kidney (I’ve named Cindy): Doing very well (creatinine .81, eGFR 78)
Struggles: very low white blood cell count from Feb through July & CMV from May to date
CMV: 4 flare-ups to date
I was referred out to see an infectious disease specialist to help with CMV treatment about 3 months ago. She pulled me off Valcyte (antiviral medication for CMV) and Myfortic during the first visit. This was to see if my immune system could pull CMV into target range on its own. Within 4 days my CMV tested “not detected” indicating that my WBCs both recognized CMV and effectively combatted it.
My transplant nephrologist was clearly not pleased with what the infectious disease doctor did. However, the kidney has tested better consistently since that was done.
When my fourth CMV flare-up began 5 weeks ago, I contacted my transplant nephrologist and said that the prior treatments (which had been tried three times) had not successfully dealt with my CMV so, in my view, it was time to try something else.
Treatment plan for current CMV flare-up:
Temporarily discontinue Myfortic
Increase Prograf by .5 mg
No antiviral medication (Valcyte)
How has it gone?
Week 1: CMV 74; WBC 9.63
Week 2: CMV 122; WBC 6.76
Week 3: CMV 63; WBC 6.72
Week 4: CMV <35; WBC 5.89
Week 5: CMV <35; WBC 4.86
The new treatment plan has produced much lower CMV data and led to a faster resolution (defined by the nephrologist as two consecutive weeks at <35).
In the past, it’s been the third week following discontinuation of antiviral medication when the CMV flares up again. Next week’s labs will give us an idea as to whether my CMV will stay in tsrget range longer this time.
The decrease in WBC count over the past two weeks is somewhat concerning. But, overall, this treatment plan has seemed to be more effective.
They are currently running a few other tests. Once we have the results from these additional tests, we’ll hopefully get the CMV in check, I hope, for the foreseeable future.
Jayhawker
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That is such promising news, Jayhawker🙏 and thank you for sharing your journey through this. Sending you best wishes for speedy and full recovery. You are almost there🤞🙏
Yes, I’m actually taking B12 and Folalic acid supplements as well as eating a lot of boneless, skinless chicken breasts and tuna. Unfortunately I don’t like salmon. I also drink a protein shake daily that has zinc and so forth specifically to boost my immune system. The transplant dietician is guiding all of this. Also eating roasted vegetables. Like most transplant recipients I’m nit eating any uncooked vegetables to minimize introducing bacteria into my system.
Did you mention in one of your earlier posts that you have worked as a rehabilitation counselor? The reason that caught my attention is because the federal grant I’m finishing directing on July 3, 2034, has provided autism training for rehabilitation counselors. We’ve worked with rehab counselors from nearly every state in the nation. It’s been wonderful to see what’s happening with adult services across the nation.
I have a PhD in Clinical Psychology. I worked 25+ years at the VA hospital in Gainesville with a joint appointment at the University of Florida where there, I worked primarily training our psych and medical students. When I retired from these careers, I worked in private practice primarily doing psych evaluations for State Vocational Rehabilitation counselors well as for the State Child Protection Team. While I thoroughly enjoyed all my varied work, I especially enjoyed working with the Vocational Counselors. It was such a joy to help people remove obstacles so they get become employed. Your research about training counselors to work with autism sounds wonderful. From my experience, it is an area that needs exploration and help
I'm retired now and although I miss those work laden days, it sure is nice just to sit outside or get together with friends and family.
I should have posted this in a private text but thought about it too late. So, I apologize to the members in the forum
It's lovely to hear about your career! It's always nice to know that people with serious health can have very interesting and productive lives - paid or unpaid!
