Okey, I haven’t posted for a while because I haven’t felt terribly well. I’m fairly sure this is due to the high dose of Valcyte I’m taking and have taken for all but 2 months since the first week of June.
BACKGROUND
I had a kidney transplant the week before Thanksgiving 2022. The surgery went well as did recovery from the surgery itself. Everything went very well until the first week of February. At that point I developed very severe low White Blood Cell (WBC) count. It was around 1.5 at that point. This was a sudden drop from 5.5 or so. Both my CMV and BK virus labs consistently came back saying none detected. Life was 😊 overall with some minor concerns about my low WBC count.
JUNE 2023
My labs came back showing I was CMV+ with a viral load up around 8500. I was placed on Valcyte 1800mg daily. Seven weeks later they discontinued Valcyte. My CMV had been at target <35 for two weeks at that point. It remained at target without medication for only 2 weeks. Then the CMV was back. I was put back on Valcyte 1800mg daily and am still on it today.
August 31, 2023
CMV <35 again. I’m hoping my labs from this week show similar results. If so, I may be pulled off Valcyte again. That would be at least a short term blessing as I have such averse reactions to Valcyte.
Meanwhile I’ve been on Neupogen injections to pull my WBC count up. My last Neupogen injection was July 29, 2023. My last two labs have shown my WBC count is finally back 5.46 and 5.43 without medication support. This has happened while I’ve been taking Valcyte which typically lowers WBC count and also dealing with CMV which also typically lowers WBC count, so my body may finally be generating WBs again; although, I haven’t had a doctor’s appointment to talk about this so I’m just hoping at this point.
Current Status
I’m still going to labs once a week. The transplant center has referred me to an infectious disease specialist with experience dealing with this sort of CMV recurrence in kidney transplant recipients. I have an appointment with her next Monday at 11am.
Conclusion
It’s been a struggle through the summer especially. Frankly, im exhausted. One of the many Valcyte side effects I'm experiencing is an inability to sleep at night. The muscle skeletal pain I’m experiencing with Valcyte is incredible…just takes my breath away. I’ve had to advocate strongly for myself. (I have reached out to the local NKF chapter to inquire about them attending appointments at the transplant center with me but haven’t heard back from them yet.) Nevertheless, it looks as though my self-advocacy may have helped some.
I'm guardedly optimistic about my WBC data. I’m looking forward to adding a member to the medical team working with me. I believe she’ll bring some invaluable knowledge and expertise to the table. I’ll be starting my 11th month post-transplant next week. I’m hoping my 11th month will see this CMV under effective treatment that will greatly minimize its seemingly continuous replication. I’m also hoping to be away from this medication that is causing soooo much havoc with my body. (And, yes, I’ve talked with the transplsnt center at length about these side effects. They simply continuously reply that I have to keep taking it. Eventually my body will become immune to Valcyte. Then they’ll have to do something else.)
Sleepless (and exhausted) in KC 😴
Jayhawker
PS I’d love to hear words of encouragement…
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Jayhawker
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You have reached warrior + status. But, Knowing you from all your posts including this one tells me that you got this. Hopefully, help is just around the corner. The proposed appt with the infection specialist sounds so promising and may bring some relief. I'm impressed that you can write so cogently after not sleeping. For me, one night of severe insomnia and my mind turns to pudding. Any chance they prescribed a very low dose of Ambien? I was so reluctant to take it after it was prescribed for me after multiple failed attempts to fix the insomnia, but a half of a 10 mg works for me. And, I only take it if I'm still up at 1;00 am. So far, I've only needed it once or twice a week.
Peace, prayers, and positive thoughts to help get you through this nightmare by bringing some relief.
I’m not sure about a sleep aide. They certainly know I’m nit sleeping overnight. In all honesty, they seem to be overwhelmed by my case at this point. The additional specialist is needed. I’ll ask about a sleep aid this week. I’m awaiting my CMV data this morning.
Ask for it. A former nephologist prescribed it and my primary agreed. I was so reluctant to try it, but now i view it as a lifesaver once in awhile. I am still reluctant to take it daily, but am relieved to know it's available. A good night's sleep is a blessing when you're not feeling well.
