Yesterday, Nov 16, 2023, was the one year anniversary for my kidney transplant. Cindy (my donor kidney named after my good friend who helped me decide to pursue transplant eligibility testing) has been a trooper this year. She has soldiered forward without faltering as we’ve battled very low white blood cell counts (from early February through late July) and four rounds of CMV (from May to date).
Current renal function:
Creatinine range: .72 to .75
eGFR: 85.8 to 90.1
WBC count 4.86 to 5.89
CMV (new treatment plan for current recurrence): <35 to “not detected”
Electrolytes in average range
Mild anemia (11.3 to 11.6)
My new CMV treatment plan is working. I’ve been pulled off Myfortic. They have increased Prograf by .5mg daily. No antiviral medication. They are relying on my immune system to generate the specific T cells needed to respond to CMV. They’ve tested my T cell response rate. In short, my body does generate T cells in response to CMV, I.e., both the CD4 T cell which scouts out CMV and the CD8 T cell which combats CMV. This data together with the renal panels drawn over the past six weeks which show a very different CMV progression (much better) than the past three rounds of CMV, have convinced my doctors that my body is effectively combatting CMV using my own immune system. They expect this will continue.
So, Cindy has remained strong throughout all of this. I feel like I’m emerging from the wilderness and rejoining civilization.
I’m thankful but also deeply committed to the importance of self-advocacy. My doctors would not have tried this new treatment plan without my push for them to do something different.
That’s my one year anniversary update. I thank this forum for its continuous support throughout this past year and before. It would be impossible for me to overstate how beneficial that has been.💕
Jayhawker
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Jayhawker
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I’ve been surprised and thrilled with my renal panel data. It has literally increased month by month even as I’ve battled both low WBC count and CMV. Cindy’s a trooper!
Congrats on this major anniversary! Your kidney numbers are fantastic! So happy for you that CMV has not affected CINDY. Now you need to travel...and LIVE your Life! Hugs and Prayers coming your way!!
Congratulations! So happy your kidney is functioning so well and your health is continuing to recover from your setbacks! Here’s to the first of many years with Cindy at your side! 🎉
Such wonderful news. I love the fact that you named your kidney. I totally agree with advocating for what we need. I hope things continue to get better every day for you.
That's great news Jay hawker!! I didn't realise your kidney function can get back into the 90s after a transplant. I love your statement..re-emerging from the wilderness and rejoining civilisation 🤣🤣🤣🤣...I sometimes have a burst of energy and a desire to do things. It reminds me of days when I was healthy and I think this was what it was like to feel normal. Keep going my friend. We are very proud of you and an inspiration for those of us, waiting for our transplant. You and Cindy make a great team 👍👍👍
Great news! Fantastic numbers...seriously! You and Cindy are great match. My hubby's eGFR is always at or under 50 but they're happy with that. Really glad your immune system is taking care of your virus....my hubby's shingles has put him on eye drops for life per his retinal and corneal specialist. No one, including that specialist, wants to adjust his immunosuppressants, but his kidney is carrying on as usual. So we're carrying on too. Overjoyed that your bumpy ride is smoothing out with, the world opening up in front of you . Gosh, how nice that is. Waking up and finding out your dream is highly likely real!
It’s good to have answers for your hubby’s shingles. I have to use eye drops daily for glaucoma. It’s fine. I’m sure your hubby will be fine with the eye drops he needs to use. As we’ve each noted on this website, when the donor kidney is doing well, the doctors, all doctors, don’t want to rock the boat. My eye specialists are the same.
I’ve got at least 6 more weeks worth of weekly labs I think. I know my doctors will want to assure that everything is stable. But they are clearly convinced that we’ve turned a corner and are on the right path now. They’re settling into this treatment plan.
My AlloSure data came back yesterday. It continues to look very good (.12) meaning I’m very low risk for organ rejection. I’ll get a bone density test in Dec to determine what, if any, impact the prednisone has had on my bones. Then it’s just ongoing monitoring for cancer etc.
Right now, I’m just relieved to see the CMV in check.
Terrific overview Jayhawker. Your numbers look to be tightly managed. Glad your team is willing to think outside the box.I've loved following your journey.
CONGRATULATIONS!
Thank you for allowing us a glimpse into your story.
Hey, just catching up. Hard to believe it's been a whole year. Hot dang. You will be, as always, an excellent example for folks to follow on how to manage through all of this with grace, courage and intelligence. Looking forward to hearing how this next year goes.
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