I have been fighting CMV like you. My transplant was in 4/2020. I was negative and my donor was positive. I was told it is not usually a problem. Well it has been for me. Even a week in the hospital and had a central line with IV antivirals for 6 weeks. I'm always negative on the medication. But as soon as i stop it is right back. Was treated by an infectious disease Dr as well.have taken many medication. Even one that was $100,000. It was a medication specifically for transplant patients with long term CMV. Then my transplant nephrologist changed tactics. I decreased my myfortic. Lowered my goal level for Envarsus( slow release prograf) and stopped my prednisone. I was told I would always need to take prednisone because of my antibodies. My CMV is now staying around 35. My transplant nephrologist is happy with anything less than 100. He is considering that negative! I hope yours stays that low. Or goes away completely!!! Good luck! It has been a frustrating few years.
Wow! You’ve been battling this quite some time. How have you felt through all of this? How often do you get labs done? I’m just hoping my situation calms down some. It sounds like yours was pretty intense for several years. Incredible, just incredible.
They have just run a CMV T Cell Immunity test on my blood. I’m not sure how to interpret the results and they haven’t responded to my question. But, if I’m interpreting the results correctly, my body is producing the CD4 and CD8 T cells which are apparently the T cells critical to responding to CMV. They’re running a few other tests as well. Hopefully these tests will help them make decisions based on valid and reliable data.
I have been getting labs at least monthly for all this time. Ready to go to 3 months...I feel like a pin cushion. However my labs from this week say I'm negative!!! So hopefully soon I can decease how often I get labs. Most of the time I feel ok. I work full time and do overtime so I do get tired. But that may not be related. I think your latest labs sound promising. I hope you get a negative result soon!
This past week my CMV was “not detected.” Of course, I think there will need to be several more weeks with the same results before they’ll consider pulling back to labs once every two weeks. It will be some time before I’m where you are with labs. However, my labs are finally moving consistently in the right direction.
You’ve been through a lengthy ordeal with CMV. I’m about 6 1/2 months into CMV at this point. I can’t imagine what it would be like to be at this as long as you have. Frankly, it’s exhausting just contemplating that…
So glad to hear you and your transplant doctor are on making progress. Sadly, my hubby's shingles returned (in his eye) and he's been on an antiviral throughout and eye drops to reduce pressure, etc. We're headed back to our transplant center to take charge as well as checking in with an ophthalmologist specializing in viral issues. I hope they communicate with each other. A lady I ran across had shingles return 12 times and she's now on antivirals permanently. Those hidden viruses that come "alive" for transplanted folks are terrible things. I'm so glad your transplant hasn't suffered any issues.
My ophthalmologist worked with Dr Fauci in infectious diseases before moving to the Midwest so he’s on top of all this with my vision, thankfully. I have a vision impairment (unrelated to the kidneys etc) so my remaining vision is extremely precious.
I’m so sorry to hear about your hubby. It sounds like he’s having similar issues tamping shingles down as I’m having with CMV. Shingles is in the same family of viruses that cause CMV, cold sores, chicken pox, etc.
Ugh!!!
How’s your hubby feeling? Has the transplant team been involved in treating his shingles? If not maybe an infectious disease specialist???
I can’t think it’s good for the lady you mentioned to be on medication permanently for recurring shingles. Hopefully that won’t be the case for your hubby.
My hubby's care has been largely taken over by his local nephrologist who has been rather hands off - simply saying "ok" to whatever the eye doctor says. My hubby's local eye doctor is now referring him to a local ophthalmologist specializing in hard to fix viruses. I think my hubby's situation is above his pay grade too. Thankfully, my hubby's transplant center in Richmond sees him every six months; he's due to see them next Wednesday. He's notified his coordinator of his shingles problem so they're aware. We are clueless how this will unfold. My hubby will have to be tracked with fancy eye monitoring equipment, etc. I'm assuming more frequent labs will be needed. Who's all going to do what? Will everything be at the transplant center - two hours away? Or will most things me done here? And who knows what the labs have to say, his local neph thought everything would work out. Everything is a hot mess, in my opinion. I'm seriously worried.
I was concerned that something was wrong; you haven’t been posting as regularly as usual.
Well, I have no doubt you’ll get these players on the same playing field playing the same game and working together.
