I’m nearly 4 1/2 months post transplant. My kidney data indicates that the kidney is doing well, I.e., most recent data as of yesterday creatinine .92 with eGFR of 67.5 Most of the other data also looks very good.
However, my WBC count is now down to 1.4 They have tried decreasing the dose of myfortic and last week an infusion to bring my WBC count up. It went down after the infusion injection. Yesterday they called and told me not to take Val yet. I discontinued that this morning as I’d already taken the daily dose before they called yesterday.
my data does show CMV at 1.1 which I gather indicates that I have or have had CMV. Of course, I’ll talk with all of this with my doc in my appointment next Tues, March 21. But I’m stressing out about this. So I decided to post to see if anyone else has run into this. If so, please tell me it’s treatable. I don’t see how I survive very long with WBC of 1.4 or even lower. I’d basically have to quarantine myself to try to avoid exposure to everything… (Yes, I’m stressing out about all of this. Ugh)
Jayhawker
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Early on I also had low WBC. For me it turned out to CMV, since I never had it when younger. Told me that the low WBC usually means a virus. That being said, a virus can be really bad those first couple of years affecting . CMV can cause you to lose your transplant. They put me in the hospital with IV antibiotics. Turned me around and now over 23+ years later!
Please take care of yourself and do everything the docs tell you.
I tested negative for CMV consistently before transplant and the first week post transplant. My CMV data is now positive coming in at 1.0. They have me on valcyte I believe to deal with CMV. But I guess they think the valcyte is what is lowering my WBC count as they just told me to discontinue it. Thankfully I’ve got an appointment in Tues so won’t have to wait long to ask questions. I do wonder if this CMV data indicating I’m now positive has anything to do with all of this. I’m not presenting symptoms, that I’m aware of for CMV right now. Of course I’m doing exactly what they tell me as well as contacting them when I experience anything new. This stuff is complicated.
Good to know you have done well for so long following your CMV episode. Honestly, the rest of my data looks great! My eGFR is now up to 67.5. My other data looks good as well.
yes, I have my questions written out too. I just double-checked my labs as posted in my patient portal. The numbers the nurse gave me via the phone are consistently reported as MCV data so I’m wondering if she reversed the letters—or I may have since this was verbal rather than in writing.
Frankly, it makes sense that the letters were reversed because they had me on a very low dose of Valcyte (only 450mg daily as compared with the normal dose of 900mg daily). They said it was a low dose to prevent bacterial infection in one of my first appointments. They’ve also said in several appointments that I’m low risk for infections … Further, if I have active CMV it would need to be under treatment while my WNC is sooo low or the CMV will really get out of hand, thus it seems very odd that they’d remove that medication without a replacement Med if i have CMV.
St this point, having thoroughly reviewed my testing data, I’m optimistic that she was talking about MCV and I either misheard her or she reversed the letters. One thing that is clear is that my WBC vount is extremely low. They’re focused on that. Something has to be causing this as it was fine until about 4 weeks ago when it began dropping,
Regardless, you are right. Tuesday can’t come soon enough!
Interesting that you mentioned MCV, because that has to do with your red blood cells & their size. I have been on Myfortic & Neoral since day one. My Myfortic is making my red blood cells get too big. So my MCV & MCH values are higher than normal. Last labs showed that they went down so are just watching. If they consistently are high, I would have to go see a hematologist.
Ya, that is weird that they had you stop your valcyte, if you have CMV.
Let me know what happens at your appt on Tuesday. I care...
I thought it was weird to discontinue valcyte if I have CMV too. That’s what had me really concerned. They’ve been running labs for BK and CMV once a month. Those have consistently come in as negative or no evidence present. They’ve also checked snx levels and so forth. There was a sudden drop in my WBC count between Jan 24 and Feb 8. That was about 2 months post transplant.
Well, it’s a mystery to me. It’s clear they’ve been quietly checking all of this over the past month. I’m the sort of patient who wants to know everything that’s going on. I’ll let them know that tomorrow. I actually stress out less when I know everything than when I’m left in the dark.
It’s possible I’ve got done other infection but seems unlikely as my temperature has consistently been normal when I check it daily since the transplant. Of vourse they test for UTI regularly. Plus I’m on a medication to minimize occurrence of UTIs.
Hey Jayhawker - I had CMV after transplant…got it from my donor as I never had it before. I just looked up my labs from that time and CMV measured > 10 and then was negative…my WBC was 4-5 at that time. It was during that first year after transplant. I cannot recall how it was treated and I had no symptoms. I’m guessing this is not super helpful.
