won’t be necessary to seek outside consults…
All my labs for this week are back except the CMV and BK. My Tacrolymous level is good. My WBC count data is good including the lymphocytes which were in the normal range. I’m trying to stay calm as I await the CMV and BK data….
I’m somewhat horrified with myself for taking the stance I did last Friday and again on Monday. However, this needs to be addressed effectively. I’m truly exhausted and so very sick of feeling sick. As I told them both, I need a treatment plan that gives me a fighting chance of feeling well enough to exercise daily etc. I also need this horrific number of labs and doctors’ appointments to calm down. Logistically it’s a nightmare. That adds so much stress in addition to that I seem to be experiencing related to getting this CMV in check as well as just feeling unwell so much of the time. It literally seems unending. Six more months minimum? It sounds like a jail sentence at this point.
Okey, by far the longest post I’ve ever made so I understand if you give up reading before you reach the end. I’m hopeful that I’ll hear from others who have run into issues with CMV not responding well to treatment. I’d appreciate hearing your stories.
Jayhawker & Izzy
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Thinking of you and sending you prayers. When I was reading your post, I was thinking of those out there that don't advocate for themselves. Yes we all have to do what we think is right for us!!
Prayers, positive thoughts, good wishes, and everything possible that can make things happen for you. Congratulations on speaking up for yourself. There seems to be an unbelievable lack of compassion on the part of these doctors. Don't they hear how you're suffering? They're both so invested in their own opinions that they can't listen to you or to each other. Wow, YOU may have to make decisions as to whether you want to try something new or else get different people on board. Try to remember it's your body and life and that puts you in charge. Don't stop asserting yourself and advocating. Their role is to advise you if they can put their egos aside.
Bravo Jayhawker for standing up for yourself. We are so afraid of confronting our doctors. They are not GODs, ( although some think they are) You know your body am curious, did you know the transplanted organ was CMV positive at the time of transplant?
I'll be think of you and sending you good thoughts and healing energy.
No, they didn’t tell me that before the transplant that I can recall. Even if they had they likely would have encouraged me to move forward with it because CMV- donor kidneys are hard to find and they view CMV as treatable.
Approximately 50% of adults age 40 have CMV. The prevalence increases in older adults. Consequently, many transplant recipients are CMV+ and of those who are CMV- who receive a CMV+ kidney, by far the majority are treatable with only one or possibly two rounds of CMV flare-ups.
You’ll know whether you are CMV+ as they do your transplant evaluation. Plus when you are placed on the active list you’ll have monthly labs more than likely until the transplant occurs. Those labs will include CMV data. I had about three years of monthly labs consistently showing me to be CMV- so there is no doubt this has come from my donor kidney which was CMV+.
Yikes..... you know this journey is much more than I even could imaging. I had no idea how difficult dialysis is and now, I am really worried about transplant. So many people are now facing these treatments and yet they have yet to find a truly safe and easy way to help CKD patients. But yet...... we have Viagra......
Just got my BK and CMV results. BK still not detected. Good news. CMV has risen by 48. So the modified treatment plan has kept it from doubling every 1.5 days since last week; however, it has continued to elevate some from 74 to 122.
The infectious disease specialist said she would monitor my CMV data with th this week’s labs and get back in touch with me. Hopefully I’ll hear from her today or next Monday.
I also had multiple bouts of CMV, but nothing like your experience. Valcyte worked for me.
I also see red flags when my providers won't work together. I can't imagine a Dr taking someone off Myfortic with out consulting their nephrologist.
I think you did the right thing. I left (fired) two nephrologists before I found the current practice I am with now. I am on my second nephrologist with this practice, but that is because the first moved back to the lower 48 not because I felt he put me at risk. I am not suggesting you quit either of these Dr's, but you do need to advocate for yourself and sometimes that feels dramatic.
I’m so sorry you’re going through this! It seems the first year of transplant sure has its ups and downs. Just when I was starting to feel a a bit like my pre-kidney failure self, I’m now struggling with low wbc which started 3 weeks ago after the covid vaccine. Ugh
I’m so impressed with the way you advocated for yourself! It’s a good reminder that the Doctors we hire work for us and they are only human and have many patients but we only have one life. It’s great that Cindy is going strong. I hope the cmv goes away for good as you head towards your one year anniversary.