This stuff is so very time intensive. It seems to take over our lives. Quality of life? What’s that? Stress? It’s become my constant companion. My PCP is the only doctor I see who seems to have a clue how tough it is to navigate all of this. Everyone else just orders more tests and doctor appointments all over the metro and expects me to stand on my head to make this happen. I hope this is easier to navigate when I retire. At least the job obligations will be gone at that point.
How is your hubby holding up through all of this? How are you holding up? Does his local nephrologist interact with the transplant center when stuff like this occurs? I think you’re right that the anti-rejection meds are a major part of the problem getting his shingles under control. Thus my question about transplant center involvement.
I’m insisting that my transplant team touch bases with my other doctors before each appointment. I’m following up with my other doctors to assure that that’s happening. Several of my other doctors take the initiative and send updated reports a few days before my transplant center appointment. All but my ophthalmologist are in the St Luke’s system so their reports are all available to the transplant team. However, I won’t meet with my transplant nephrologist unless she has conferred with two of them (infectious disease specialist and endocrinologist) a few days before my appointment.
Things are going better as far as the communication between them goes. I’m expecting the comprehensive treatment plan created by the three of them in my Dec appt.
My thoughts about all of this? If Mayo has figured out a way to get this done there’s no reason my medical team can’t replicate the basic model. Frankly, my ophthalmologist does this level of collaboration with all his patients primary care physicians automatically. If he can my transplant nephrologist certainly can.
I think you'll really enjoy the freedom that retirement will give you - the chance to grab an extra hour of sleep here or there, to make appointments anytime you want to, etc. Oddly, my hubby simply "blocks out" anything that doesn't sound good to him. He literally tells me that he takes a problem and "puts it on the shelf!" and that I should do the same. Lol. I basically do all the worrying, all the research. I ask the questions, etc. In many ways, I wish I was him and I could simply shrug and trust everything to be okay. But yeah, we fully intend to do a lot of problem solving at the transplant center. We definitely need to map out a strategy to control this shingles matter. We're not going to lose that eye or his new kidney...that's off the table! So I'm going there with my notepad in hand. We'll have to see the treatment plan - it might mirror yours. Or not. Who knows. I really appreciate what you've gone through thus far. Definitely taking all your advice to heart. You're a blessing and true warrior.
So very sorry to hear about your husband's shingles. The trouble and the sttess never seems to end. Praying you have very good luck with your upcoming visit to the team. And bless you for being such an excellent caretaker.
That's scary and having had shingles myself I know how painful it often is, and possibly dangerous depending on the location of the onset. Was your husband offered the vaccine Shingrix? I literally RUN to get mine as soon as I got the OK to.
Unfortunately, that was the one and only vaccine he didn't receive because the kidney came through for him so quickly. The center knew that but went ahead with it anyway. Interestingly, since his shingles is so persistent, he was told not to take any vaccine right now. It's in his eye and won't leave; he was told last week that he'll be on eyedrops for life, but I hope he'll eventually be cleared for vaccines. I'm up-to-date with the covid and flu vaccines; I'll be getting the rsv vaccine next week. But he has had none of the recent ones. One thing has led to another. You are exceptionally wise in getting the shingles vaccine! Get every one of them if you can.
I know. They had previously pulled me off Myfortic twice to try to get my white blood cell count back up. (It was around 1.2 at that point.) it didn’t pull my WBC count up. I was concrr we need about it at the time. But they told me I was still taking prednisone and Prograf which would protect from rejection. Plus my AlloSure scores were extremely good indicating that I was very low risk for rejection.
Nevertheless, this is worrisome. I’m learning from this forum that there are other beds that can be used instead of Myfortic. I’ve read about them as they are mentioned. It looks like some of them don’t effect WBC count as much as Myfortic does. Of course, I may be mistaken on this last comment. Regardless, I’ll certainly ask in my next appointment if there are other options and so forth.
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