Tomorrow is my 15 month kidney transplant anniversary (transplant Nov 16. 2022). My battle with CMV appears to be resolved. My CMV data consistently tests “not detected” now and has for the past 3 months. This has been a major battle. I was CMV- pre transplant but the donor kidney was CMV+ so I got CMV from the donor kidney. For 7 months CMV raged. They eventually pulled me off Myfortic. That caused my ongoing CMV issues to calm down and stabilize where they are today.
However, my neutropenia persists. My neutrophils remain low. My lymphocytes remain high. I also continue to have mild anemia. They discovered that I have T-LGL leukemia early this past December. My ongoing neutropenia and anemia result from the leukemia.
I’ll see my hematology oncologist for a second appointment tomorrow. He has run a myriad of tests. He’ll explain the results in my appointment. I’m hoping and praying that he didn’t find anything else as far as cancer goes. I’m also hoping that he will be able to confirm that my form of T-LGL leukemia is that which progresses very slowly.
Tonight I’m awake. Sleep just isn’t happening. I know it’s stress. When I started this transplant journey I never dreamed I’d be celebrating my 15 month transplant anniversary by attending an appointment with a hematology oncologist. This has been a rough 15 months. I could sure use some better news tomorrow.
Jayhawker
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Jayhawker
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I'm thinking positive for you and hoping with all my fingers crossed. You certainly have been through a lot of rough waters since the transplant. And, you've been a warrior through it all. I'm sending a virtual hug and hope it gives you some comfort. Hoping you can sleep a little, but I do know how difficult that is when anticipation is high. Peace and blessings. Whatever happens, I know you got this.
Hey Jay, I’m praying that things go well for you today. I have a feeling they will. I’m so glad the CMV is under control! That’s got to point to good things. Let us know how it goes.
Just got out of the doctor’s appointment. Nothing concerning showed up in the myriad of tests he ran. He says no treatment is needed right now. He will order labs every 3 months to monitor the T-LGL but that’s it for the time being.
I’m extremely relieved. I also thank you for your words of suppprt.
I am relieved to hear this good news. I am very sorry you could not sleep due to stress, it happens. I have it happen too. Enjoy your good news, be well.
Great news, Jayhawker! You deserved getting that great report. A lady up the road from me has extremely low platelets and is undergoing all sorts of tests. She's very stressed. And I immediately thought of the very rocky road you've walked. I'm trusting that your path ahead will be smooth and trouble-free going forward. You truly deserve it.
First three months everything went well with my labs. Of course my body was adjusting to the meds. I had fluctuating blood pressure, intestinal tract issues, hand tremors, some speech articulation issues, and was weak. These medication side effects gradually improved over the first three months. Also over the first 6 weeks post transplant they gradually lowered my prednisone dose to the maintenance level where it remains today. It took about 4 weeks to regain basic strength. By 3 months out my strength was back. My renal function improved consistently during this time ultimately reaching eGFR of 65-70. (It even tested between 85-90 a few times during these months.) That’s within the normal range for a woman my age. I was both surprised and thrilled.
During my third month I developed dangerously low white blood cell counts. That was the beginning of my challenges. They ultimately used infusion injections, Neupogen, to try to elevate my WBC counts. It wasn’t as effective with me as usual. I did start administering it to myself at home based on my weekly lab results and direct orders from the transplant center. I had a lot of difficulty with this medication; extreme mysckeskelrrsl pain. It was continuous for over 4 months. They changed transplsnt medication dosing a lot over the next 5 months.
I was CMV- pre transplant. My donor kidney was CMV+. Initially my CMV data looked good consistently testing as “not detected.” That changed in April. From mid April through mid Nov 2023 my CMV raged. It was continuous. They used a medication, Valcyte, to pull the viral load down but it wouldn’t stay down. Not only was Valcyte less effective than they hoped, I also had lots of difficulty with that medication; lots of side effects some of which were pretty difficult to manage on a daily basis. I felt pretty poorly but did not land in the hospital like many do.
They discovered that I have T-LGL leukemia in early December 2023. This is an extremely rare form of leukemia. It’s even rarer in solid organ transplant recipients. I’ve already posted about this in other posts so won’t repeat that information here. Further, it’s highly unlikely that anyone in this forum would experience this as it’s unrelated to the kidney transplant or transplant medications. However, it does explain my unusual lab data post transplant as well as the difficulty getting my CMV in check. It’s also likely to be the reason Neupogen didn’t work normally with me. So, for me, the leukemia diagnosis sheds light on my case that has proven to be of help for the transplant center.
The stress I’ve experienced related to all of this has been off the charts. Endless labs and doctor appointments… A myriad of new tests some of which my insurance won’t cover leading to financial concerns—more stress. For the past 12 months I’ve averaged 2.5 medical appointments a week. This includes weekly lab appointments. All of this while working full time. I’m single and the last person alive in my family. Stress management has been a significant issue.