What I really wanted to say is that it sounds like your transplant team is on this. They are working fast to reduce potential culprits like myfortic and will figure it out.
Please keep us posted. AND Congrats on that terrific creatinine level!
yes, the team is on this. I, too, was consistently CMV negative pre-transplant so this has likely come from the donor organ. As I just mentioned, I don’t think I’m experiencing any symptoms related to V. I’m just thankful to hear that this can be resolved and life will carry onward. The kidney really is doing extremely well. My GFR with Fri labs, a day ago, came in at 67.5. Just incredible.
What is CMV? I had a low white blood cell count at 5 months post transplant but the lower Myfortic seemed to bring it back up. I pray you get the help you need. Yes, this post transplant process can be complicated to manage. Now, I am having difficulty stabilizing my Tacrolimus levels as they go too low and then too high. Take care, BB
the first thing they tried with me was decreasing the Myfortic some. My WBC count lowered more. Then an infusion last week Monday. Again mu WVC count was even lower after the infusion. That’s when they called me and told me to stop valcyte. One more day til my appointment with them. Hoping to learn more about what they’ve ruled out and what they think is causing this.
Yes, it is treatable. I was down to 1.5. My hematologist has me giving myself neurogen injections twice a week. I am up to 4.3 after 4 months of treatment. Still low but my hematologist said this is okay. I see her or her nurse practitioner once per month. I observe all Covid, flu restrictions, do not expose myself to groups, and stay very careful.
First I saw my preference of the transplant nephrologists this afternoon. He just has a better handle on my data and so forth. I was very glad he was in clinic today!
He immediately focused on my medications. Lots of detail…when did I start this medication and so forth. He said that they normally leave patients on valcyte for 6 months but he’s going to pull me off it now. I may have to go back on it later but it’s one of three meds he believes are causing my low WBC count. He’s also continuing the lower dose of Myfortic. Finally, he’s shifting me away from Bactrim Spectra to a different Med. Apparently a lot of the symptoms that I’ve been experiencing over the past two weeks are associated with Bactrim.
And finally, I have consistently (both pre and post transplant) as showing no evidence of CMV and post transplant of BK. Living alone as I do and not being sexually active places me at lower risk of picking these up, apparently.
They administered another injection to stimulate my WBC production this afternoon. I had this injection last Monday with no improvement—my data actually got worse, I’m addition to the changes in medication I’ll get labs done once a week and then go to the main hospital gir the infusion (injection) later in the week if my labs indicate it’s needed.
He didn’t need to see me back in clinic for 3 weeks. He’s on top of the situation but clearly not extremely concerned. Wet re going to give this new treatment plan time to work…
At this point I’m guardedly optimistic. I’m sooooo glad he’s the one I saw today!
thanks! I realize this will be a work in progress, but what Dr Awad did today makes sense. What the other two nephrologists have done over the past 6 weeks just really has t made much sense.
I spent a huge amount of time studying my data over the weekend. I had come to the conclusion that it likely was neither CMV or BK simply based on my testing data results. But I wasn’t sure about other possible infections etc. However, I’ve had absolutely no fevers since the transplant or any other indication that I might have an infection of some sort. Plus my renal panel data continues to improve—it looks very good. You’d think there would be some indication of a virus etc with my basic renal function as well.
Anyway, he put a clear treatment plant in place and we’re moving forward. 🤞 that this treatment plan works. If not we’ll have to go back to the drawing board and try again.
Looks like you're taking care of business, as always! Keep providing amazing examples like this one of how to stay on top of whatever is happening to us.
They posted my data from yesterday afternoon this morning.
Thankfully my WNC count came in at 1.89. It was 1.42 last Friday. So discontinuing Valcyte as of last Saturday along with the first infusion injection clearly helped my data. Hopefully continuation of that treatment protocol as well as discontinuing bactrim spectrum and another infusion administered yesterday will result in more improvement with my labs next Monday.
I’m hoping for WBC around 2.5 by Monday. It needs to be at least 4.5 to be at the bottom of the normal range; although, they had targeted 5.0 to 5.5 as my target range. My WVC data was consistently in their target range until the Feb 8, 2023, lab draw. We’ve got a ways to go to get back there. But at least the labs yesterday showed improvement. All other labs since Feb 8th have shown ongoing deterioration.
Overall, I’m encouraged. But we need several data points improving to establish a shift in the data trend.