I'm going through the same thing right now. I tested negative for CMV pre-transplant. 9 months post-transplant I got very sick. Called Transplant team and they said go to your PCP who had no idea to test me for CMV. They said just the flu. Two months later my team tested me for CMV during regular B/W and I was positive. They put me on Valcyte, 1800 mg a day. My CMV has dropped to under 35 for three weeks. However, my WBC is down. Neuropils are low but Lymphocytes are very high. Wonder why? My back is killing me and my abdomen is tender and sore. I have no energy. So far my kidney function has not been affected. Plan a big day and can't do any of it. I think they need to drop my Myfortic a little so my body can recover and fight this CMV. I'm so frustrated and feel my team doesn't care. Thanks for listening.
Sorry to hear all the problems that you're having. Similar to Jayhawker, this first year post transplant can be treacherous. Not sure why your team seems so dismissive. It could be thst they don't have any other options. While they'd probably like to change the meds, but they know you need them. Bottom line, however, it's your body and your life. You may have to make your wishes in a stronger voice. Prayers and positive thoughts that a solution is found soon.
Wow, I’m surprised your team didn’t check for CMV immediately. Especially since it sounds like you’re also in the high risk group, have you been on Neupogen to boost your WBC count? If so you really need to let your transplant team know about abdominal pain on the left side of you abdomin. I’m dealing with a lot of side effects from Valcyte; all those you mention plus dizziness, very numb feet, intermittent moderate headaches, hand tremors, and some pretty intense muscle/skeletal pain. I’ve even had a few hallucinations. Clearly Valcyte and my body don’t do well together. But it does pull my CMV down; unfortunately, it hasn’t stayed down after they pull me off Valcyte. My CMV surfaced about 7 months post-transplant. They had pulled me off low dose Valcyte 2 months early. Had they left me on it the full 6 months of have had my bout with CMV at 9 months too.
We’re both just going to have to hang in here and get through this.
I do not completely understand all the information you posted but holy cow, seems like a lot. I hate insomnia and I know how debilitating it can be. Keep fighting and advocating. Seems sad the NKF is not offering more support. I wish only the best for you.
I haven’t heard back from NKF yet but this may not be the sort of thing they do. If so, that’s fine. I’ll ask one of my long time friends to go with me or at least attend virtually. They’re just busy visiting grandkids and such so would not be able to be there consistently…
Why do I think you've always been a super independent person who finds it hard now to ask for help. But, things change. Learn to ask. It gets easier. It's an admission that you need help, a position that many of us are not used to. Good luck.
You are so right on my independence. But I’m aging and in need of help. I’m learning to ask. Most do so willingly and many voluntarily. Those who don’t are few and far between. I’ve come to think that this is their problem..,
I’m originally from upper state New York. My mother’s home town is Long Lake. So, she came from hardy stock who were very independent and private. I’m a lot like that too. But unlike my mother, I never married so have no children and am the last person in my family living at this point. I’d be comfortable asking family but not so much asking non family.
Nevertheless, I’ve got to get over this. I’ve got great neighbors who willingly jump in to help on a regular basis. And there are people from my church as well as a dear friend who retired from the university I teach at a few years ago who helps some too.
I’m just debating whether it’s time to sell my house and move to assisted living. I just don’t want to go that far yet. But I suspect I’ll have to if this isn’t resolved within the next 4-6 months.
Hey fellow NYer. Love Long Lake. Have camped there many times. About you being independent. I get it. I am the same way. I never ask for help. I even struggle asking my hubby for help. I think I can survive without support and see it as a weakness. I am learning to be better about it. When I went to have my fistula surgery, I had to ask a neighbor to come over and help us take our bed off the frame and lower it. He was shocked to hear about my CKD, but very gracious. He came and helped us. But now, I get the "look" when he and his wife ask "how are you doing?" I hate the look.
Yeah, I hate the look too. Plus I find it nice to have part of my life that isn’t ruled by all things CKD. But I’m going to have to get used to asking for help…
Did you notice Helms Aviation (parked by the lake where take-offs and landings happen on the lake? Three of my uncles began that business. It’s now run by one of their children. They also own Helms Country Store.
I call that look you get adjusting to the "new normal." I've been fiercely independent all my life and my early.home situation allowed it. I didn't retire until my early 80's. But, as the birthdays pass, each few weeks bring new symptoms some of which are permanent. So, I just smile and think "wow, this is new" and I try to adjust to people wanting to help me.