If you are already CMV+ you don’t need to be concerned about the status of the donor kidney with regard to CMV. What I’ve learned would suggest that you may have a CMV flare up after the transplant but I gather that because your body already recognizes it and keeps it in check, the flare up is supposed to be fairly easy to manage.
That being said, I’d definitely have a serious talk with the transplant team about this. I’d want to know how they’ll monitor for CMV recurrence post transplant as well as what they plan for treatment should it recur. Finally, I’d ask them how likely it is to recur. They know the data. They need to share it IMHO so you have some awareness of what to expect.
Tacrolimus, MPS(Myfortic) and Steroid are usual medicines. other immuno suppresive medicines are Cyclosporine, Azathioprine, Everolimus, Sirolimus and Betalacept
Thank you. They still have me on Prograf, Myfortic, and prednisone at this point; although, the nephrologist discontinued the low dose of Myfortic last Friday and increased Prograf some to try a different approach to CMV management.
I’ll, again, ask her what other medication options we’ve got for anti-rejection. Thus far she hasn’t been terribly forthcoming. Of course I’m pondering whether a different medication or two for anti-rejection would help my WBCs deal with CMV. But I honestly don’t know. This stuff is very complicated.
We have to advocate for ourselves. It is frustrating to have to do so as much with the transplant and nephrologist folks. You also have to be alert and proactive with other doctors since they are not as familiar with the restrictions that us transplanted people have. Good for you that you are looking out for yourself. Good luck on knocking down the CMV for good.
You are right to stand up for yourself! Keep strong, I know those labs are hard. I really admire your strength in the face of what you are going through. I don’t think I could do it. I want you to know that I’m praying for you and I have my whole group at church praying for you as well.
I’m sorry to hear you are struggling with this. I was transplanted June 11, 2023 and it’s so much harder than I thought that at times I have regretted having the transplant. It has been total hell really. Doctors not sympathetic. Finally a PA told me,” Oh yes the drugs are hard for everyone!” I was so happy she told me. I didn’t realize it wasn’t just me. Getting a transplant is like getting a new disease that needs to be treated. I was CMV- and accepted a CMV+ kiddney, and was also EBV- and donor was EBV + (what they call a mismatch). Almost no one is EBV -, only about 10% of the population. The BK Virus popped up after about 2 months. EBV emerged 2 weeks ago. They are testing me weekly at this point for CMV.
No one prepared me in the least how hard this would be!
I get that your nephrologist said consult Infectious Disease, but I would never make any medication changes before consulting my nephrologist. Kidney is # 1 priority. If my cardiologist wants to change a BP med, I run it by my nephrologist first. Seriously, everything. No way in hell would I let someone change my immunosuppressant drugs. I get that you’re frustrated and wanted to do something different.
I was taking valcyte just fine until for whatever reasons, my white count dropped to 1.06 which is a medical emergency and I had to be hospitalized. I had just changed from Cellcept to Myfortic two weeks before which I find suspicious but they don’t. I got horrible mouth sores and had to switch from valcyte to acyclovir. It hurt so bad I had trouble eating or drinking and ended up in the hospital again for dehydration.
I have been told by two doctors that sirolimus and everolimus “are not well tolerated” and 25% of all patients who take them get mouth sores. I’m reluctant to try those but for that reason because I have some brain fog that I blame on the cyclosporin, but was told by a doctor this week it might be from my beta blocker. I couldn’t tolerate Tacrolimus it made me dizzy, really bad tremors, and really kind of demented, repeatedly asking the same things every ten minutes, couldn’t reason well.
Belatacepot was designed specifically for kidney transplants patients not all transplant patients. However they won’t give it to you if you are EBV - because it increases your risk of post- transplant cancer - the PTLD KIND. So they would not give it to me. Now that I was briefly positive for it, I want to see if it is possible they’d give it to me. Because multiple studies have been done and guess what. After following patients after 5 years, they found your kidney function actually increases with beltacept, and decreases with cyclosporin.
Belatacept is, very important to note, a monthly infusion. I haven’t figured out yet why more people aren’t on it. It may be more expensive and insurance discourages it, or that people aren’t really aware of it, or don’t want a monthly infusion, or it may not be carried by all hospitals etc and so it’s too far to travel for people to get to it.