Jayhawker - Another good point is that you are 4.5 months post-tx and coming off valcyte and bactrim is likely less of a big deal as it would be if you were only a couple of months post transplant. I’m not a doctor, of course…just my own experience as I had issues with bactrim very early on. I was put on Mepron (AKA yellow paint) for a couple/few months because I was taken off Bactrim so early. We are anxious to hear those labs results, so please keep us posted. D
Dr Awad said he may prescribe a different Med to replace the bactrim. They had already moved me from bactrim to atovquone (not sure I’m spelling that right). But I am apparently having more problems on the second option than Bactria. At this transplant center they typically have patients on bactrim for 12 months. So I do expect a replacement Med. I just hope I won’t have similar problems with the replacement. Regardless, il certainly try it and do what they say.
He talked about the number of days I’ve been on valcyte. They target 6 months (180 days) for patients to take valcyte. I’ve been on valcyte for 122 days. He said hey are likely not to put me back on it. That script is due for a refill the first week of April. He told me to hold off on getting it refilled.
Anyway, my hope is that I’m far enough along to be able to safely discontinue valcyte at this point. I was on a very low dose. Typically people take 4 tables (450mg each) a day for a total of 1800mg daily. My treatment plan had me taking only 450mg (1 tab) daily. That’s all I’ve ever taken of valcyte. So, hopefully, Dr Awad’s thinking on discontinuation of valcyte is accurate.
Of course we’ll monitor everything with weekly labs. I’m tracking data at home too at their request. So, if a problem with infection arises, we should catch it immediately. 🤞
Yes! You have a great doctor. Those transplant specialists know exactly how to handle matters. So stay above your worries. They have a ton of experience.
update: no replacement Med for bactrim. They tried another option which also lowered my WBC count. So from this point forward no bactrim (to protect against pneumonia) or valcyte (to protect against CMV).
They would have stopped the valcyte after 6 months. I’m five months post-transplant now. I had no evidence of CMV pre-transplant. The donor kidney had no evidence of CMV. To date my CMV labs show no evidence of CMC. So they think I’m low risk for CMV. They’ll just continue close monitoring.
They discontinue bactrim at 12 months. So, that’s the greater concern. However, I’ll continue to wear a mask and hand wash/sanitize (with sanitizer when away from running water) regularly. They’ll watch closely for signs of anything that could progress into pneumonia. Of course, I’ll take precautions as well.
My BK labs consistently come back showing no evidence of BK.
Meanwhile the neupogen injections have finally led to positive WBC data. Last Monday my WBC count had bounced from 2.02 to 3.95. 4.0 is the bottom of the normal range with this hospital’s labs. I had yet another injection last Thursday. More labs this morning. I’ll get the results tomorrow. 🤞 that my WBC will be close to or slightly above 5.0. Of course, they don’t want it much higher than 5.0 so we’re not really wanting another big bounce at this point.
I’ve experienced some pretty intense bone pain as a side effect of neupogen. I’m hoping I’m nearing the end of those injections.Vice friends who had to have neupogen while undergoing chemo/radiation with cancer. They talked about bone pain. Of course we were supportive and did what we could to help them… But, wow, now that I’ve experienced this; well, it’s definitely not fun! I’m hopeful that I’m nearing the end if this treatment, (I do know some have to have these injections for the duration of the life of the transplant. I am hoping I’m not one of them.)
Through all of this my renal panel data has remained strong and stable. My new kidney (named Cindy after my lifelong friend who talked me into getting evaluated for a transplant and has since developed dementia) consistently tests creatinine .92 with eGFR 70. Potassium and all are great! It’s just incredible!!!
Those are amazing numbers, Jayhawker. You have a wonderful match. My hubby's labs came in today - eGFR in 40s and creatinine is 1.7. They consistently hover around that and his team is unconcerned since the match wasn't perfect. His WBC and RBC counts are also flagged, apparently just outside normal limits. His team isn't worried about that either. Keep on keeping on, Jayhawker!
I know! I feel so very thankful for how well the donor kidney is working. Truly, the only hiccup I’ve experienced with all of this was the sudden drop in my WBC count. That was apparently medication-related.
The nurse at the infusion center seemed to think she might not see me in for another injection after last Thursday. I’m hoping she’s right! Regardless, the injections are working. This is expected to resolve.
Just saw my labs results from yesterday morning. My WBC increased from 3.95 to 5.20!! This is within the target range they set for my WBC post transplant; the lower end of the average range.
Hopefully no neupogen injection this week. Then we’ll likely need more weekly labs for awhile to determine if my WBC will stay in this range as it had until early Feb.
I’m sure I’ll get a call from the transplant center nurse today. I have an appt at the transplant center on Thurs so will be able to talk with them about all of this more during that appt.
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