I’ll retire on July 3, 2024. That will give me extra time for all of this. At this point I’m exhausted…I’ll be able to sleep late and so forth starting in July. I do finally sense that we’re getting to the end of this high stress situation. The transplant center just cut back on numbers of labs they’ll gather monthly. It’s 2 this month, 1 in March and 1 in April. I would normally have 13 labs during that same time period for them. So this is a significant decrease. They have also cut back on numbers of appointments. I won’t see them again until April 8th. I’m hoping they’ll consider turning me back over to my regular nephrologist at that point with me arriving at the transplant center only once a year…. But that may still be 6 months away.
To be clear, without the T-LGL leukemia, my journey would have been much more predictable and easier to manage. My low WBC would have responded favorably to Neupogen. My CMV would have responded normally to Valcyte. So most participating in this forum will not experience what I have.
Yes i hear you 17 months post transplant and battling cmv 10 months now,and finally they are stopping my mycrophenolate afrer i suggested it a month ago after reading your post.The iv foscarnet is destroying my already sensitive guts from ibs so tonight i not sleeping either as im wreathing in abdonminal psin with nothing alleviating it.Not the post transplant life i was expexting eithef.
they told me that it was my T-LGL leukemia that was creating the problem with Myfortic and CMV control. I don’t begin to understand why, but I did get the impression that they would not have stopped Myfortic if I didn’t have this form of leukemia which is extremely rare.
In my oncology appointment last Friday, my oncologist mentioned that if I begin showing signs of organ rejection my nephrologist may need to restart Myfortic. I didn’t ask whether restarting Myfortic would lead to elevated CMV data again.,,
Jayhawker
best of luck hope everything is going to be ok I had a kidney transplant 10 months ago it’s a miracle in one way but lots of anxiety and worries every time you get a twinge or slight pain 🙏 for you
Sorry not to have posted an update; I’ve been running to lots of labs and doc appts. I’m also retiring on July 3rd so have a lot of extra stuff going on at work as I get paperwork in place to shift medical insurance and start my TIAA retirement benefits.
As far as my transplant goes, the transplant center has agreed to transition me back to my regular nephrologist. I’ll see him twice a year and go back to the transplant center twice a year for the next two years. I’m thrilled about this.
First, he’s very good. He has transplant center experience. He left the center to start his own practice wanting to provide quality care before kidney disease progressed to the point of needing a transplant. I still believe had he been my nephrologist from the beginning I might never have needed a transplant. Nevertheless, I’m so very thankful to have the transplant.
Second, he has a great sense of humor. It is never tense during his appointments even with difficult news. Unfortunately the transplant center has been very tense from the beginning. My first post-transplant appointment I saw a person I thankfully never had to see again. He literally yelled at me for the majority of the appointment. I had been transferred from the hospital to rehab due to my severe ankle injury. (I fell a few days before the transplant.) In rehab they wouldn’t let me set up my meds or take them independently. They also weren’t measuring my fluid intake consistently. I tried to stay on top of the fluid intake but literally couldn’t handle my meds. He yelled at me for nearly 10 minutes saying I clearly didn’t care about the kidney; I was going to cause a rejection; I was selfish… It was horrible. The nurse in the room was shocked. She just told me quietly as she took me out of the room just to drink water.
That began what has been a tense situation with the transplant center. I certainly had to pick myself up following that first appointment and begin self-advocacy! It just will be soooo good to get back to a doc with good rapport, a sense of humor, and stress-free interactions.
My leukemia is under regular surveillance with doc appointments every 3 months. Thankfully Dr Hoffmann is very approachable. He has excellent patient rapport and a good sense of humor. Right now, there is no need for treatment. He has said that if he does need to start treatment his first approach will be to increase prednisone and add another anti-rejection medication to my treatment plan. This would be for 6-8 weeks only. He might also need to treat the anemia.
He has run a number of additional tests. I have the slow moving form of t-LGL leukemia. This means I’ll likely live a normal lifespan. I’ll probably die from something else. This type of leukemia doesn’t typically result in death. Instead it places the person at high risk for pnemonia and other lung-related problems. Those are what more typically cause death for persons with this type of leukemia.
So I’m adjusting. It will be masking and meticulous hand washing for the rest of my life. Plus avoiding large crowds during peak cold/flu season. Staying current in all vaccinations… COVID was good preparation for t-LGL leukemia.
I’m finally feeling better consistently now. I no longer wake up wondering if I’ll be dizzy and weak. I feel like I’ve been through a major war. My body is exhausted but at least I can consistently do light exercise now. I anticipate I won’t be back up to full speed until August. But I’ll get there. I had begun to wonder if I was going to survive the transplant.
Through it all Cindy (my new kidney) has worked like a trooper. That’s been the silver lining.
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What symptoms did you have from having CMV virus?