Hi, Jayhawker! First, congrats on the transplant. Second, hang in there. I second the earlier comments - you've got this! I'm sorry it's been such a trying experience. I've heard the first year after transplant is rough, sounds like you have experienced that in triplicate (at least!). I'm thinking of you and sending good thoughts your way!
My CMV and BK data is in now. BK continues to come in as not detected. Good news there. And my CMV data has come in again in target range <35. So that’s two consecutive weeks with CMV in target range while on Valcyte. That’s also good news. Of course, the issue has been whether it will stay at target when I’m pulled off Valcyte. We’ll see once my nephrologist pulls me off Valcyte.
Those are definitely a couple steps in the right direction! Wonder if your infectious disease specialist will keep you on the Valcyte prophylactically, switch you to another drug like Maribavir, etc.? (That video you linked is loaded with great information.) It's gonna be interesting to hear the outcome of your visit. Hopefully, whatever is prescribed doesn't keep you awake. If it does, I agree with others who suggest checking into a sleep aid. And maybe a stomach aid too if you're staying on Valcyte. Not getting good sleep is a very nasty thing. For me, I get blah and depressed, and my appetite vanishes. No fun. So, onward and forward, Jayhawker! You're going to win this battle! Yes, that's my prediction and I'm gonna stick to it!
I agree with Darlenia. You will win out over all of this, but it seems it's just going to take some time to do so. During that time, be kind to yourself. A little self pampering might be in order. And it's absolutely ok to feel sad, frustrated and even angry about what you're having to go through. We're all told transplant is a "treatment" but boy who would've thought it would give US the treatment! So whatever you can do to make this journey easier, just do it. You are one of the strongest people I know, but even the strong need some downtime. I'm glad you posted all this. Even posting and sharing our issues helps (from my own experience-as you well know Let us know if you need more words of encouragement. Always ask! Wish we all lived closer so we could come over and commiserate in person, but these responses are the next best thing. I hope your new specialist has wonderful ideas that can help.
Thanks so much for your kind words. At this point I just need to sleep… I know that would help a lot🙂
I’ve messaged the transplant center to see if I can take anything to help me sleep. I’ll also let them know I’m seeing the infectious disease specialist via telemedicine on Monday.
Thankfully football has started. I’m a huge KC Chiefs fan so will begin watching those games. I’ve also begun reading for pleasure which I do during vacations. Anyway, I think you’re right that I just need some down time. I’m quite the workaholic. Frankly, retirement next July could be pretty interesting…
I’m not sure how I’ll adjust to retirement but my university is in extreme turmoil. They terminated 33 tenured faculty without cause last September. This has received quite a bit of national media coverage. After that, many younger tenure-track faculty found jobs elsewhere. Most were not replaced. Those who were were were replaced with non-tenure track instructors on year by year contracts indefinitely with no job security. This new administration (a CEO from business with no education background) is now essentially coercing these instructors to do whatever he wants. It would be impossible to overstate how toxic the university environment has become.
So, I finish directing a large federal grant the purpose of which is twofold: 1) to develop training models for rehabilitation counseling university programs and vocational rehabilitation counseling agencies (both for profit and nonprofit) and 2) to create free virtually accessible training materials these programs can use as their training curriculum.
At this point we’ve developed and piloted 4 training models for institutions of higher education and vocational rehabilitation agencies to use or modify to fit their their resources and specific nees. We are finishing a final cohort of graduate students who are participating in this training virtually on June 30, 2024. We are diligently creating free, virtual training materials, the training curriculum, for universities and vocational rehabilitation agencies use nation-wide. However, these are in first draft form now and will undergo national review and revision this year with final changes and polishing happening through 2024.
This grant ends in late Sept 2024, a few months after I’ll formally retire. As the sole federally-funded national demonstration project focused on serving autistic adults, I’m deeply committed to ending this well. From July through Sept 2024 the granting agency in the US Department of Education will pay me a consultant stipend to finish polishing the training modules and write the final grant report.