The fact is, no one gets dialysis unless they’ve done it, and they don’t get how hard transplant is either. They do not have a clue. Not at all.
I call myself a professional patient. Being sick is a full time job.
I attend two support groups- via zoom. One is a Renal Support group (rsnhope.org) that includes people from Stage 2 to dialysis to transplant. One is a Transplant Support group and I look forward to that because it is the. one hour a week where I can talk with other people who understand what I’m going through.
I will be honest I find it infuriating when anyone tells me to be my own advocate. If I wasn’t my own advocate, I wouldn’t have this kidney and honestly I think I would have died years ago. They have no idea the time and energy I already spend fighting for my health and sanity. My previous nephrologist told me I wouldn’t need dialysis for years and years and said I should not get on the transplant list ( I was at GFR 14). Fortunately I listened to a nurse who said get on the transplant list as soon as you can, which I did. I was on dialysis less than a year later. Suprise!!
I’m tired of all the blood draws, doctor appointments, medical bills, and not really having a life. I really miss having a better life before my kidneys failed and feeling energetic and healthy. I miss being able to work out. However I believe in the quote “The best is yet to be” by Robert Browning. Also “When you’re going through hell…keep going” by Winston Churchill, and finally “Worry is like a rocking chair. It will give you something to do, but you won’t get you anywhere” -Proverb. All the doctors insist ”It will get better.” I just choose to believe it. I’m really sorry to hear you’re struggling with this CMV isssue. It sucks. All we can do is the best we can with what we’ve got. Transplant isn’t the magical cure, It’s a treatment that’s better than dialysis (for most). So…hang in there!
Like i mentioned before been on marivibar now for 5 weeks and almost no side effects ,viral loads dropped from 22000,to last week 2700 ,if you read all the studies it is much better then any other but it is for treatment not maintenance for that you need something else but i highly recommend the marivibar.Btw my lymphctyes always below even before transplant but wbc and hemoglobin good.
I have a appointment with them next tuesday but before we were discussing letermivir as maintenance as i resistant to the vaganclovir but we have to check if we can get it here.
I am sorry to hear about your CMV struggle. Brings back a lot of memories. I am now 7+ years with my new kidney and liver. I learned the hard way about my donor being CMV+ and myself being CMV-. Even with this knowledge for some reason my doctors took me off my CMV preventative meds early just months after my transplant. I was unaware of this relationship at the time and just happy to be on one less pill!
Of course within weeks I was fighting CMV and it continued for about 10 months. At one point I had a port and an IV at home for the meds. I became resistant to the first medication which I believe was Gancyclovir. I am fortunate I was being treated by the Cleveland Clinic and was immediately under the care of a great doc in infectious disease who worked closely with my kidney team. As we progressed through the virus coming back a couple of times, I ended up on Foscarnet which can be bad for your kidney but, it was my last option. They reduced my MMF and actually took me off of it briefly to kick the CMV in the xxx. My creatinine did start rising and I had elevated protein. I am now taking lisinopril to keep the protein at bay. I had to have a biopsy to make sure all was good. My creatinine came back down and my protein is normal now.
I get tested with my regular labs to make sure it continues to be gone. My ID doctor was thorough and tested for my antibodies to CMV. It may take time but you will get there. Don't feel bad about being your own advocate. That is the biggest lesson I have learned, you are your best advocate. You have every right to ask questions and demand answers.
We have to be careful with any virus. Immunocompromised people are mutation factories! You are right to be concerned about it repeatedly returning. Your doctor's should be working together and thinking out of the box to kick it once and for all!
I forgot to add my CMV did start to rise again at the end but because they had taken me off the MMF My own immune system was able to fight back and I kicked it. They kept extremely close eye on all of my numbers and it was a balancing act at the end.
I’ve heard similar stories from a few others in this forum. I suspected that the infectious disease specialist recommended taking me off Myfortic along with discontinuing Valcyte for similar reasons. She has said that if it becomes necessary to put me back on an anti-viral medication again, that medication will not be Valcyte.
When I discontinued Valcyte and also stopped Myfortic, my CMV decreased to not detected in 4 days. Of course my WBC count elevated and even more concerning my lymphocytes skyrocketed. It was the significant increase in my lymphocytes that was the real concern for my transplant nephrologist. That’s understandable.