This grant focuses on something our country has needed to set into place for autistic adults for many decades. While the United States is considered to be a world leader in provision of effective educational services for autistic children and adolescents, our adult services fall far behind those of several other countries. This grant won’t eradicate that problem, but it should support the first step toward that end. Others will need to move this forward in upcoming decades. Thus my commitment to this grant project. I’m honored to have had the opportunity to guide this first step along with my grant team and leaders around the nation. It is our hope that our work will lead to improvements for autistic adults throughout the United States.
That being said, I am literally counting the days until retirement so I can leave this extremely toxic university environment behind. It has become so difficult to navigate the ongoing ethical challenges that now exist when working with our students. It’s these ongoing ethical challenges and the overall toxic environment that have driven my decision to retire in July of 2024.
Anyway, it’s obviously time for me to transition into the next phase of my life. (That was likely more information than you wanted or needed … )
Your work is wonderful. I can't imagine being an influence like you are on such an important service. I'm sure it will help tremendously with efforts to support autistic adults in the upcoming generation. It's great that you and others were willing to work to fill that void in educational materials available. Also good that they are willing to allow you to finish this first phase of the work, so others have a solid foundation to build on in coming years. That is quite a commitment. I wish your health had not interfered, but it seems like, being the trooper that you are, you have carried on despite your health problems and all the time and energy you have had to give to that this past year. Pretty amazing you 've been able to do that.
And yeah, I've been through those administration changes like that where the new guy in charge thinks he has a better method of doing things, (better for who, I'm never sure). I hate that for those tenured folks who got let go, but also for those who now have to live from year to year without knowing what the next year will bring. I am glad you missed out on that part. But yeah, it's a smart cooking that knows when it's time to turn the page into the next chapter. I'm sure there's consulting work that you'll end up doing in some form after next Sept. I don't see you actually doing the "retire, retire" thing for some reason I'm sure you can find some way to contribute, without all the toxicity. Will be a good change.
I like all the info. It's good stuff. that's your legacy, not kidney stuff.
I’m thinking about getting involved in advocacy work after I retire. I’d love to have the opportunity to lobby Congress for legislative reform regarding early identification, aggressive research focused on treatment, and reform of medical insurance as relates to patient choice and CKD treatment coverage. How many times have I heard a doctor say there is an effective newer treatment but it is too expensive and/or isn’t covered by insurance. Frankly, there need to be some brakes put on what drug manufacturers charge for these medications. I think it’s time for me to reach out to Katie Porter. She’s got a way of breaking complex issues down and pulling them together with her charts🙂 Of course this needs to be a bipartisan issue which I suspect it would be.
I’m just pondering at this point. But I’m likely to move toward something outside autism…
Katie Porter is a US Representative in the House. She’s notorious for her use of charts when presenting information on the House floor… She uses these charts to visually clarify and emphasize points she’s making. It is sometimes pretty humorous.
Wow, Jayhawker, I was so surprised to read about your work at the University Although I spent 20+ years working with veterans at a large hospital. I spent even more years providing services to my states vocational rehabilitation agency. And, yes, rehabilitation services is badly needed for the adult autistic population. I've seen it first hand. And, many times ignorance about condition plays a role. Rehabilitation work is very rewarding as there is nothing more fulfilling than to experience someone getting a job or an education they deserve. Can't wait to see your grant's work take place.
I had the opportunity to attend an international autism Congress in Scotland about 8 years ago. Frankly, the UK is miles ahead of the US in provision of supports for autistic adults. So, this grant is really the first step for us. The grant ends in early Sept 2024. I’ll officially retire from campus on July 3, 2024, and finish the grant shortly after. It is my hope that this is just the beginning of training for VRC personnel. We need to see autistic adults in the workplace!
I've had CMV since my transplant. I've been on every drug but it doesn't want to go away. They finally had to lower my immunosuppressive drugs and just let my body try to fight it. It's been since 4/20/20. Finally below 35. Hopefully stays that way. Tired of all the labs!! And valcyte makes your WBC drop. So sorry you are going through this. Not sure how to help. Just letting you know you are not alone. CMV would be low on the meds but every time they stopped the meds it came back.... ugh
Have you developed immunity to any of the antiviral meds? Where is your WBC count now? And how is the donor kidney holding up with all of this? Three years and nearly four months is a very long time to grapple with this. I admire your perseverance! My patience has already reached its outer limits…
My kidney is great. Not sure about the immunity to the meds. I've been on valcyte many times, gancyclovir IV for 6 weeks and maribarvir. They all work while I take them. But as soon as I'm off... but I'm finally making progress since stopping prednisone. My envarsus and myfortic are on the lower dosing side. So I'm hopeful that I'm done with it. Labs again in a few weeks. I've been working the whole time. So that has added to the stress. But life moves forward.
I am also on low doses of Prograf, Myfortic, and prednisone. Interestingly my WBC count elevated back into the normal range a few weeks ago without Neupogen therapy and while I was taking high doses of Valcyte with an active CMV. That may be a good sign.
My transplant nephrologist has told me that if I haven’t had a Neupogen injection within a week before my labs, the WBC data reported in the labs is what my body is doing without medication support. I haven’t had a Neupogen injection since July 29, 2023. My WBC count is now ranging from 5.43-5.99 (4.0-11.0 normal range). I haven’t seen it up in this range since last January. So, I’m hoping my body may now have sufficient WBCs to combat CMV as it begins actively replicating when they pull me off Valcyte in a few weeks. My body should be recognizing CMV by now as long as it’s mutations are close enough to the variant my body has already experienced.
Good news that your kidney has functioned well throughout all of this! That gives me some hope!
It sounds like you’re going through a lot. Keep on the folks at NKF. They have a peer program . It sounds like you are doing a great job advocating for yourself, which is difficult to do when you are overwhelmed by feeling sick all of the time. Hang in there - easy to say. I will keep you in my prayers 🌷
Hoping things are turning around for you. Agree with drmind that you have reached warrior + status. All of us deal with pain, stress, insomnia at times but you have had the challenge of it becoming chronic, which leads to feeling more stressed! So sorry this is happening to you.
When I had this level of stress, and none of my regular coping skills worked, I finally went to a therapist. It helped me to be able to talk out my frustration and fears to someone who was a professional. It allowed me to regain my perspective, develop new coping skills and reduced my stress level. It helped that the therapist I chose just happened to have personal experience with a chronic illness herself so she totally got where I was coming from.
I understand therapy isn’t for everyone but just wanted to share that for what it’s worth. I also listened (and still do today) to 8 hour sleep hypnosis in the background when I went to bed (in addition to sleep med if necessary). It gives my mind something to focus on instead of letting my thoughts chatter on. There are tons to choose from on YouTube and I found some favorites by testing out the ones that were most popular. As others have cautioned, I took sleep meds sparingly and only when needed. Hugely helpful.
Watching a season of the Chiefs will be a welcome distraction, I’m sure. Good game on Thursday despite loss to Detroit. Kelce should return for game 2 against Jaguars per rumors in sports news so I am optimistic for KC. Optimistic for you too.
I have actually gone to therapy before when I initially received my vision diagnosis and had a severe and dramatic deterioration in my vision over 6 weeks. Therapy did really help. It may be time to go back.
I’m a certified music therapist so wholeheartedly embrace the benefits of therapy in general🙂 Thanks for the suggestion!
I am sure that a huge part of the issue is the sleep deprivation. I’m focused on that at the moment. The second part is the severe muscle/skeletal pain I’m experiencing. I’m focused on that too as without resolving it I’m struggling to get basics like my laundry done. I’ve honestly not experienced pain like this before. It’s both severe and nearly continuous. That’s part of what’s inhibiting my sleep. I’m truly hoping it’s related to Valcyte. I’ll know for sure when they pull me off Valcyte.
I’ve been doing stretching exercises in bed several times a day to try to help with the pain. I’m going to try using a heating pad intermittently as well today. Tylenol is all I can take. It does lessen the pain for about 2 out of every 4 hours. But it doesn’t resolve it completely. However, it’s often enough of an improvement that I can get some work done around the house. Other than this I’ve been meditating and listening to music, reading, etc. Distracting myself helps get my mind off the pain which helps.
I do think my WBC data is encouraging. Plus I’ll see the infectious disease specialist tomorrow at 11am. I’m looking forward to hearing what she has to tell me. And I’ve got questions ready for the appointment.
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Let us know if you need more words of encouragement. Always ask! Wish we all lived closer so we could come over and commiserate in person, but these responses are the next best thing. I hope your new specialist has wonderful ideas that can help. 
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