However, as CMV came back a fourth time a few weeks ago and I basically insisted that we respond differently so as not to create the same very predictable and ineffectual cycle, my transplant nephrologist pulled me off Myfortic while increasing my Tacrolymous by .5mg daily.
I’ve been following this modified treatment plan for about 2 weeks at this point. The first week in the modified plan showed an increase of CMV by about half as compared with doubling ever 1.5 days throughout the first week in each of the three preceding rounds of CMV. That was a noticeable improvement.
Labs this past Wednesday were the second labs drawn while following the modified treatment plan. My CMV viral load decreased by half from the labs the first week. My WBC count is holding steady at 6.78-7.0 with my lymphocytes in the normal range during the first week and increasing to slightly elevated this past Wednesday.
I’ll have labs again this coming Wednesday and will see the transplant nephrologist on Thursday. I’ll be curious to hear how the nephrologist interprets all of this. As I said to her on Fri, Oct 13th (yes, Fri the 13th), we learned some things when the infectious disease doctor pulled me off Valcyte and Myfortic. First my WBCs recognize CMV even as it continues to mutate. Second, my WBCs effectively combat CMV leading to not detected lab results when I’m not taking Myfortic. Admittedly my lymphocytes elevated too much. Then I said that my question is what can be done to keep the lymphocytes, in reasonable rage while setting the stage for my WBCs to do their job combatting CMV? She then put the modified treatment plan in place.
This modified treatment plan is likely not the long term plan as it would be dangerous at 1 year post transplant to rely upon two anti-rejection meds only. But I’m hoping it has moved us in a good direction.
I plan to ask her about alternate Meds both for anti-rejection and to keep CMV in check once we get it there. I’m not sure what’s possible but will pose the questions.
This is exhausting and stressful. I’m so tired of feeling poorly. This has also been extremely difficult to navigate while living alone. My neighbors have helped as they can, but this would truly be so much easier if I had family or a significant other… Well, it is what it is.
I appreciate your response. It gives me some hope that I’ll get past this.
As I have mentioned in a few other posts, I’m currently working through my fourth CMV flare-up. I urged my nephrologist to try a different treatment approach this time as the other had pulled my CMV into target range but had not promoted maintenance in target range for more than 2 weeks after the antiviral medication discontinuation.
Thankfully, she tried a modified treatment plan. She has temporarily discontinued Myfortic and has not prescribed an antiviral. The goal is to see if my body can pull my CMV down using my own immune system.
My CMV data this time has been significantly better: 74, 122, 63 over the past three weeks. My lymphocytes have elevated some but my nephrologist isn’t overly concerned about that at this point.
They just ran a CMV iSIGHT T-Cell Immunity test. That test evaluates my body’s ability to generate two types of T cells critical to combating CMV (CD4 & CD8). The results of that test showed that my body can produce both types of T cells so should be able to effectively respond to CMV. Of course, I realize that this is complex and there may be other issues inhibiting my body’s response to CMV. But this is some good news.
My nephrologist was noticeably more confident in my appointment this past Thurs. Once she and the infectious disease specialist began working together rather than contradicting one another, she seems to be much more comfortable deferring to the infectious disease specialist for CMV treatment guidance.
Finally, my renal panel data has also improved significantly this past week. My creatinine is .78 with 90.7 eGFR. This was an improvement from creatinine of approximately .95 snd eGFR approximately 63.
So, maybe, just maybe, this CMV situation will resolve over the next few months. Regardless, it is so very helpful that these two doctors are no longer fighting one another. While I didn’t enjoy initiating candid conversations with both of them, it was needed. At least I now have confidence that they are focused on treating my CMV. Hopefully that will solve my CMV issues.
I was getting cmv under control with the marbivar was down to 2700 after 10 weeks,so next bloodwork i thought great will be gone. Nope jumped to 98000!I thought gotta be lab error,so transplant nurse suggested doing a repeat the next day,waited a very stressful week for results 298000! Wtf, and crickets from the transplant department,i hate them they are useless.
I’m headed in for my regular weekly labs again this morning. It’s always stressful. I realize that we need to see several more weeks with my CMV either at target <35 or “not detected.”
At this point it’s been there for three consecutive weeks. This is the first time that’s happened. But we’ve certainly got a way to go before we’ll know if we’re really out of the woods with this CMV issue. It’s tense.
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